3 year old who is developmentaly disabled

Mariella - posted on 03/01/2013

Hi hanna ,
My son is now almost 4 1/2 yrs old, goes to mainstream nursery,I've fought for him to get the SEN statement which means he's been awarded 16 hrs per week help in school. having said that my son has made an enormous improvement in his language and communication with the people he feels comfortable with (fam.members ). He can now make 5-6 words sentence and most of the times he will answer or at least acknowledge me when i talk to him
In Nov. he had s&l assessment and he seems to be at the level of a 3 yrs old.
This improvement i believe its the combination of many factors, very very little time spent in front of the tv, lots of reading and looking at pictures on books together, singing and acting song together, daily physical activity, talking about what's happening and try to expand his vocabulary.
he's now uses verbs and even adjectives, still says words on the wrong order when he attempt a new sentence.
Still does not ask "why" and even"when questions, lots of what, where. still needs one step instruction for him to do things with lots of prompting, for example rather then say lets get ready to go out , i need to say, coat on ,then shoes on, then hat on now etc.....
But im trying to let him do the getting dressed and washed by himself while standing next to him, and he had improved lots compared to a year ago
One thing im trying to help him with is socializing meaningfully with other children, he can't hv a proper 2 way conversation but he mostly make statements like"look my new gloves" then the other child will say something like"I've got the same just different colour" and my son would not comment on that so the other boy moves away to play with someone else.
Its hurting me because i know he liked other children company but they don't understand his way, he might talk at the right on their face rather than keeping distance and waiting for them to talk.
He has some sensory issues and likes to touch children faces, hair, ears, some kids get annoyed by that but he can't help it.
He s taking swimming course, meeting up with friends with kids every week, i'm looking for a musical group for him to develop social skills while doing something he likes. apparently scouts are very good activity for children but starts from 6 yrs old so ill keep it in mind for children the next few years.
Overall he's improved alto its just much slower than other kids, showing language delay and some odd behaviour at times, teacher hv told me about his improvement too.
He knows his colour, can count well but gets confused in recognising numbers, he knows letter m and k. lots and lots of work ahead of us....
And by the way not diagnosis yet . as long as his needs are address at school and home and he's happy and fulfilling his potential i'm happy too!!!

Hannah - posted on 03/01/2013

Hi Mariella,

My son sounds very similar to yours. Please could you update how you have got on with your son? Many thanks

Helen - posted on 08/18/2012

Hi Mariella, I'm in a similar position to you. My Sam (4 next month) was doing all right until he started to speak. We had a three or four words by about 15 months but then he slowed right down and still had only about twenty words by the time he was two. These words did NOT include: yes, no, bye, hello, daddy, nan. He is still way behind for his age. It is only this year that he has started using yes and no (though not frequently) and, in recent weeks, 'hello' He does have quite a wide vocabulary now but it's mostly nouns. Sam seems to understand only about 20% of what we say, he never responds to 'why' questions and can't seem to manage to follow more than one instruction at a time. He sometimes gets his words the wrong way round, though this appears to right itself eventually (until recently he said 'I can to need' instead of 'I need' for ages). But there is no conversation with Sam, he makes statements and we respond or we ask questions or make basic statements and sometimes he responds. Often I talk to him and he completely ignores me (his hearing is fine, we've had it tested) and I don't know if he doesn't understand what I have said or is ignoring me. He is a great copycat though. For example, he said 'I'm starving' a few days ago but clearly had not the faintest clue what it meant but had heard me say it. As he is entirely disinterested in food (I have to spoonfeed him half the time), I got my hopes up until I realised what had happened!

He has no concept of today and tomorrow. We're meeting his best friend for a play date tomorrow and I've been trying to get him excited by saying 'We're going to the park with James on Sunday, isn't that great?' but he just looks at me as though he hasn't a clue what I'm talking about. He often parrots phrases he's heard from other people or television. For the past several weeks he has asked hundreds of times a day 'What colour are [whoever]'s eyes?' and 'How do you spell [a word]?' but although he insists on an answer he doesn't appear very interested in it and often asks the same question again immediately afterwards. These are just examples.

I'm concerned that if his understanding of speech doesn't improve dramatically over the next school year, he will be kept back in preschool. Thank goodness he wasn't three weeks premature else he'd be going up to school this year or, more likely, would not.

Can anyone give me some clues as to what's going on because, although I've been pestering the medics since he was 18 months, no one has suggested a thing and no one has actually DONE anything to help us. Thanks.....

Mariella - posted on 07/06/2012

Hi Caroline

I'm so pleased your daughter's life ha improved so much!!! I was wondering about this supplement your daugher is taking and the components. I would like to know more about the product but I'm scared to give my 4 yrs old son any chemical or medicine.
At what age has your daughter started to take it and have you shared your founding with her doctors and what is their opinion about it?
So sorry to ask you all this questions but like you I'm in the search of anything that could help my son improve his brain funcion, reasoning skills and communication.
Mariella

Caroline - posted on 07/06/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness, muscle spasms etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway. Now she is taller than me.
http://www.navig8.biz/LifeStyle2

Stephanie - posted on 04/02/2012

We live in idaho, usa. I have exactly the same problems with my son. It is so frustrating for him because he cant get the words out, and he has the hardest time letting us know his needs.

Mariella - posted on 03/31/2012

Hi, Where do you live? I found a private children centre in London where I'm intended to take my son for an assessment to get e second opinion. I just want to have a diagnosis so I can help him in the right way. Get him to understand he can't have whatever he want whenever he want it - leading to terrible tantrums and often aggressive outbursts. He's such lovely and cuddley boy, the more I read from other mums about their children the more I see signs of autism in my little boy....

Mariella - posted on 03/31/2012

Hi, Where do you live? I found a private children centre in London, where I'm intended to get my son to get assessed so I can get e second opinion; I feel i'm waisting time that I could invest in helping and support him develope. My son speech is very delayed for his age, although his trying harder now, he's still making 2-3 words sentence, but what is really frustrating is his inability to comprehend that he can't have whatever he wants whenever he want it - leading to terrible tantrums and often aggressive outbursts. Some daily simple tasks like getting dressed or wash up become a strugle, if he doesn't want to do something, there is no way I can make him reason and understand, he will totally shut and stop listening to me, avoiding eye contact and phisically run away from me. The more I read about other mums experiences and their children the more I see my son's behaviour and I start to believe he might have autism.......

Stephanie - posted on 03/29/2012

My sons last evaluation was last year, and they said he had the mind set of a one year old. Its very hard when you dont know what is going on. I have been researching online, and I found this thing called speech apraxia, and it sounds like what my son has with his speech delays. He was evaluated for autism, and they said that he was not autistic. He is going to get another evaluation this year. Thank you so much for your response, its nice to know that other mothers are going through the same thing. Its so much harder when you dont know what's wrong.

Mariella - posted on 03/29/2012

Hi Stephanie, I'm in a very similar position with my son, he's 3 1/2 from the first assessment he shows a development between 2 and 2 1/2 years old, therefore an overall delays. 2-3 words speech mainly to express his needs, cognitive delays, it seems everything needs to be tought to him through alot of repetition rathern then coming naturally as a part of his growing....

I think only with time I will know exactly the real issue of his delay as sign of autism either will wear off or appear move evident over the next year or so. I wish I could be of more help but I'm too waiting for a more specific diagnoses. I've been taking child/parent interaction group, 5 session which has given me helpfull hints and strategies of how to support my son developing his speech. Secret is to talk talk talk all the time about what is happening using simple and short sentences, every moment spent with my son becomes an opportunity to enrich his vocabulary interest in new things.

It's hard work but it helps, speech has improved abit but he still has great problem with listening and following instructon, strong reasonong skills delayes.

I bought over the internet "sooki and finn" 3 DVDs, designed for children with speech delay and my son loves it!!!!! He has learnet a great deal altough at times it seems he just repeat words or even sentences out of constest...

I would like too to hear from any other parents who has lived or is living a similar situation...