Sew What’s Up Presents
The Sew What’s New Archive
This archived content is from Mary Wilkins’ sewing and
quilting message board “Sew What’s New,” which was
retired in August 2007. It is being provided by
“Sew What’s Up,”
which serves as the new home for many members of “Sew What’s New.”
From: MaryW
Date: 04-24-2003, 04:06 PM (1 of 71)
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I am starting this forum for those of us who have kids or grandkids with special challenges. These kids need our love and support. They are the bravest people I know. Do you have a child or relative with ADD. I do. Do you have a child or relative with autism, I do. There are many physical and mental challenges that these kids face every day. As parents, we have to give support to one another and help point others in the right direction when they need help. If you have a child, friend or relative with special challenges, please feel free to post here. We are a caring, sensitive group that will support each other whenever we can. I have a grandson with ADD. While this is a minor challenge, it is something he has to live with every day. School is consistently difficult even though he is labelled as "gifted". Teachers find it very difficult to deal with him. I have my days when I could just cry for him. I also have a grandson with autism. Mattie is 5, gorgeous and struggling constantly. He came up to me and his grampa on Sunday and gave us both a huge hug. If you are familiar with autism, you know these kids are in their own world. For him to do this is an absolutely huge step. I could have cried, he made me so happy. His mother works with him every single day, he also has a speech therapist who sees him regularly. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542 
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From: LeapFrog Libby
Date: 04-25-2003, 01:10 PM (2 of 71)
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Our newspaper had an article about autism the other day.. Something new I had not seen or heard before about removing heavy metals from their bodies were helping some children???The article concentrated on the dietary aspects and how much time and effort the parents had to spend caring for the child.. That is the one thing I haven't been close to in a child.. I've seen about everything else first hand in my life having been exposed to so many children.. 25 years as Sunday School Teacher, and helping my Mom in her Day Care Center for 10 or 15 years..This article sounded promising for some of these children..
Sew With Love
Libby |
User: LeapFrog Libby
Member since: 05-01-2002 Total posts: 2022 
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From: MaryW
Date: 04-25-2003, 01:31 PM (3 of 71)
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Mattie does very well with special vitamins. From what I gather, his metabolism is so much different than ours. He cannot handle milk, he must have soy milk which is very costly. He also takes vitamins which help him with his speech. A common effect of autism is no speech at all. With his vitamins he is speaking, albeit with difficulty. The vitamins, which include fish oils also changed the texture of his hair, weird eh. If he eats bread, he breaks out terribly. He loves homemade bread but if he has even a single slice, he pays for it dearly. His mother works with him 7 days a week, prepares special foods for him and makes sure he is getting everything they can possibly afford to give him. He sees therapists that cost big bucks per hour. They are constantly trying to find funding for his therapy. It's a struggle and not easy at all. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: mary6
Date: 04-25-2003, 08:50 PM (4 of 71)
Hi all! I too have a son with ADHD and PDD features-(pervasive developmental disorder) a form of autism. He is 7 1/2 years old-a true sweet heart! He is in medication, which at first I was so against-he is now on a different Rx-aderall xr- which helps him sooo much. Stephen is such a loving and affectionate child. His brothers sometimes have a hard time with him-at times he is very immature, but that's life! Tomorrow he is making his First Holy Communion-he is so excited-so are we. Stephen is in a regular class with resource room daily-helps him so much. His teachers are fantastic-I love them and they always tell me Stephen is so special-he is. I have to go now, we are having a house full tomorrow- I embroidered a towell with a chalice and host -looks great. Talk soon. Mary Lou
mary6
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User: mary6
Member since: 11-09-2002 Total posts: 19 
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From: Bama
Date: 04-26-2003, 05:22 PM (5 of 71)
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Good topic Mary. Thanks for starting it. Alot of the ladies that have been here a while already know about my son. For the ones that do not, my son is 14 now and was diagnosed at age 7 with Tourette Syndrome, ADHD, and OCD. We've been through it all the last several years both at school and at home, but we made it. He's finally getting better now that he's getting older. Like Mary's grandson, he is also considered gifted, but it still takes a special teacher to deal with him. If he has a personality conflict with a teacher, forget him doing well in that class. Thank God all of his teachers this year have been wonderful with him. I have a friend at work who has a 15 year old son with Tourette Syndrome also. She was a God send for me. She is my biggest support now, since she knows what it's like, and she tells me the same thing. We have very similiar stories to tell. It's amazing to me that we work together, and have the only two kids in the whole school known to have Tourette's. A support forum here is a wonderful idea. I'm here to listen. |
User: Bama
Member since: 03-21-2000 Total posts: 2116 
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From: MaryW
Date: 04-26-2003, 06:03 PM (6 of 71)
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Well, I'm here to talk. LOL. It's nice to be able to share "adventures" with others who know the problems involved. Some days are diamonds, some days are stone. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: siwian
Date: 04-26-2003, 07:35 PM (7 of 71)
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I hope it's alright for me to join in here. I do not have a child or grandchild with special needs but I have taught Special education for the last 22 years. Currently I teach SDD (significantly developmentally delayed) 3, 4 and 5 year olds. This doesnot mean intellectually delayed only-I work with any child who is delayed in one or more of the five areas-cognition, communication, motor, social/emotional, and self-help. I have had 5 children with a diagnosis of Autism Spectrum Disorder during the last 4 years. One year all 4 boys in my class were all considered Autistic. This year I have a little girl who has not gotten a confirmed diagnosis. Mary- The Public school system doesn't offer programs for Autistic children where your grandson lives? It wouldn't help with the medical expenses but it would with the speech therapy and other therapies he needs. Do any of you use a Picture Communication System with your kids? Not to replace Verbal speech but to help cue them for the words they need. One of the boys I worked with was Hyperlexic -he could read at 2 years old- and was very verbal but did not always communicate well. We gave him a Picture system and he could look thru and find the word he needed. It helped him so much both with communication and socialization. Siwian |
User: siwian
Member since: 12-27-2001 Total posts: 114 
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From: MaryW
Date: 04-27-2003, 07:11 PM (8 of 71)
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Hi siwian, of course it is alright for you to join. The more that join, the more support we can send everyone. Our public school systems are sadly lacking for any sort of help. When Mattie starts school, he will be assigned an aide. To get the educational authorities to offer anything or to even tell you what is available is just not possible. They want an even, uneventful day. Don't make it difficult for them by asking for anything extra. I asked for a one on one meeting with my grandson's homeroom teachers after his last report card was sent home two weeks ago. After a few days went by, one of them called and said they were very busy but would "squeeze" me in Wednesday. They are supposed to be available for these meetings. They made me feel like I was taking too much of their time.  Sorry for the rant. I could go on forever. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: pbknudson
Date: 04-28-2003, 10:34 AM (9 of 71)
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Mary, does your school system have a Parent Resource Center? Ours is very helpful to parents of children with differing abilities. I also taught Special Education for 10 years before changing to third grade. I work with special education students daily in my own classroom. Just a note in defense of teachers, I work from 7-5 most days and this week I have classes or meetings 3 nights after school - school required (I am paid for 7 hrs.) A years ago when we were in the midst of adding new programs to our building, our staff had worked 6 weeks of what would be considered overtime at any other job, between August and December. I don't keep track of my hours anymore - although I did spend 6 hours at school Sunday, along with several other staff members. We don't get many praises from many parents even though our student test scores have risen and children in our building are happy, but we do hear about everything parents disapprove of happening. Our school is somewhat unusual in that the teachers here are ALL overachievers. We truly work hard to help children. During the day, if I did NO teaching, I could spend 15 minutes with each child in my classroom. When you consider that it is unlikely that I could get away with not teaching, those minutes decrease rapidly. It isn't that we don't want to meet with parents and work one-on-one with students, but time is a BIG factor - especially when we have our own families and lives to live also! I don't mean to sound like a grouch, but I don't think the public really has a clear picture of what really happens in the school. On the other hand, there is nothing I would rather do than teach - except maybe sew! Packrat
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User: pbknudson
Member since: 04-02-2003 Total posts: 20 |
From: MaryW
Date: 04-28-2003, 02:32 PM (10 of 71)
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I hear what you are saying. Most teachers are great and I could not begin to do their job. But, in defense of parents that would like to discuss a student and get some real feedback, I find a lot of them lacking. Yes, it's because of time. So, what is the answer. More teachers???
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: pbknudson
Date: 04-29-2003, 10:00 AM (11 of 71)
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Mary, I don't have the answer to that! Wish I did. I do understand your frustration too. Is is possible Mattie has gluten intolerance? I just learned about that this past summer and found it very interesting that some children and adults have an intolerance for any foods and even play dough and paste that have gluten in them.
Packrat
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User: pbknudson
Member since: 04-02-2003 Total posts: 20 |
From: Georgina
Date: 04-30-2003, 12:30 PM (12 of 71)
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Hi: I am going to jump in on this conversation on two levels. First off is that I was diagnosed with Tourette's in 1996 at the age of 32, but I have had the symptoms since I was 8!! Very easy to be passed off as something else unless it becomes very disturbing - which mine did - and I am now medicated for it!!! Secondly - my husband, stepdaughter and myself are volunteers with Special Olympics here in Quebec. We deal with all types of handicaps, but have three or four athletes who are autistic. One of our autistic athletes was diagnosed (about 1-1.5 years ago) with allergies to caseine & glutein & sugar! His parents have taken him off of all wheat, processed sugar, etc., etc. He is on a very strict caseine-free/glutein-free diet and what a difference it has made in his personality and his behaviour/disposition!!! Like a completely changed person. Mary - you might want to contact your local school board and find out who the rep is that is in charge of the Special Needs Children in your region. I don't know how it works in other provinces, but here in Quebec, each region has a rep, who works with the schools and the teachers, and the parent committees to best meet the needs of the children. The only reason that I am informed on this is because my stepdaughter has applied and been accepted to college for September in "Special Care Counselling" and we have attended some of the regional meetings this year to give her a heads up of what exists in our community! Hope that some of this info might be of help! Georgina Chateauguay, QC |
User: Georgina
Member since: 04-09-2003 Total posts: 9 |
From: MaryW
Date: 04-30-2003, 12:46 PM (13 of 71)
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Thank you Georgina. I will let my daughter know. Mattie has not started school yet. He needs more speech before he goes. My daughter also found out some school regions are much more inclined to help than others. We have a small, quiet suburb of Halifax that is much more adapted within their schools to helping with kids with special needs. They seem to have more resources and a more helpful attitude than where she is right now. They are seriously thinking of moving. Does this have anything to do with the taxes they would pay in that district or maybe who is on their school board? It doesn't make sense that the densely populated area we are in would be less equipped than the area my daughter is looking at as far as helping Mattie. I think I am just uninformed as to the way things work within the schools.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Sherri
Date: 04-30-2003, 12:50 PM (14 of 71)
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I think it has everything to do with who is on the board and how hard the parents are pushing. That is coming from someone who has very very bad dyslexia. If my parents hadn't fought for me I would have nothing. Sherrri My website
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User: Sherri
Member since: 02-07-2001 Total posts: 357 |
From: Bama
Date: 04-30-2003, 05:48 PM (15 of 71)
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Georgina, I'm glad you posted. I would love to hear about your experience as an adult with TS. I've had very mild tics all my life, but I've never been diagnosed. My hubby said he had never even noticed, but I sure did. I always knew something was there, but didn't think much about it until I saw the same things happening to my son, only much more severe. My son has tried several different meds. After years now, I think he's finally on the right ones now. The tics are still there, but alot less. We just ignore them, but the kids (and some teachers) at school still say things to him about it. By the way, are you a member of the Tourette Syndrome Association? We joined when our son was diagnosed. I find the Newsletters very interesting and helpful. |
User: Bama
Member since: 03-21-2000 Total posts: 2116
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From: MaryW
Date: 04-30-2003, 06:35 PM (16 of 71)
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Does anyone know anything about Asperger's Syndrome? Apparently it is a very mild autism.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Magot
Date: 05-01-2003, 03:06 AM (17 of 71)
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Aspergers is part of the autistic spectrum. Generally the presenters are of very high intelligence, but have dificulty in reading body language, for example they will not recognise that the words and smile don't mean two different things. Telling an aspergers person to 'pull their socks up', will mean that their socks have fallen down. Everything is taken very literally. They need strict routine and have various calming methods which help to control the panic, this may involve touching, smelling or tasting certain items - maybe metallic. When young they can have HUUUGE tantrums and screaming fits and always seem 'odd'. Thye get fixed on one way of doing things and need to continue that through to the end for secuirity sake. Asking someone with aspergers to do something new and alien, requires preparation, talking through. Spontaneity is difficult. Once off the road map, they are in alien terratory and finding your way back is scarey and difficult. They feel like a martian in the playground. It is difficult to explain to a kid with Aspergers that sometimes accidents happen, because if soething goes wrong - it's personal! I have a lot of fights I break up at school because one young chap doesn't /can't recognise that things are not dirrected at him personally. Short fuse. Putting yourself to see the other point of view is extremely hard - there is only on epoint of view! A young man I know who presents with Aspergers , if he is telling you something he needs to finish the whole thing, even if you understood his point some time ago, before you reply. He has fabulous supportive parents who have prayed for him a lot. He is taking his international Bacaleuriate this year and hopes to go on to become a layer. He hugs, cries, laughs and is a wonderful young man. Unbelievably, he did drama at school ( traditionally completely foreign - it is all body language and emotion!) majoring in humour(((((((!)))))) and got an A at GCSE( age 16 national exams). He writes the most tender poetry. (www.geocities.com/rpgwarp/) I could go on... love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626 
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From: Magot
Date: 05-01-2003, 03:08 AM (18 of 71)
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Sorry, either my keyboard or my brain is suffering from speling errors. ( delete whichever you prefer)
love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626
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From: siwian
Date: 05-02-2003, 06:53 AM (19 of 71)
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Mary, I know you said Mattie needs more language before he can go to school-I take it you mean Verbal speech. We use communication picture boards and PECS-Picture Exchange Communication System with several of our Autistic children here. I start with them at age 3 and it is carried on through out their school career if needed. We have a young lady in 9th grade who uses the PECS system. The visual cues really help these kids with Verbal speech as well as social interaction. One 4 year old I had couldnot/wouldnot play with anyone else and would scream at the others if they tried to join him. I gave one child a picture card that had 2 children on it and the words "Can I play?" Told her to hand it to my student. When she did and he read it, he looked at her and said "Okay". Then he moved over and let her work on the train track with him. This opened the door for him and he was able to play more often with the other children in his class. Now he is in 1st grade and doesnot use the picture cues and no longer needs Special Ed. services. Here is the address for Mayer Johnson, the makers of Boardmaker software. http://www.mayer-johnson.com/main/index.html Here is some information on PECS-http://www.pecs.com/ You could also use photos of the objects or activities-especially if you have a digital camera. I usually use a modified version of PECS because it requires two adults for the training process and I usually don't have two available. So I use the individual pictures or an activitiy board and have the student point to the one intended. Although one child just looks at the choices and then will verbalize what she wants to say. I know that pictures don't work for every child. I had one who wouldn't use them. But then nothing works for EVERY autisitic child, the same program or activity doesn't work every day with an autistic child and sometimes it doesn't even work from hour to hour with the same child. But having some kind of visual representation of the abstract seems to help most of autistic people most of the time. This is getting toooooooo long so I will stop. I hope this helps someone. Siwian |
User: siwian
Member since: 12-27-2001 Total posts: 114
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From: Georgina
Date: 05-03-2003, 06:37 PM (20 of 71)
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Bama, My symptoms started as a child - after I had the mumps at age 8. However, they went undiagnosed until I was 31 years old (7 years ago!) My parents were told by doctors that the small tics were due to my allergies - which I also developed after I had the mumps! My eyes were the most telling twitch that I had. However, as I got older, the tics became more apparent in my shoulders and my neck. I throw my neck to one side, shrug my shoulders, one arm twitches outward as if to relieve the muscles, and I unconsciously flex/stretch my fingers/toes. I also pick at my skin unconsciously, although with the current meds I am on, I have quit doing that! I also sniffle/snuffle - however you want to word it, which is my vocal tic. I don't have a "Vocal" tic per se, but anything that is auditory is considered vocal! I have tried various meds over the years. The very first neurologist I saw, put me on a really high dose of meds, without letting my body get used to them, and I was taken into the hospital by my husband and diagnosed with an overdose. I was then taken off of the meds, referred to a neurologist in Montreal who studies movement disorders. He specializes in Parkinson's Disease, but also has a couple of patients with Tourette's. I have tried Rivotril - too many side effects. I have tried Risperdal - I started suffering from Dystonia, so they quickly took my off of that med. I am presently on Seroquel (400mg/day - 200mg am/100mg noon/100mg bed) and Topomax (100mg/day - bed). I take 1mg Rivotril when my nervous system is agitated and I can't get my neck or my head to relax - it calms everything down - but I can't take it if I am going to drive within a 2-3 hour time span because of the calming effect! I don't belong to the Canadian Tourette's Association, but I really should contact them and join! I don't know why I haven't! Just plain lazy on my part - really! I have a dispensation when I swim at the local pool - as I cannot wear a bathing cap because it causes my tics to go crazy. I also have a hard time wearing anything that touches my neck. Am I ever glad that spring is warming up so that I can get rid of my jacket. I only developed these sensitivities in the past 2 years. Sorry that this is so long! I'll post this now! If you want any other info, feel free to ask! Georgina |
User: Georgina
Member since: 04-09-2003 Total posts: 9 |
From: Bama
Date: 05-03-2003, 07:56 PM (21 of 71)
Let me try this again, I just lost my last post so please excuse me if I post this twice. Georgina, Thanks for your reply. It's interesting that you said you had mumps before you started having symptoms. I've read about other peolpe who say that and some that say they had strep infection just before they got TS symptoms. My son tried Risperdal for a while, but he was sleepy all the time and lost weight, so we stopped it. We tried Haldol for some time. I think it helped the tics more than anything else we tried, but he was like a zombie so we stopped that one too. I think it made him very moody too. He had to have some kind of meds or he couldn't sit still in school long enough to get any work done. He flexed his hands and wrists so much he couldn't hold a pencil. Now he's on Trileptal and Reglan. Reglan is actually a stomach medication, I think, but it also blocks dopamine and helps control the tics. One thing that really drove him nuts was HAVING to even things out. He would rearrange things in the house until they looked even to him. If he touched something with one hand (like the light switch), he HAD to touch it with the other hand to "make things feel even". He says he doesn't have to do that anymore. I heard someone describe tics once like this, "It's like letting a mosquito bite you and not scratching it. Eventually you have to let them out" My son would try to hold his tics back at school, then he would really tic when he got home. |
User: Bama
Member since: 03-21-2000 Total posts: 2116
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From: Georgina
Date: 05-04-2003, 07:06 AM (22 of 71)
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Bama, I tend to do the same with my tics - if I am out in public, I do my best to hold them in and then when I am alone, or with my family I let go and tic like mad. However, I am not always successful. I guess you could say, like everything else, I have good days and bad! It is interesting, though, because I talk about my Tourette's at work (I work in a small company - 13 other employees) and they tell me that except for a really bad day, they don't even notice the tics, and then they just ignore them. My boss is aware of the meds I am on strictly out of professional courtesy - in case something happens to me at work. It just so happens that my husband's company is one of our customers, so several of my co-workers know my husband this way as well, should something happen at work that needs immediate attention! I absolutely have to be medicated or I cannot function! I am an absolute danger to myself and to everyone else - especially when I am driving when my tics are out of control! Hence the Rivotril I can take as needed to control my nervous system! I would suggest to you that your son's needing to even things out, and touch things with both hands, etc. might be in the OCD (Obsessive Compulsive Disorder) spectrum, and you might want to mention it to his neurologist, as this might be treated differently than the Tourette's. It is not unusual for a Touretter to have have either OCD, Bi-Polar, ADD, ADHD, or another Neurological disorder. The Seroquel (the same family as the Risperdal) is actually an Anti-Psycotic. The Topomax is an Anti-Epileptic. It is really interesting what different meds will do for different disorders! I am glad to hear that your son's tics are somewhat under control! From experience, they get will get better for periods of time and then they will get a little worse, and then better, etc. This is called waxing and waning! I was on an e-mail group for Tourette's - a great bunch of people - but too much e-mail for me to handle! If you want the address, e-mail me privately - it is a moderated group! <email address removed for privacy>. Georgina |
User: Georgina
Member since: 04-09-2003 Total posts: 9 |
From: MaryW
Date: 05-20-2003, 07:20 PM (23 of 71)
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Siwian, thanks so much for the info. on autism. My daughter uses the PECS system with Mattie. He responds very well some days. Other days are not so good. He is so frustrated that he can't make himself understood.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: MaryW
Date: 05-30-2003, 08:35 PM (24 of 71)
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Did you know that there is an Autism Awareness Ribbon available. It is so cool. www.joann.com has it. Ribbon that you fold and wear as you would the pink for fighting breast cancer. This ribbon has puzzle pieces printed on it. Joanne just pointed it out to me. It's too cool. Thanks Jo. http://stevens_mom.tripod.com/theautisticspectrum/id1.html MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: joannequilts
Date: 05-30-2003, 09:17 PM (25 of 71)
No problem Mary, yours are on their way 
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User: joannequilts
Member since: 12-22-2000 Total posts: 3070 
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From: jcook
Date: 06-13-2003, 01:47 PM (26 of 71)
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I am so glad to have found this forum. I've been away from the board for a while and I have missed it and all of you as well. My DS, 11 yo has OCD and ADHD. We haven't noticed any Tourette's symptoms as of yet, it's interesting how these things are linked. We've just found a great Neuropsychiatrist for him and have learned a lot about what is going on in the brain. DS has just been switched from Celexa (which did help to control his noises and focus problems at home) and he started on Prozac two weeks ago. The doc said that his thinking is that it's basis is an overactive fight or flight response and that if you can get control over the anxiety, the rest of it will fall into place. I am told that it takes 4-6 weeks to take effect so at least the experimenting is going on during the summer. I am hoping that we can get the meds balanced over the summer for him so that the next school year will be a better one for him. Do your loved ones with these issues have difficulties with making and keeping friendships as well? That is just heart-breaking for me to see him get so lonely sometimes. I guess that is why he usually plays so well with his sister but I'd like to see him branch out. All for now, it's been great to find all of you! Jill |
User: jcook
Member since: 08-16-2000 Total posts: 50 |
From: MaryW
Date: 06-13-2003, 02:02 PM (27 of 71)
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My grandson has problems at times. He loves to have friends around, then, it all wears off. He needs his solitude and his room. At school he is quite shy, but he has a wacky personality. He could have friends if he wanted them. I know I have heard others say their children had problems with keeping friends for any length of time. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Bama
Date: 06-13-2003, 09:09 PM (28 of 71)
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My son also has a hard time keeping friends. It's getting better now that's he's getting older, but he still has only one good friend. He can be very hard to get along with. jill, you said your son's meds helped control his noises? Does he have vocal tics? |
User: Bama
Member since: 03-21-2000 Total posts: 2116
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From: jcook
Date: 06-14-2003, 12:41 PM (29 of 71)
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Gosh, I guess so. I never thought of his sounds as tics but now that you ask, I guess that's exactly what they are. DS's current doc dislikes using the actual labels and since we know what is going on, we didn't force that description. The doc (in describing what was going on in the brain) said that when DS was making his noises it was his way of relieving the anxiety building up in his system. He can generally disguise it pretty well by doing cartoon character voices but it does get to be random noises as well. Like it was said earlier in this thread, he tries all day to control it and lets go at home. It is so much easier for me to be supportive of him now since I know what is going on with him. Now it's just a test of my patience to wait and see if his new med will help him out more. School this past year was tough for him as his teacher wasn't supportive or understanding at all. He did like her but I spent the whole year waiting for it to end so I wouldn't have to see her again. Next year, he's in 6th grade and will have 4 different teachers so odds are in his favor that they won't all be like this year's was. Hugs to all of you! Jill |
User: jcook
Member since: 08-16-2000 Total posts: 50 |
From: jennifer007
Date: 06-14-2003, 06:06 PM (30 of 71)
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Mary & All the others with Autism in your family. Glad to hear that they are working so hard with Mattie. I have a cousin with Autism. He is now in his early 20's and he is great! They told my aunt that he would never talk, at age 3, he said his first sentence. Not word, sentence. They said he would never be able to go to school, but he graduated and attends college at the local community college that he pays for his self. He struggles with relationships with teachers, co-workers, bosses, and any one else that does not know him. He works at our local WalMart where he has worked since he was 16 years old. He is as we speak on vacation in Florida, which he paid for his self. These are amazing feats that his parents were told never to expect. His parents work very hard (even now) to help him deal with the real world because they know they will not always be there to help, and want him to be as self effient as possible. They have taught him to budget his money, save for what he wants and pay whatever bills he has. He is a HERO to all who know him. I thank God everyday that he is as inspiring as he is. He has several special gifts that God gave him instead of him being 'Normal', he is even better! Jennifer 
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User: jennifer007
Member since: 05-22-2003 Total posts: 29 
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From: allie-oops
Date: 06-15-2003, 01:36 AM (31 of 71)
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My goodness, why am I just now finding this thread! What a relief! My son is 8, almost 9 years old. He was diagnosed ADHD when he was 5, but I wasn't comfortable with it. In the past year I've done a lot of reading about Sensory Integration Dysfunction, and Asperger's - he has one or the other, but we have not had health insurance to get him checked out. Dh has been off work for the past 6 months. I've also wondered about Tourette's, but he doesn't seem to have vocal tics. From what I've read, both SID and Asperger's can cause physical tics. It's hard to watch him struggle. He has more trouble making friends - he doesn't pick up on non-verbal cues, and doesn't fit in. His brother, two years older, has NO problem in a group. It can cause hurt feelings. He is the tenderest, sweetest child, and I wouldn't change him for a minute. I would so like to be able to help him, though. We decided to homeschool when the boys were toddlers, and so far it's been such a blessing. Our church has a very large homeschool group - 500 families - and we get a ton of support. I do believe that homeschooling is best for my little Sammy - I think he'd be crushed in school - he seems to get made fun of when we go to parks and such. Our homeschool friends know about him, and are kind to him. They know he's "different" and can adjust to fit him in. I do worry about over-sheltering him. He meets an awful lot of people, and tends to talk their ears off, and they shut him down as quick as they can - like the cashier at the grocery store, he'll go on as long as she'll listen. Most people won't, and I don't blame them, lol, they are busy! So we talk about the proper way to handle social situations, but it takes SO MUCH to get through to him. I know there is therapy available for SID, but it's incredibly expensive. The school board here will do it for free if they're enrolled in school, but due to the city we live in, my boys won't be going to school here. Ok, enough rambling, I'm sorry this was so long but what a relief to know I'm not alone! Blessings, to all you wonderful people! Allie "onward through the fog"
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User: allie-oops
Member since: 10-25-2002 Total posts: 282 
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From: MaryW
Date: 06-15-2003, 01:00 PM (32 of 71)
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My grandson has symptoms of Asperger's. I know what you are going thru. He is brilliant, but does poorly in school. At times, there are lots of kids around, then sometimes,he can't seem to fit in or get along with them. He is such a paradox!
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Magot
Date: 06-15-2003, 01:26 PM (33 of 71)
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http://dmoz.org/Health/Mental_Health/Disorders/Neurodevelopmental/Autism_Spectrum/Support_Groups/ has a list of a whole load of autism/autistic spectrum disorders web sites which may have information for you or support groups to contact. love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626
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From: MaryW
Date: 06-16-2003, 03:59 PM (34 of 71)
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www.tonyattwood.com seems to be quite the guru on Asperger's.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: dmoses
Date: 11-08-2004, 09:02 AM (35 of 71)
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Did any of you happen to see Extreme Makover-Home Edition last night? I caught the tail end of it...the family they were helping out has an autistic child, who is also blind. Most of the house was designed around his needs. Both parents are deaf, so there were a lot of special needs. The house was amazing!
Take care,
Donna |
User: dmoses
Member since: 02-22-2002 Total posts: 964 
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From: MaryW
Date: 11-08-2004, 09:38 AM (36 of 71)
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Now, that would have been interesting to watch. Of course, I missed it. 
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Sewhappie
Date: 11-08-2004, 12:18 PM (37 of 71)
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They showed it here in the Cleveland area at noon on Sunday!!!! I missed it because I was out of town, and they HAD TO SHOW the Browns football game last night!!!!!!UGHHHHHHHHHHH I was so mad when I found out that the football game was on!!!!! And they won't show the episode again until re-runs!!!!!!!!!! I did get to watch the Dallas Reunion, was disappointed with it. 
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User: Sewhappie
Member since: 10-27-2001 Total posts: 1427 |
From: MaryW
Date: 04-19-2006, 10:54 AM (38 of 71)
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Just want to bring this up to the top once again. For those of you with kids or grandkids with challenges, this forum is definitely for you.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Magot
Date: 04-19-2006, 11:50 AM (39 of 71)
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I am so frustrated. My daughter wanted her nephew to come to her wedding - we have not been allowed to see him since he was taken into care some 6 years ago - initially because they said that "the family was a bad influence on him" and subsequently because "we never made the effort" it would only disturb him....He has Aspergers. Can't win either way on that one! He is 15 now and I haven't seen him since he was little. Anyway - she sent his carer an invite and he phoned me up - quite enthusiastic. We chatted about Jack and he said the issue had come up at his case meeting and the social worker was unhappy to let Jack come unless we spoke to her first. So over several weeks I phoned her and she was a)never in and b) never returned my calls. I phoned his carer again and told him I couldn't get in touch with her. He phoned her and she called the next day! SURPRISE! As is usual with my dealings with social services with my nephews they regard me as some form of social misfit/pariah and have me prejudged as unsuitable to mix with them before I open my mouth. I always comes as a surprise when I remind them that I worked for them as a foster carer for 3 1/2 years so have had an extensiive background check. They also are quite amazed that I am not the violent criminal, seem amazed that I work in a school and flabergasted when I break the news to them that I have worked with Aspergers kids for 8 years in special needs so I DO know how to make Jack feel safe. Eventually when she had convinced herself that I was either a)not a witch (it was a pagan wedding) or b) a criminal (like his Dad). That my husband is not a criminal (no - 24 years a civil servant and an assistant pastor for crying out loud) that we were in fact, ordinary people she decided to allow Jack to come to the wedding. So long as he could come with his carer and leave if things got too much for him - well DUH like we Want to make him distressed! This was 2 weeks before the handfasting, and I learnt the day before that Jack wasn't coming because his social worker hadn't got round to telling Jack he was allowed to go until 2 days previous. This would not have been enough notice for him to prepare himself so his carer had arranged for him to do something else. We found out because the carer phoned up Gran and Grandad and asked if he could come for a visit and they said "but we are all at the wedding?". They weren't even going to tell us. Katie is spitting fire - it is bad enough that I had to be told off for letting her write to him because all his letters had to go through social services and be read by them first. He is 15 and when asked he said he wanted to come and they just let it slide. So unfair - now he will think that we are not interested anymore. Can you imagine if I wrote to him telling it was Social Services fault that he didn't come via the Social Services office that he would even SEE the letter? I can't imagine how I am going to tell Clive (his dad - currently in prison for an outside the pub fight). Pete, his big brother, the lad I fostered, was really looking forward to introducing Jack to the family and was pig sick but not surprised by social services attitude. Nasty letters will be going to Social services from all corners but if they won't let him out for a family gathering how are they going to let us see him at all? needed to vent there, thanks for listening. love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626
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From: MaryW
Date: 04-19-2006, 12:13 PM (40 of 71)
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Working with the so called professionals can be enough to turn you into a mad, raging crazy person. My grandson was diagnosed with Asperger's over a year ago. Now his mental health worker says he does not have Asperger's at all and that the psychiatrists diagnosed him incorrectly. I said ok, then what does he have? He hummed and hawed and said there were things he could not tell me until my grandson turned 18. What is that?
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: swartzrn
Date: 04-19-2006, 02:09 PM (41 of 71)
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I am finding this thread very informative. My triplet nephews were all recently diagnosed with autism. All males. My SIL and BIL were devastated. We knew last summer that there was a chance that they all 3 had autism and we found out at the end of the summer that it was pretty definate that 2 of them were autistic. The 3rd one just was confirmed as autistic. They just turned 3. Al and I didn't get to meet them until they were 2 b/c they live in Arizona. We went out when his grandmother died last May and I told my SIL then that something was wrong. I thought they may have a hearing deficit. The were not speaking alot so I thought it might be hearing. Anyway, turns out it is autism. Right before this, one of AL's other cousins' child (also a male) was diagnosed with autism--all in the same generation as Sarah. I was concerned greatly b/c it seems that it is quite possibly a genetic trait. Right after this all sorta boiled down, we were told at Sarah's 18 month check up (last Dec) that we needed to possibly have her speech evaluated b/c she was "borderline" as far as speech development delays. I got a 2nd opinion and was told the same thing. I held off doing anything drastic until after the New Year. By the end of Jan, her vocabularly had increased 10 fold and now she jabbers all the time with clear, concise words and a few 2-3 word sentences so I don't feel that there is a problem. We'll know next month what the pediatrician says when we go for her 2 yr check up though. She was born at 35 weeks so I expected some lagging in areas as well. As far as the triplets, they are all different in their degrees of autism. One has an obsession with hair, the other screams and the other is different as well. My SIL had 2 kids before marrying my BIL so obviously their lives are very hectic. She has been very proactive though, reading everything she can get her hands on, therapy in the home and they recently started a school in TUcson so we're hoping that will help things along. I think once the shock wore off, my SIL got herself up by her boot straps and started doing what needed to be done. My best friend's son has autism and she did the same thing--raising him while being a single parent and he just last summer graduated with his class. I put her and my SIL in touch. Hopefully my friend can be of some help or if nothing else, support. AL and I have been very upset about our nephews. I think though it's good all of the community resources out there and it seems like there is a decent knowledge base about autism and loads of information out there at fingertip. Julie
"To see the future, look into a child's eyes." |
User: swartzrn
Member since: 02-17-2006 Total posts: 436 
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From: siwian
Date: 04-20-2006, 06:45 AM (42 of 71)
| swartzrn: I'm sure you know already however, I will mention it just in case. In Georgia, Babies Can't Wait is a program to help with babies 0 - 3 with developmental delays in one or more areas: communication, motor, social, cognitive or adapitive skills. They can provide therapists and assistive technology/devices. The school system provides those services when children turn 3 years old. If your daughter seems to have a delay in speech/language skills don't let your doctor put you off from seeking help for her. (I recently had a child join my class and the parents said their doctor told them to wait until he was 4 to worry about his skills.) We have programs in place for babies because studies have found that the more stimulation you provide for "delays" at a young age the better the chances of the child catching up before they start Kindergarten. And in Georgia, Kindergarten is not the fun, play at learning year it was when I attended. |
User: siwian
Member since: 12-27-2001 Total posts: 114
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From: swartzrn
Date: 04-20-2006, 09:46 AM (43 of 71)
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Actually the pediatrician told me about Babies Can't Wait. Since we're military, things are a bit different as far as insurance, etc. I called Babies Can't Wait (who I was told accepted Tricare) and they said they only provided services for children who had no insurance or were on medicaid. I thought that was strange b/c my pediatrician had told me that was simply not the way they worked...SO--when I got the 2nd opinion about Sarah's speech from a military pediatrician (we're using an off-post pediatrician who does accept Tricare) he told me that Babies Can't Wait did accept Tricare and I'd simply spoken to someone who didn't know what they were talking about. However, he also told me that their waiting list is very long and it usually takes 6 months or more to even get the eval (is that true?) He said that if it came down to my wanting Sarah speech evaluated, then he would put the referral in for me to get someone locally in Columbus and Tricare would pay. After her jump in speech at the first of the year, I decided to wait and see what we were told at her 2 yr appt which is just in a couple of weeks. I think she's doing OK. I did expect some delays. She walked a little later than my oldest child and some things like that. We've really been persistant about letters, numbers and making her talk instead of letting her get away with just pointing at something. I think part of the problem was that we were simply letting her be lazy and not having to talk. She would point and we'd respond. She knew what her cup was and if you said "cup" she'd point to it but when we really insisted (to the point of making her mad) that she say the word, she started doing so. I blame myself for some of the speech delays (well, alot of it.) I cannot believe that doctor would tell someone to wait until the child was 4 to get speech started. It's just common sense that the earlier you start, the better! By the time the child is 4, they should have been talking for a LONG LONG time! My nephews started their therapy a few months after they turned 2 and I think as proactive as my SIL has been at getting them therapy for all of their delays with speech, communicating, sensory/motor skills, etc the better. Julie
"To see the future, look into a child's eyes." |
User: swartzrn
Member since: 02-17-2006 Total posts: 436
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From: Sherri
Date: 04-20-2006, 11:51 AM (44 of 71)
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I probably fit in here. They have been exploring my son from everything. One will say Aspergers the next will say no not aspergers. We finally got a diagnosis of reading, math and writing disorders. I disagree with the reading disorder being that he is an 8 year old boy who can read shakespeare and understand it better then I can a 30 year old woman with a university minor in English. THE whole system is very frustrating. I find that they single out special needs students too much, making it difficult for them to make friends. My son has a very hard time relating to people his own age because he has different interests then others his age (how many 8 year olds do you know that read Shakespeare.) , does not get the whole non verbal cueing thing, has an extremely high intellect and is constantly being pointed out as different at school. Drives me nuts. He is often bullied then accused of being the bully. I have been so close to pulling him out of school. Basically every week I am like is this worth it. It is not!!! This year his teacher is better but last years was a horror and the year before that was not even there half the time. Sher My website
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User: Sherri
Member since: 02-07-2001 Total posts: 357 |
From: swartzrn
Date: 04-20-2006, 05:12 PM (45 of 71)
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Sherri--I had similiar problems with my oldest. She was always well advanced than her peers and often I felt it was a hinderance. Instead of being built up at school (esp in the early grades) she was looked upon as a problem. She was bored silly b/c she'd get done with her work and thus labeled a problem child in school. Then when I would offer to send more work for her to do to keep her occupied or try to help or try to explain what the problem was (boredom) I became the problem. I will never forget being called to school when Elizabeth was in Kindergarten b/c she had said "na-nanny-boo-boo" to another child. This same teacher resented her so much that once when she thought Elizabeth had stepped on a caterpillar, she called Elizabeth a "murder" and asked her if she "knew what happened to murderers." I think that may have been the maddest I have ever been in my entire life right then! We struggled all the way through kindergarten with the same types of things to the point I dreaded sending her to school everyday. 1st Grade was better. The teacher she had then encouraged her instead of making her feel like an outcast and a problem. For that I was grateful. I get so frustrated with the school system when it comes to any kind of special needs b/c they see those kids as hinderance instead of an opportunity to make a difference. When parents attempt to get involved, it often makes things worse b/c some teachers feel like you are trying to tell them how to do their job. Then you have the teachers who welcome parents involvement and suggestions (after all, noone knows the child better than the parents) and try to work with the parents instead of against them. I was very young when Elizabeth was in elementary school. I can look back and see alot of things I could've done differently in dealing with her teachers. I probably didn't stand my ground like I should've and for that I will always be regretful. One thing I did learn is that if you don't look after your child, noone else will. Seeing your child hurt for any reason is the hardest thing in the world. I became angry when things didn't go right with Elizabeth and that teacher and probably just made the situation worse. Julie
"To see the future, look into a child's eyes." |
User: swartzrn
Member since: 02-17-2006 Total posts: 436
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From: paroper
Date: 04-21-2006, 02:02 PM (46 of 71)
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12 years ago, when my son was 6 he was hit by a car doing almost 60 MPH (at least, that is what she would admit.) It is a long story, but at the scene he was combative. During the 40 min. drive to the hospital in the ambulance, he became comatose. Initially we were told that his neck was broken, he was paralized and we should expect serious internal injuries. There was a lot of bleeding in the brain which turned out to be from a closed head trauma to the lower portion of the skull. The break started just right of center and continued across the left side of the skull to the cheek...totally destroying the auditory canal and the nerves that supplied it (as it appeared). After only about 2 hours, they lost my son. They were quickly able to revive him and my tiny child (who was already fair and blond) looked totally white and ashen as he lay on the gurney. Many things happened that night, most nothing short of miracles for which we are sooo grateful. As it turned out, he had no internal injuries, the neck ended up being fine. There was no explaination for the paralysis and he did not have to undergo surgery for the head injury. Within a month we would find out that the hearing in that ear was a little ABOVE average. The blood pooling in the brain was almost entirely gone in 10 days...should have taken more than a year...and the terrible road burns on his back and buttocks were gone within 2 days. All the wonderous things that happened to him still did not take him back to "even". For all intents and purposes, my child died forever on that road. I now had a child with Traumatic Brain Injury. There were marked changes because of right frontal lobe damage...sudden outbursts, anger replaced my marvelous passive child's personality. Since the brain develops in 4 different sections, each developing at a different rate...one wains while another will be in full development...we had some strange consequences of the accident. The first thing we found is that he was in a critical stage for eye development/focussing. Not only did it stop at the place he was, it regressed and for years he could not focus well enough to read for any length of time. The focussing remarkably has continued to devlop and we are grateful to say that it is near normal now. He lost his artistic abilities...and they were really cool...I almost miss that more than he sweet personality. It whiped the slate clean in terms of basic reading skills and all number skills. He couldn't count, identify numbers of objects, match numbers, etc. Since he was in Kindergarten, and the accident was in April, this went pretty much unnoticed until the following school year. He regained his use of numbers by October but it was hard. He did not regain his basic letter skills until April. He has little "working space" in the brain to retain directions. For this reason, he cannot take more than one direction at a time and he cannot prioritize. He has no abstract thinking skills. His recall is remarkable and if you can get the information into his brain in a way that he can remember (demonstration is best), he does not forget. He is very task oriented and if he is class and the teacher tells him to put away his assignment so that he can begin another, he has a hard time switching tasks. All that aside, my son will graduate high school this May. He is a marvelous kid with many friends who have supported him through all the difficult times. He was able to get into the high school with a lot of struggle but as time went on, advanced math and science became too difficult. We are fortunate that the Vocational Technical system was there to answer our needs as as he graduates, he will has a lead on several places he can go to start as an electrician. We had a lot of problems with getting my son "classified" as disabled in the school system. We knew from the beginning that he could be classified but we were unable to have him tested because, although our car insurance would pay 100% of the testing for 5 years (and supply and needed therapy), the doctor had to recommend it. Not only was our doctor not of the calibur to recognize it, our HMO would not allow a second opinion...eventhough a recommendation could allow the car insurance to pay for it. The school system would not test him because in our state, a recommendation from them meant he would have to be tested by the school system. It took us 5 years to get him tested and classified. My concern was that not only would it allow him certain special "helps" as he got older, but that if, because of his disability, he became ineligable for sports, or other exciricular activities, with the classification, he would still be able to participate, something that I felt could give him reason to stay in school. The testing has made all the difference and has made him eligible for vocational rehab should he decide to go on to a higher training. One of the things that also made this important is that he looks like a strapping young man and he seems very normal. Without the classification, when he starts running into problems, the teachers don't understand. Things like unusual stress before band contests, sudden changes are very difficult on him and he often gets vocal or needs to walk of his frusteration. At the other end of the spectrum, his sister is academically gifted. We've also had to fight to get her classified....another long story, but the cream rises and this ended up being much easier than my son's problems. While she scored in the 99 percentile on the Iowa test (a little hard to ignore), her brother scored in the 15 percentile in math (ouch)...I think that the score was because of his eyes. pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: paroper
Date: 04-21-2006, 02:06 PM (47 of 71)
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I guess that what I most want to tell you all is that for the most part, these kids will grow up and most will be able to find their place in society. There are times when it doesn't seem possible, but it will happen. Have faith. As an education major we were required to have hours in special ed. The most valuable thing that I learned in that class was that kids are labeled while they are in school but when they get out of school they find their rightful places in society and loose those labels. pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: Sherri
Date: 04-21-2006, 02:33 PM (48 of 71)
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The biggest problem i have is getting him to live up to his potential. The school expects nothing of him. Therefore he gets away with doing the minimum where everybody has told us that he will do better if we expect alot of him and give him modifications like a computer to help him acheive them. So how do you get these extraordinary children to be the best them as they can be. Sherri My website
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User: Sherri
Member since: 02-07-2001 Total posts: 357 |
From: paroper
Date: 04-21-2006, 02:42 PM (49 of 71)
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Well, the first thing is to teach them that the same is expected of them as the next child. If you don't set high marks, they won't work to get there. Yes, it is very hard. It is very hard when your son comes home after a particularly hard day and tells you that it isn't fair that things come so easily to his twin sister and are so hard for him. When that happens I would have to remind him that he has talents that she doesn't have and that she does work to get her grades. Sometimes you want to cry with them...but I think that you need to sympathize, help where you can, and remain adament that they achieve. I've had meetings with every teacher, every coach and they all knew not to treat him all that different. He was mainstreamed in school and I really think that helped.
pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: swartzrn
Date: 04-21-2006, 03:37 PM (50 of 71)
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Pam, first of all, your story brought tears to my eyes. It's been my experience with head injuries and dealing with them in the emergency room setting is that you always expect the worst and pray for the best. You never know what to expect and because the brain is such a complex organ, each part with it's own task, you really don't know what to expect. It sounds like your son, although not the same as before the accident, has excelled and I know he could not do this without the love and support of his family. I cannot imagine the hurt you have been through --It's obvious that your son does have many talents and you have encouraged and aided him in channeling them in the right directions!! I think children are the most remarkable and wonderful parts of our world and the biggest mistake we can make is giving up on a child. I have made so many mistakes as a mom and I know this. It's easy to look back and see those mistakes and wish you'd done some things differently but I also think I did some things right. I feel bad for my oldest sometimes b/c during her "child" years, I was still a child myself in many ways. I did work hard and get myself through college and then threw myself into a career. I didn't have the opportunity to stay home with her like I did the little one or do some of the things I have been able to do with Sarah and those years are gone with Elizabeth and never will be given back me. Julie
"To see the future, look into a child's eyes." |
User: swartzrn
Member since: 02-17-2006 Total posts: 436
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From: paroper
Date: 04-21-2006, 04:12 PM (51 of 71)
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I think that the hardest part about Greg's life is that we were told that the brain was bruised. No one helped us understand what that meant. I just wish that someone along the way had explained that he would never come back. I wasted several years waiting for him to come back to us instead of dealing with the person he was to become. If I had understood what that meant, I think that I would have adjusted and responded to his needs sooner. We were so fortunate that he was in school and that he has spent his entire life with for the most part, the same kids that were in school with him when it happened. There are still parents in his class who think of him as the kid in the helmet because he wore one for over a year. Greg was injured on Monday night, woke up from his coma on Tues night, out of intensive care by Thursday, home on Sunday morning, in church Sun night, at the doctor on Monday and at his request, back in school on that MOn afternoon (he was in afternoon kindergarten). It was such a whirlwind experience. The most exciting thing was when he woke from the coma. He was alert enough that although he was on the respirator he indicated that he needed to be repositioned. I, not knowing that he had just awakened (I knew that he had suddenly sat up that afternoon while I was on the home-shift), went to get a nurse to move him. When she realized that he was awake, she called all the doctors and emergency people who had worked on him. For the next hour and a half or so we had a steady stream of visitors wanting to see for themselves that he was awake. On Thursday after the accident, we visited all the two ER's and the ambulance service to take gallons of home-made carmel pop corn and a thank yous to all that gotten him so far. It was a far cry from the night the officer told me that he would be dead in hours and needed his clothing for evidence. pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: bluebirdie
Date: 04-21-2006, 04:47 PM (52 of 71)
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Let me apologize first for posting here because I may not belong from the experts point of view. But my heart goes out to all of you who has that someone special in your family. In almost every generation of my family, there is a special child. While all other kids and family members are normal, these special child would demonstrate borderline autism symptoms during their childhood. This is a family that also believed that childern should not be subject to medicines which would polute their body. Through generations, the family treats all these special kids like normal kids despite of the difficulties they endured. None of them were subjected to isolation other than the mental isolations the kids chosed for themselves. None of them went to special school. None of them were subject to medicine or treatment. It's not a pratice I personally support nor endorse but I am not the mother to judge and decide. Remarkably almost all these special kids in my family developed very strong learning ability in numbers & math etc in an early age and were encouraged to pursue that path. Now they all live a normal life. Among those special kids: my uncle is an engineering PHD from UCLA, I have advanced degree in engineering, my nephew jumped grades in school largely due to his strong learning ability towards math. We learn what normal people do and eventually catch up. My uncle is still called "slow" by strangers sometimes. But most people outside my family can not even tell any difference most of the time. I am grateful of the life I have. I count my blessings everyday. Now back to my sewing. - Robin
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User: bluebirdie
Member since: 03-12-2006 Total posts: 139 |
From: swartzrn
Date: 04-22-2006, 04:01 PM (53 of 71)
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I think we all have situations in our lives and people in our lives that make us thankful everyday and truly count our blessings. Pam--I am sorry to hear they didn't elaborate and help you understand the extent of your son's injuries..bruising can mean several things and several levels of severity however it seems they should've realized b/c of the mechanism and impact of his injury just how bruised he was. I have always said that education is the key to anything..Part of being a health care provider, in my opinion, is education (both keeping yourself educated and being able to help family members better understand a disease process or results of an injury.) It truly sounds like your family witnessed a miracle. Julie
"To see the future, look into a child's eyes." |
User: swartzrn
Member since: 02-17-2006 Total posts: 436
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From: MaryW
Date: 04-24-2006, 11:43 AM (54 of 71)
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This may be of some help to those with kids and sleeping problems. I know my grandson loves his. http://www.myweightedblankets.com/make_your_own MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: MaryW
Date: 04-24-2006, 11:50 AM (55 of 71)
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My grandson has every symptom of Asperger's yet his mental health worker says "definitely NOT" because he has a sense of humor. I can't help it, I don't agree with him.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: DorothyL
Date: 04-24-2006, 12:07 PM (56 of 71)
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My niece has been diagnosed with Asperger's and she has a sense of humor. It isn't always appropriate -- but whose is. You know how people with Asperger's tend to get obsessed with things. She loves old movies -- from the 30s, 40s and 50s -- and the stars from that time. I love talking to her about it. She loves it too because it embarrasses her mother and her grandmother -- who she and her mother lived with until she died -- thought it was silly. Sometimes she calls just to tell me about a movie she saw. Dorothy |
User: DorothyL
Member since: 12-09-2002 Total posts: 3883 |
From: Magot
Date: 04-24-2006, 04:38 PM (57 of 71)
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My friend Peter with Aspergers got an A in his GCSE English Drama majoring in Drama - all things Aspergers kids are not supposed to get. He is now at University doing creative writing - hang on - he shouldn't be able to do that either.... I thought the whole thing about Aspergers was that it is a SPECTRUM and no one child will tick all the boxes - for goodness sake does this mean they will limit his help at school, Mary? Because he doesn't fit in a hole? love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626
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From: bluebirdie
Date: 04-24-2006, 07:03 PM (58 of 71)
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Well... 90% of my coworker are geeks. Sometimes I think none of them have a sense of humor despite of their normality. Then, who is to say who's normal? I never knew what help in schools mean. In the old days, no scholarship was ever considered for special kids. As a result, we had to act normal in order to accelerate. It was difficult for me to post in this topic as I do not wish to offend anyone. But since I already broke my rules, might as well go the whole way. And because I'm a grown up now, I want to say, me me me me me! A few decades ago while I was growing up, I would go to school then stay home along after school, all the time. My folks were never home. Our life centered around our parents, not us the kids. My mom didn't spend time with me and rarely worried about me. But I was content because they always made sure there's food on the table, a roof over our heads, and my basic education was paid for. After that's taken care of, "I" was the one who's responsible for my future, not them. During those days, teachers also faced different expectation. No one really cared that it took me many weeks to learn how to spell the word "flower". No one cared I had to study 20 hours a day just to get good grades on literature or history. No one cared about my challenges while considering or granting my scholarship. And guess what? There may be normal kids out there who also stuied 20 hours every day. This is by no means to put down anyone who only wants the best there is for their special kids. Afterall, help is available today. I am just so thankful that it's been a great journey and I enjoy life even more knowing I did my best. No amount of pity would have gotten me anywhere close to where I am today. Also I am not saying parents or teachers had it easy decades ago, nor saying today's kids are so much luckier. I don't even have a kid. However, I hear "I want" more than "I will" from today's kids. I just thought there's so much expected from today's parents and guardians whose life circles around their kids, as if the adults have no life of their own. Because parents put so much of their life on the stake of their kids, every fall and every childish outburst tend to hurt so much more. The parents today are really the ones challenged, no matter how special or normal the children are. Whew! I am not really being supportive, am I? Again, I'm not very good with words. It's not my intension to offend anyone and I'm really sorry if this does. - Robin
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User: bluebirdie
Member since: 03-12-2006 Total posts: 139 |
From: Magot
Date: 04-25-2006, 01:40 AM (59 of 71)
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One of my frustrations is that in our academic word based society, those who are not word based for example dyslexics are seriously disadvantaged when all they are is wired differently. There is nothing wrong with that - they have a completely different skill set which in a different society would be the advantage over the 'academics'' Who are we to judge waht is normal and what is not - we are just people with abilities. love and kisses, Jan
Guts-R-Us Cells a Speciality DNA to order. |
User: Magot
Member since: 12-22-2002 Total posts: 3626
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From: paroper
Date: 04-25-2006, 05:15 AM (60 of 71)
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I have a lot of friends and there probably isn't a "normal" one in the bunch. There is so much more expected of our children today than when I was in school! My kids kids (and soon my grand kid) attended the same school I did. By the time they are out of kindergarten they will have already covered everything I did up to the third grade except cursive writing. That includes making change and telling time. The schools are so bound by making certain high points that many of the classes spend more time teaching the kids to master the end of schoolt tests than what they will need to survive. If you are a kid who doesn't test well, forget it! My girls have had Algebra I,II,III, Geometry, Trig and could have taken Calculus. While they had Advanced Biology, Chemestry, Physics, AnatomyI & II....could have taken Botany and Zoology. Most of these things I never heard of when I was in school....didn't know that they existed until college. These kids are taking these courses and getting college credit for soime of them. While this is great for college bound students, it leaves the kids with certain disabilities in the dust because there are no alternatives for them. My son who does well with concrete things took geometry and we hit the wall. Why? Because they spend over have the semester discussin circumstances and expected effects. In her words, "The sky is blue it will or will not rain today, discuss your answer." What does THAT have to do with geometry????? He ended up in Vo Tech because he couldn't understand. This course was a requirement for high school graduation...and he had to go through HER to get it here. Is it a wonder that parents fear that their kids will drop out...discouraged???? When you are not doing well in these courses or they are almost impossible for you, sometimes the only thing that will keep you in school are the extra cirricular activies and your friends....and it is hard not to become one of the outcasts when this happens. So.....what happens, you don't make the grade and the only thing that is worth going to school for is taken away because your grades don't measure up...almost forcing you out of school!!! In our school, if the kid is pegged as challenged, the one tie that keeps him in school is less likely to be taken away. My child has to learn to function in the outside world and it won't necessarily be easy. He does have certain handicaps. However, He needs as many skills as possible and he needs the high school diploma because the person who hires him doesn't know about today's cirriculum and there are plenty standing right there with him to take his place who have their degree. He got the geometry...and he did well in it...the old fashioned kind. He took it in conjunction with the electrical course work at a a vo tech. May 18th is graduation!!!!! pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: MaryW
Date: 04-25-2006, 05:18 AM (61 of 71)
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My grandson writes the best science fiction! A few years back one of his teachers said he should have had one of his stories published, it was that good. However, he wouldn't let anyone but the teacher read it.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: paroper
Date: 04-25-2006, 05:19 AM (62 of 71)
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By the way, when I was in grade school we started at 8:30 and got out at 3:15. We had 15 min outside morning and afternoon and 45 min at lunch for playtime. My kids started at 8:05, got out at 3:20. They were allowed 20 min at lunch to eat and whatever time they had left they could spend outside....that is IT...starting at first grade. Kindergarten which was 1/2 day got 15 min at the END of the session. The kindergartens have been extended to a full day (who knows what that means for cirriculum and my dgd will start pre-K next yeat to get ready. My kids used to come home so mentally tired and physically wired after school. I think this is terrible. The kids need the time out to be kids! pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: paroper
Date: 04-25-2006, 05:32 AM (63 of 71)
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Mary, that is wonderful! One of my sister's college roommates is a very famous Sci Fi writer! (I wouldn't exactly call her ordinary either!) She has made a handsome living doing that! I'm glad that the teacher is encouraging his skills. Not only does it help him develop his talents but it also does a lot for his self esteem! Someday he may be famous and wealthy too!!!!
pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
From: trini
Date: 04-25-2006, 10:51 PM (64 of 71)
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I have not been on this forum for some time; I almost missed this interesting, informative, and comforting forum. I have not been able to read all through,(over busy) but have referred the sites you posted to others; I intend to catch up over the next few days. Thank you. Trini. |
User: trini
Member since: 09-17-2005 Total posts: 74 |
From: mommydionne
Date: 05-13-2006, 03:17 PM (65 of 71)
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Mary, sounds like his mental health worker is a bit egotistical and has a chip on his shoulder regarding the psychiatrist's opinion. You can have a sense of humour with Aspergers (what a LAME exclusion criteria, not in the DSM IV as far as I know, unusual sense of humour, yes). Also he can't tell you anything about their private sessions, 18 or not, unless your grandson gives him permission. Unfortunately NS is terrible for children's services for both ADHD and Autism. It's too bad b/c there are some amazing people at the IWK but they are not enough to go around for our population. I have met people who have had the military do compassionate postings to other provinces b/c they could not get the services they need for their children. As far as I can tell, ON (ottawa area, the CHEO programme is fab), BC and AB are the places to go for good intergrated sensory programmes for autistic kids. As for ADHD, that's rough, my eldest is ADHD and I have stopped telling teachers b/c they just label him immediately and he is a likable kid but SOOOOO distractable and figity it is unreal. The neurologist said he would do ok in the long run but we may pull our some hair on the way . He gets that from me, sigh... I score borderline on the conners scales 
Jeanette
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User: mommydionne
Member since: 01-08-2004 Total posts: 838 
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From: MaryW
Date: 05-16-2006, 10:06 AM (66 of 71)
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I know you can have Asperger's and a sense of humor, it is just weird humor. It just shows how the patient and family get off the track sometimes. We are now looking into a new psychologist and maybe we will get a few answers. I can't tell you how unnerving it is to have a diagnosis and then have someone who adamnantly argues with it. Furthermore, will not give any further information on what he does perceive to be the problem. MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: Kari Wise
Date: 05-16-2006, 04:40 PM (67 of 71)
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Hi ~ I am new to this web site. I have 4 boys (14-12-7-6) My 12 year old is Autistic. I think that this support group is a great idea!! Looking forward to getting to know everyone. Kari
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User: Kari Wise
Member since: 05-14-2006 Total posts: 2 |
From: MaryW
Date: 05-16-2006, 05:53 PM (68 of 71)
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Hey Kari, you made it! We are here to support one another. We certainly don't have all the answers but we do supply a shoulder to cry on and sometimes a giggle or two.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: NDNQuilter
Date: 05-31-2006, 06:43 AM (69 of 71)
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Thanks for starting this group. First let me say I've been in Special ed. for 28 yrs and have recently gotten out of the classroom. I'm just tired. The following has been my Arkansa, Colorado, and Tx experience. Anyway, If your child or grand child attends public school, the school must provide what the child needs to help him/her grow and develope. Make sure you educate yourselves on your childs problems so when you go into the ARD, (Admit, review, or dismiss meeting to place child and develope IEP which is an individual educational plan) you will get the services you need. It can be intimidating. There will be a reg. ed teacher,parent and who ever parent wants to go with them if anyone, principal,diagonstician, spec. ed. teacher, and anyone else the child might be in contact with throughout the school year, like speech,ot/pt etc. If you want your child to use PECs (picture exchange communications) or a comunication board where the child presses a picture with a prerecorded voice that allows your child to say bathroom or drink for an example, voice it at the meeting and get it in writing. The school must provide what ever is in the ard even if it is a one on one aide. Voice your concerns and don't sign off if you don't agree. Most schools do what ever will make the parent happy if they see the parent knows what's available for the child. Sorry to be so long winded but I've set thru ards and felt helpless and had to learn that as a parent and teacher, I am in control of what the child gets from the school. It can sometimes cost the school more money than they want to spend so they may not actually bring it up! Know your child, educate yourself, and you should be able to settle on what is best for your little darling that will help them grow into the best independant person possible. Check in with the classroom regularly, get to know the teacher, and see if they are providing the walker or visual aids,etc. what ever was put into the IEP. You know your child better than anyone so educate yourself and go after the best for him/her. I have a wonderful son who is severe needs Down's with autistic tendances. Jeff is 18 and functions on a k-1 level in most things, higher in others. He's a joy. I have had to fight for things in some public school for him. We have used all communicating gear out there that I'm aware of and have settled on sign language and voice. His speech is bad and even though we at home speak fluent Jeff sometimes I have trouble understanding him, that's where sign lang. helps. Jeff has 4 more years in high school doing transitional studies like learning more life skills and job training. This has been a good year at public school for him.One more thing, if your child is aggressive, like mine can be, during the ard ask for a BMP (behavioral management program) this will assure that all steps outlined in the bmp have been taken before more severe steps are administered. Whew! I feel much better. Have a great day. GENA, WHO USUALLY NEVER TALKS SO MUCH!
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User: NDNQuilter
Member since: 10-04-2002 Total posts: 90 |
From: MaryW
Date: 05-31-2006, 07:48 AM (70 of 71)
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Gena, you need to talk more. This is excellent advice, thanks.
MaryW
owner/editor of Sew Whats New |
User: MaryW
Member since: 06-23-2005 Total posts: 2542
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From: paroper
Date: 05-31-2006, 08:47 AM (71 of 71)
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The behavior can be a problem. With the particular type of brain injury my son has (right frontal lobe) it is difficult for them to control their outbursts. We've found that problems can come from the most unlikely sources. We went through several months where another kid in a gang decided to come after my son. You wouldn't think they'd go after a kid that was 6'4 in the 8th grade, lifted weights and built like an adult football player. I think it is because he was the leader of a group of really good kids and it was a territory thing. He received a lot of support from his friends and all the encounters were diffused. They didn't want to deal with a group, eventhough one of the group was found alone and he ended up in the hospital. Another time his sister was being stalked and harrassed by another kid. He managed to take care of it without violence (THAT really came close). Kids with his type of injury can become stalkers themselves, esp. during the puberty, so we were happy that things came out as well. When his girlfriend of over a year suddenly broke up with him and ran off with the manager of the store where she was working we were a little worried. It also happened only one week before prom. He handled it better than most would, but was understandably hurt. As each of the crisis have come up we have come to realize that he can handle things that sometimes a "normal" adult cannot. This gives us reason to hope that he will be fine. One thing that has been a big help to us and would probably be a big help to others....he was warned several times by specialists that people with his problems could NOT afford to drink or do drugs because their brain would not "fire" the same as a normal brain under their influence. The people who talked to him did it in a caring and concerned manner...and he respected them. It has been a real help as time has passed. Although his friends are not "into" these things, the opportunity is always there. He has made good choices in friendships and in life decisions. pam
Bernina 200e, Artista V5 Designer Plus, Explorations, Magic Box, Bernina 2000DE & 335 Bernette Serger, Bernina 1530 Sewing Machine, Bernina 1300 DC Overlock (with coverstitch) |
User: paroper
Member since: 02-03-2004 Total posts: 3775 |
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