Recognising childhood disorders

[Donna]

Hi,

I have some concerns regarding my 13 (almost) yr old son.
As a baby he was extremely difficult, he hated touch, cried constantly but would not be soothed. He had reflux vomiting and until he was weaned from baby milk he would just bring it up immediately ..it would literally shoot across the room like something from the excorsist! He was prescribed special baby milk, ranitadine and a thickener to mix in with his milk which helped but very little he also had constant diahrroah.
He was a fairly late developer although not very late.
From being very young he could not tolerate any change in routine and also had a few little rituals although these did eventually stop over time..he took everything literally and i mean literally! you couldnt play things such as ''ive got your nose'' he was convinced you did and would scream to have it put it back on, if you said to him Dylan can you close the door? he would answer yes and walk away but if you said to him Dylan close the door then he would.

He was not sociable, wasnt comfortable around people even those he knew, avoided eye contact, couldnt concentrate on anything and was unable to play imaginative games, only action games jumping around etc he had no sense of danger and just went along blithely, he wasnt an ignorant child but if he was occupied with something it's like he was somewhere else completely (still does that) and just didnt hear or acknowledge anything or anyone else.

I pestered and pestered the Drs before they finally agreed after a couple of yrs ..they grew sick of me i think lol (he was then 5 yrs old) to refer him to a peadiatrican, she told me he had a language disorder and needed speech therapy, he saw a speech therapist who set him a few tests 3 times and i was told he would be given speech therapy and a special needs teacher at school.
He started school but the teachers refused special needs on the grounds they didnt have funding, i went back to the specialist who said she couldnt 'white paper' him because it wasnt debilitating enough and basically there was no more finance available.
she did agree to send him work for both at home and at school, but i discovered that the plan he was sent was being used for all the children..i felt that was not helping Dylan and was basically just wrong it was HIS plan designed for and to help him, not the whole bloody class to play games with it (they turned it into a kind of class game/activity) i argued and argued with the school but to no avail.

eventually i managed to see someone else (by then he was 8) this specialist was done through the school and was the only one we could see..he then said Dylan didnt need any help just that he was 'different' to the other boys at school.. that bit he actually said to Dylan! but not to worry!
He also said Dylan didnt have a language disorder but dsypraxia- Dylan has always been a bit clumsy as well.And that he would be permanantly discharged from peadeatric care.

But he has never been the same as other children, he is intelligent but he struggles with anything that isnt practical, so while he is good at science and maths his english is poor, whenever ive raised my concerns to the teachers they just shrug it off say he's a hard worker and is better at some subjects than others, but i just KNOW this is not the case.

He still doesnt socialise, doesnt play outdoors just spends all his time on the x-box..unfortunately he lives with his dad and his dad doesnt limit this or try to engage him in other things, whenever ive spoken with his dad he just says well the guy from school he saw said he's different and just a bit clumsy, so i cant get anywhere with him.

Ive noticed recently Dylan is becoming more and more hyper..he cant stay still,the only time he can is in front of the bloody x-box or other video games or when he is asleep.
He used to have a good appetite but now barely eats anything but he has no physical ailments he is perfectly healthy. he lives totally in his own world when doing something and you can talk talk talk or do anything to get his attention and he either doesnt hear or acknowledge you and when he does he isnt actually taking it in.

Out of my 4 children he is definately the most well behaved, sweetest, gentlest (except for the clumsiness) politest and thoughtful of them all.
He's not a badly behaved child in the least although he can get frustrated and snarl for no apparant reason then stops immediately as though he's not done anything wrong and if you point out t was wrong to snarl he's genuinely bewildered because he doesnt realise he has...if he gets really frustrated he can cry a lot and for a long time, i know all children cry but the way he does and how he acts with it is not like other boys of his age do, he is very immature.

i am worried about him, but his father and school dont feel there's anything wrong and he is registered at his fathers gps and i cant make an appt and get him seen.

i have absolutely no knowledge of adhd or other childhood problems, ive researched it but he seems to fit yet not fit some of the different childrens disorders..i honestly dont think im seeing things that arnt there even though i am obviously seeing things no-one else is but i know there is something thats not quite right, there always has been.id really like your opinions on this and any similar experiences if its possible i would be extremely grateful.

thankyou, Donna.

gosh this post got really lengthy sorry!

[David O]

Good morning Donna,

Nothing hurts more than seeing our children struggle. My own Benjamen, now an adult, has struggled with anxiety and depression for >20 years, and it pains me to watch him struggle. He had Lyme disease as a child, severe asthma, and at one point he was thought to have spinal meningitis.

I was wondering if your son has had a full psychiatric or psychological evaluation? This would give you a more complete picture of the issues. Suggesting he needs speech therapy at one point, and then that he might have a learning disorder, then maybe dsypraxia, all suggest to me that everyone is looking only at their piece of the puzzle. This reminds of the story of the 6 blind men and he elephant!

A comprehensive evaluation (psychiatric/psychological) may give you a better picture. When I hear-- poor eye contact, speech problems, Dyspraxia (movement disorder), increased hyperactivity, "he's just different," limited interest in others, more interest in objects than people, ritual behaviors, trouble with changes in routine--- you're describing several of the symptoms on the Autism Spectrum Disorder (more along the Aspergers and Pervasive Developmental side) range or possibly something else that masquerades as this. But this is only an armchair analysis-- only a competent and fully trained professional can really give you a more complete picture.

Having this information is critical since from here you can begin addressing the issues with his father (if this is possible). To allow this to slip thru and not address it may result in problems for him as an adult-- having the necessary skills to live away from home, getting and keeping a job, making friends, buying a home, finding a love interest, being able to live independently w/o struggling daily, etc.

Few things are harder for parents than to watch their child struggle their entire adult life-- especially if they could have pursued every avenue possible. My suggestion is to demand repeatedly, until they tire of you, a comprehensive evaluation-- not by the school, but by an independent clinician. Following this evaluation, again insist, be a Pit Bull, that the school provide the necessary services.

Good luck and I hope this helps,
David

By the way, my daughter had projectile vomiting due to colic- our solution was goat's milk. Problem solved immediately!

[Donna]

Hi David.

Thankyou for replying, Dylan had a long evaluation from the paedatrician or she might have been a child psychologist even, i dont know i wasnt very up on anything like that then, and was just grateful that at last after 4 yrs someone was actually listening to me instead of sending me away as an over protective mother. She was the one who said he had a language disorder both with semantics and pragmatics, she also explained that it was at the very bottom of the autistic spectrum and that when he grew older it would go but he would just appear a bit eccentric and maybe a bit egotistical to those who dont know him and it wouldnt affect his life.
Then he had the 3 tests from the speech therapist and the so called lesson plan for school.
After the school psychologist (i think thats what he was, i was never told and didnt think to ask, which i should have done.) saw him and said he was just different and had dyspraxia that was it he was discharged, that was just before he went to his dads.
Ive tried over and over to get his dad to agree to arranging for us all to go see the gp to get the ball rolling but his dad just wont agree and without him i have no way of managing it. But im going to keep on at him, i thought about asking s/services to help but they have always been with their dad and only listen to him they pretend to take what i say seriously speak with his dad then come back to me with the reply, dad knows better because the children live with him and anything i say is hearsay so to involve them wouldnt help.
In fact it would hinder because it would make his dad more stubborn by citing the s/workers opinion.
I have no other way of doing anything but having to rely on his dad to agree with me,over here we cant go to an independant clinician we have to have refferals through the gps unless you're lucky enough to be able to pay privately and unfortunately im not in that position.

One thing i forgot to mention ..from being very little Dylan has had this weird habit im not really sure what it is, its sounds like a snorting and clearing the very back of his throat loudly and roughly both at the same time, i did take him to the gp when he still lived with me and the gp said it was a habit but his nasal and throat passage were closed up a bit because of it, he was given a throat spray which helped but when Dylan went to his dads his dad didnt bother keeping up with it, and it got worse again, i managed after about a year of nagging to convince his dad to go back to the gps, Dylan was given another spray but like a lot of children couldnt be bothered with it and after a couple of weeks his dad just forgot all about it, thats the way his dad is.

i dont know if it's possibly connected
with anything but id be interested to know.

I wish id known about the goats milk! nothing ever really helped with Dylan, nutramagin was the milk he was on..they tried some chicken thing but that made it worse.

[mscat]

Hi Donna,
I read through you entire post. I like to just discuss with you parent to parent , a few things that I saw what you wrote ok? First thing that I like to know is that I am a single parent of a child who is now 16 years old, he is a boy , and has austistic disdorder. I have raised him since he was born. My child had his first diagnoses of autism at the age of 3 1/5 .
I am not implying that this is what is happening whith your child. However, what you described has a lot of behaviors of a very similar condition called called Asperger's syndrome. Did your son talk early? Is he good at one area of interest ? or focus? real smart something that he really likes to do? Children with Asperger's are often clumsy , and awkward socially . They still can have social defecits too. And are sometimes hyperactive as well. IT is a com morbid disorder that can effect them as well. Especially a younger child .
Does your son cry when he has to stop an activity ? or change? time to quit something he likes to do? is it hard for him to stop doing something and then do something else? SOme kids on the austistic specrum will have temper tantrums , some children will be ultra sensitve and cry like this. They hate change.
Is he sensitive to noise ? or taste ? a picky eater ?
I am certainly not a DR or professional, however just a mom who has dealt with a child for many years , with autism. I agree with David O . Tke your child to a specialist. Not from the school. the school can't diagnose your child. He needs to be seen by a child neurologist , or get a referral from your childs ped. for him to see a child developmentalist. Or a neuropsycholgist.
In the United States our school has to provide services no matter what . Even when a child has a disability , the child is entilted to a free education and services. A Individulized Education PLan is made and set up by a team inclding the parents each year for the child , that we sit down and set goals for the child to achieve . For special Education services.
My son is in a special day class , and has been in these classess for years . They are small , and have small teacher ratios, plus teacher aids.
I would definately have your child evaluated by an outside source, and by a specialist , one who knows what they are doing.
mscat

[Donna]

Hi,
Thankyou for replying mscat,
In the UK our children get free education and for those who need it special needs teachers and plans, but funding is poor and somehow most children other than the children with the severest problems slp through the net on flimsy reasons. But even some of those children dont get all they should, in fact in my childrens previous primary school there was a boy who was severely disabled in absolutely every way possible, and should actually have been in a school that is specialised in that area..all his mum could get for him was a class helper who went through his plane with him and fed him and changed him, she was not qualified in any way no more than i am...funding in our area is terrible, im going off track sorry :o

Did your son talk early?
he was a late talker, he was late developing at most things, .

Is he good at one area of interest ? or focus? real smart something that he really likes to do?
he is better at things such as science,IT, maths and the more practical things. Slightly better than most children in those subjects though i wouldnt say he's really smart.
Does your son cry when he has to stop an activity ? or change? time to quit something he likes to do? is it hard for him to stop doing something and then do something else? SOme kids on the austistic specrum will have temper tantrums , some children will be ultra sensitve and cry like this. They hate change
Is he sensitive to noise ? or taste ? a picky eater ? .

He definately hates change and is now becoming aware of that himself, he commented upon it recently.
He doesnt really bother too much about stopping an activity although it takes some time to get him away from whatever he is doing.

He did use to have horrific tantrums i have never seen a child either before or since have tantrums like that, in fact it was so intense it used to scare me at times even as a baby. The last couple of years they have almost stopped but if he does have one they are out of proportion for a boy his age and the reasons he has them other than that he is probably the mildest tempered, easy going child ive ever known.When he does cry it's usually over something silly and immature for his age more like a 5 yr old than a 13 teen yr old.
He can be sensitive to some noses and he can get frustrated with them, i dont think he is sensitive to taste, he used to have a good appetite but now he barely eats anything although his health and weight are fine...though im worried they wont be if he continues as he is. But a lot of that i put down to both his school meals and his dads, at school he lives on chps curry sauce and crisps and at his dads they live on crumpets pizza and noodles, so when i put cooked 'proper' meals in front of him he doesnt want them, to use his own words he's ''not used to them anymore''.

i also worry because other than one friend who's slightly older than him and goes to a different school he's a loner he's not sociable with other children in his age group and he doesnt want or try to join in and make friends.
he doesnt say much (wont say much) and gets upset if you try talk with him but i think the other children at school now notice he is different and are starting to treat him that way..again his teachers havnt noticed everything and just say everythings fine he's a lovely boy..he also won a wii at the end of last school term for being the best behaved most helpful pleasant child in his year which hasnt helped him become much popular.

I am still keeping on trying to talk his dad round and when i do finally get to see someone i am really going to push to get him some help, he has to have it, i really dont want him to suffer and as he's getting older i think he will more and more so.

[mscat]

Donna,
The sooner the better. An evaluation from an outside source . By a child professional. One that deals specifically with children and developmentaly disorders is what I would highly suggest taking him to. Susch as a developmental Ped. Or neuropsycholgist .
One that can make a confirmed diagnoses in a child in your country if thir is something to confirm.
That way your child can recieve the services he needs as quickly as possible, which is very important . Early intervention in crucial , because the brain is still developing , which means a lot of these behaviors can be changed when the child is young , if intervention is applied beforehand , and caught early . That is the theroy behind early intervention. Lot's of times in the US we try and intervene at even younger ages , if it is more severe or aparent enough to catch it early.
then the young child can be eleigble for services even before the age of 3 yrs old . When the child is 3 he or she goes into the preschool program for special education services .... If eligible. My child has had all these services for a long time .
Time goes by so fast .Looking back , I can't believe I already have a son who is 16 . He has changed in some ways, yet , in other ways he is still the same. Autistic disorder is a lifetime disability , but he is doing ok. Sometimes i is very difficult , but I would not change it for the world.
Best wishes to you.
mscat