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QUASIOR SparkPoints: (9,005)
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Posts: 167
5/7/12 12:16 A

It took me 11 years to find out what was wrong with my eldest daughter. Even now, it's still somewhat of a puzzle. She had 'universal development delay', angry outbursts, extreme affection until it was uncomfortable. Hurt herself and left scars, head banging, and lots of other symptoms. We had her to the paediatrician on and off all her life. No real firm diagnosis at all. She ended up having petty mal seizures, which made it difficult if not impossible to learn. What a confusing situation she must have been in, she'd faze out dozens of times a day, and b/c it was less than 10 seconds we never really noticed. On the current meds she's good, her happy self has returned. She's on the Autism spectrum, but on the meds it isn't pronounced.
This was a whole lot of fighting on my part. I even had a young paed trying to make a name for himself by a whole misdiagnosis which lasted over 18 months, in which I never brought into. (He wanted to diagnose her with 'small head syndrome' because she was so small) Extremely frustrating. You have to keep fighting, to find a doctor that works with you not against your intuition. She also stays off gluten now too, which helps in other ways.

I hope that any of my story helps you. Main message is: you're not alone, and you have to stand up for your boy in the cold clinical world of doctors, b/c no one is as invested in him as you are. Trust your instincts. I had to teach my daughter how to read! I have to teach another son who is 9 to become hygienic too, he poos himself regularly, and I know it isn't pleasant. You literally have to retrain them. He hates cleaning himself up - which is also difficult. He has no sense that is inappropriate, he also is epileptic btw. It IS hard work, and it falls on our shoulders as mothers to do it.

ANDILH Posts: 1,543
5/6/12 10:01 P

It might be important to decide now what his progress is supposed to be, instead of someone saying that he didn't meet some imagined goal on someone's part. Especially when dealing with school systems and IEPs - have measurable goals that are reasonable and attainable for you child. My 28 year old sister is severely multiply impaired with a cognitive age of about 15 months old. She wears diapers, has a feeding tube, and was lucky enough to attend school until age 26 (we live in MI). I've sat in more IEPs than I can count, both for my sister and for countless other children in 5 different school districts as an advocate for the family.
Being marked mentally retarded is not the end all be all. A child can be diagnosed as a young(ish) child and have that diagnosis changed when they are older. Also, a more severe diagnosis may give your son more services that will help him progress and have a lesser diagnosis.
In no way am I trying to diminish your feelings about the situation. I have a friend who's 8 month old son is only developmentally at a 3 month level. I've been helping her through it...starting with encouraging her to seek professional assistance and then to sort through what those professionals have told her to find out what is best for her family. Her son has already made progress and she's starting to feel less overwhelmed.
Also Nana, usually children with Autism are not socially adept as the original poster's son seems to be. Autism is just the newest catch all diagnosis when clinicians need to tell a family something.

HOMEBODY Posts: 1,432
5/3/12 7:41 P

Your son sounds like a real treasure of a child. I am a special education teacher. I taught high school kids with intellectual disabilities for 10 years, then taught high school learning disabilities students for 7 years, and I just found out last week that I will be going to the middle school next year to teach kids with intellectual disabilities. I couldn't be happier !
It sounds like you are doing everything right. Just make sure you carefully monitor what's going on at school, make sure he's happy and that he's getting everything you think he needs. There are some other disabilities that get more attention, but your son is every bit as special and important as kids with the more publicized disabilities.

RED7979 SparkPoints: (0)
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Posts: 17
4/27/12 12:29 P

I have a 5 year old son with Autisum, and its hard to come to terms with having a child with a disability, your hopes for the furture have to change. But has with any child the more you put into them the more they are able to give back. Its hard but its all about helping them to be the best they can be and not what we think they should be.

JADOMB SparkPoints: (134,622)
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4/24/12 2:45 P

It is sad to see the extra challenges that so many families and children are finding themselves up against these days. As a substitute teacher that works with k-12 I see many of these children and their families. We are fortunate in the country that there are so many areas where help can be found. It's not always the easiest to get into or through, but they are out there. Also, with so many cutbacks in education, even these areas are being hurt. But they are still out there and they do their best to help.

That being said, it is still up to the parent to do everything they can away from these schools to help their child. You will have to not only learn what all other parents SHOULD be seeking and learning, but going the extra mile to educate themselves about their child's disabilities. The schools can only do so much and they can NEVER be the replacement for the dedicated parent.

I have seen all degrees of failures and successes. I have seen where a child had minimal disabilities but virtually no structured home life and they did not do well. I have seen where a very disabled child had parents that did 100% of what was possible and their child is as successfully as they can possibly be with their disabilities. It's tough, but it works. Just like with kids that have no disabilities, one can only expect as much out of them as one can put into them. BE PROACTIVE and INVOLVED with your child during their growing years, and you will reap the benefits once they are older. Keep the Faith.

4/22/12 6:33 A

I too, think he should get tested at a Developmental pediatrician. It may take months to get in but they will give you answers you need, He sound like he could be autistic and once he is diagnosed then he can get additional treatment and therapies needed. My granddaughter has autism with some underlying psychiatric diagnosis. My daughter took her to many psychiatrists who each had different diagnosis but not on of them wanted to diagnose Autism (most psychiatrist in our area won't). The last psychiatrist suggested the developmental pediatrician. She is a very intelligent, very loving and beautiful girl who is now doing well. She goes to speech and social therapy outside of school and has help in school as well. She is in honors classes in middle school and has started playing the cello (like her big sister) had her first concert and did very well. I'm telling you all this not to brag about my granddaughter (but I love to do that) but to give you encouragement. It is always easy but well worth it to do everything you can for your little man. Wish you much encouragement

ZUEPEA Posts: 112
4/20/12 10:23 A

Thank you so much! I'll have to look into a developmental assessment specialist. I know I took him to be tested at the neurological center, Esperanza, the school and with his doctors, but I never heard of a pediatric developmental assessment specialist. I'll have to look into that. Thank you.
Your child sounds like a real gem! My son would have loved to play with him and yab about trains all day long to him. Sometimes my son is a bit shy, but most times he is so playful and loves seeing other kids. I am fortunate to find the school he is in now because the teachers and kids are quite accepting and kind there.
I know what you mean about the potty training. I have to watch my son too and constantly remind him every so often. I can't quite figure out when he does it yet sure enough he comes home from school and soils himself with feces. He says it goes in the potty yet still soils himself. Though lately when I reward or punish him for it he has been doing better. He loses some computer time if he soils himself because he wants to play and not go potty. And he gets a lolly and computer time when he does go in the potty. I don't know why but for some reason that's working so far and of course my constant nagging hehe.
Our kids are amazing. They defy the words of others and come out on top every time. I'm so glad your son is laughing and happy and denying others doubts. I hope he finds a friend that takes the time to see how terrific he is. It has to be hard when others stare. I get the 'your son's so smalllllll' all the time and get irritable or sad about it. I feed him and he eats and snacks all day yet still is a seven year old that wears five year old clothes and is about 35 pounds. Sometimes it peaks up one pound then drops again. He's been this way for years and I've been through test after test with him on it. Yet it's the way he is. I know our kids will have hard times, but they got us to back them up. You're a terrific set of parents and he's blessed to have you. As mom says to me all the time; he was meant to be my son because I'm what he needs. I'd like to think she's right. And besides I'm rewarded the best gift of all, his I love you's and hugs. Best of luck to you and your precious boy!

FAT_SUZIE SparkPoints: (0)
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Posts: 4
4/20/12 2:27 A

Hello, My baby boy is 5 years old now. He was born at 23 weeks gestation. Being so incredibly premature he suffered a grade IV intraventricular hemorrhage with periventricular leukomalacia. Which basically means he had a massive brain bleed on all four lobes of his brain and in between the lobes as well, and the blood put pressure on his brain so he has brain damage. Which caused cerebral palsy. And he is mentally retarded as well. I know the term mentally retarded is no longer politically correct. But I didn't like it when they told me my son was 'developmentally delayed' because that implies that he will some how be able to catch up with his peers eventually. As if his problems are mere delays. When the harsh reality is that his cognitive ability is impaired and he will never be able to catch up to his peers.
That being said, My son continues to astound us every day. For a kid they said "wouldn't make it through the night", he sure is doing well!!
He is trying to potty train. And I think it's more Mom and Dad who need training, because if we just remember to put him on the potty at the same times every day, then he does fine. Consistency is the key. Our son doesn't speak either. So he wont ask us to go to the potty.
He can not walk either, so he wont go to the bathroom on his own.
We just have to 'know.' And we aren't perfect...So we do the best we can. :-)

It's awesome that your son is standing up to pee! He sounds pretty great!
My boy is like that too, as far as the sweetness and how loving he is.
And yeah, I totally know what you mean about how wonderful it is when you find a child who is willing to play with him!!!!
Most kids just stare at him and look at me like we are some sort of freaks.
And he wants to play sooooo bad!!!! He will get so excited and try to call out to the other kids, but he can't speak, so he just makes noises. Which causes them to stare. So I speak right up for him, I will say to the other kids, "He can't talk, but he wants to let you know he likes watching what you're doing and would like to play too." It's heart breaking.
Especially when we are out and he's in his wheel chair and has his AFO leg braces on. We get stares all the time! I don't mind the children starring, they just don't know any better. It's when the adults are starring that it bothers me. I suppose they just don't know any better either. ;-)
Anyway, It sounds like you've already been through some screening processes.
But I will go ahead and offer help to you, or anyone who wants more information about how to go about getting your child seen by a qualified pediatric developmental assessment specialist. Not just a regular pediatrician... The Pediatric developmental assessment specialist is just that, a specialist. And they can help you with referrals to all sorts of help with a special needs child. I would have been completely lost with out their help~!! And my regular pediatrician didn't know where to send me either. So I was very grateful for the specialist!!!

ZUEPEA Posts: 112
4/18/12 12:02 P

My son didn't realize his name was Jordan until a year ago. I don't know why when we called him that all the time. And for the longest time every picture of a baby or boy he saw he would point to and say it was Jordan. My son is dirty blond, pale skin, with blue eyes. He pointed at a dark haired tanned skin boy with brown eyes and said Jordan.
My son can't read, he barely reads small words if that. He can't hardly count to five and still skips numbers sometimes or scrambles them. He's good with a computer for the most part though.
I'm lucky that my son is quite social actually. He loves being with other kids. They hardly understand him but he loves to laugh and play. And right now the kids he knows are such sweet dears they love to play with him. So I'm lucky on that account.
So far my son is going potty better yet he still has his accidents. I tried the rewards I try the reminders and now I tried a lot of different things. He knows it goes in the potty yet sometimes still he goes in his pants. Yet I have hope and he is getting better. He went potty this morning without me even asking! Yay!
I've had my son tested at different clinics and looked into. So far they all say the same. Yet once again I have hope. My son is making steps, though they are small ones. He is still making them :) Thanks for your message. Sorry I've been so busy I haven't written until now. Best of luck with your son! He sounds great!

NICHOLE_4 Posts: 1,354
4/4/12 2:29 P

My youngest son Cole is 5 and was diagnosed with Autism when he was 3. He had never spoke a word til the day we went for the testing and he said "Go" I cried. There are aspects of your son that I see in Cole, he loves blocks and building things, he also loves electronics.

Cole doesn't do well on standardize tests because he doesn't always cooperate. He can read, counts to 100, and is very technical with his mind.

Cole is yet to be potty trained, he sits on the potty but will NOT go, it drives me crazy! This is a struggle that we are working on. He also is not sociable with other kids, except his brother. Eye contact is limited.

I would encourage you to find out more about your son's disability, he doesn't sound mentally retarded to me, but rather a poor tester! Good luck and feel free to email me

ZUEPEA Posts: 112
3/21/12 6:08 P

Hello I'm a mother of a seven year old boy. He is my one and only child. His name is Jordan and he has been marked as intellectually disabled. If in two more years or so he does not show progress or much of it he will be marked as mentally retarded. I'm just wondering if there are other parents out there going through the same journey as Jordy and I are.
Let me tell you a little bit about my treasure. He is incredibly smart when it comes to trains. He is obsessed with them. Ever since before he turned one. He still has trouble talking and getting his point across. Yet I as his mom understand most of what he says. It can be frustrating for him when he feels misunderstood or not heard and then he blocks out. He seems to just draw on a blank look and go into a different zone. I've been told this might have to do with his grand maul seizures he's had.
My son is still learning to poop in the potty. He pees standing up. Even though he's never seen a guy pee and lives in a house with all women. Grandma and I. Yet he will poop in his pants unless I remind him. And sometimes he even fights me on going to the bathroom. I would LOVE advice on what to do with this. I've even done reward systems like candy, stickers and toys. He even has a potty book. Nothing seems to work, but me hovering over him.
Jordy also wears size five clothes even though he is seven. He is at the mental level of a three to four year old on his testing and work. My son eats GREAT yet for some reason just doesn't grow so well either. He is in different classes and programs that are helping him to progress further. This year he now knows how to write his name! He didn't even realize Jordan was his name last year. I'm so proud of the steps he has made and am looking forward to seeing what he will be doing next.
My son is incredibly loving. He says he loves me every day ten times or more. He loves to give me hugs and kisses. Jordan is good with animals and even has his own puppy, Buddy. He named him himself. My son is also VERY sensitive and generous. He shares almost anything. I honestly couldn't have asked for a more wonderful treasure. I want the best for him, like parents do, and am glad so much help is out here for him. He has made great progress because of it.
I ramble...but I hope I gave you some ideas of my boy and the things we are working on. I'd be glad to hear from others who have tips or a similar journey. And best of luck to you all!

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