What happened? - Autism Spectrum Message Board

tikkileo · 08-11-2009, 11:48 AM

Im looking everywhere for answer's to what went wrong.
My son was born 7 weeks early so we were told to expect problems due to other problems .He did have a 25% delay in fine and gross motor skills and excessive muscle tone..but with extensive PT he met all his milestones a month behind.When he did walk finally he ran we were so happy But it was on his toes they had shoe insteps made to help and it it did so another hurdle made over.Then his Pt noticed a few things about him that didn't seem right recommended a diagnoses done we did came back he had SPD so now he was signed up for ot..Again everything progressed and he seemed to be coping just bath time was a fight.foods we were careful with on the taste and texture and load noisy places we took slowly and left if to much for him and when he turned 3 we took him to be reassessed for continuing services we were told he was not educational unpaired and was doing great no need for further services we were so happy that he had progressed so well thanked them for there help and left.Our nightmare was just starting for a year we noticed a few behavior problems but put it down to being a independent toddler .He potty trained easily and very quickly ,We noticed he was not mixing well with other children his age going more for older children or much younger but again we put that to his little quirks his food choices got fewer and bath time became a 2 man job.(sound of a murder being committed) only wearing certain clothes with no labels .We asked his ped was told it was all due to his sensory issues and to learn coping ways.So again off we went with the knowledge we were doing thing right for 6 months. Then it happened our quirky 4 1/2 yr old became a troublesome terror ,tantrums for no reason that lasted for hours with no end ,he was unable to play with children his own age without tears ,anger and screaming ,they started to tease and joke around him that would set him into overload and he stopped mixing with them only playing on the outer ring and if they tried to join he got upset .but adults he would talk endlessly to about everything without taking a breath .in fact when they tried to stop his endless monologue he would be confused and cry.were he use to share now he guards certain items like a pitbull and the remote control from his tv has become his new teddy bear if we touch it or use it he becomes inconsolable and shouts for ages its his.its his and will continue mentioning it for hours after.Bugs send him into fits of real fear ants,flys etc and we are a avid camping family have been all his life bugs never bothered him before.Some day's all he does is say hes hungry constantly so we feed him ,(limited choices) some days repeatedly saying hes thirsty and drinks constantly and other days 1 cookie and he repeatedly says hes full .Family members have started to make comments hes a spoiled child ,naughty and doesn't know how to behave and yell at him,he then retreats into himself and hides or just gets a lot worse.A family friend that works with special need children suggested going back to see my DR so we did he suggested seeing a develop mentalist so we contacted one only to find out there is a 16 month waiting list for an appointment so we filled the forms and waited and waited.With turning 5 this year we had him enrolled in Kindergarten he passed the test great so we thought maybe all the problems were us causing them he is the youngest of 6 children .they did tell us he would be reiciving speech therapy and ot at school to help with the delays he was showing but other wise all looked good.So again i put on my rose colored glasses and fooled myself everything was ok.2 months before his 5th birthday we went on our family camping trip...it was a nightmare .the bugs caused panic attakes nightly,the pool he wouldnt go near ,anybody laughed to loud he thought it was at him and would have a tantrum lasting hours,the only way we could keep him calm is by swinging him in a hammock the list was endless.
Another camper there with a Autistic son came over and asked what therapy we were using and did we think it was any good.I looked at her in surprise and told her my son didn't have autism ,he was just being his quirky self..She just smiled at me and nodded and said i needed to get him checked.
So now im thinking is this a possibility ,has my delay made him worse ,how was this missed by all the test he had as a toddler. What do i do next? still on the waiting list for develop mentalist wont get an appointment for a year,I am now in panic mode he starts school in September do i let him start still do i pull him out (a very hard school to get in) Another person mentioned Aspergers to me..Now i have all these thoughts going on..Does it seem possible? i read up on it ..He makes eye contact and is very intelligent so is it possible? He just has quirks! I finally got an appointment with a neurologist out of the city for Sept 17th by phoning around.But do i let him start school?
Does it sound like Autism to to you. What did i do wrong how did this happen? please any advise would be welcome and whats the best way to prepare for this appointment so i can get him the help needed.
Vicky

roses4lace · 08-11-2009, 06:08 PM

You probably didn't do anything wrong. Asperger's manifests differently in each person, though there are many similar traits amongst us. It sometimes takes years to get it properly diagnosed. It would be good to at least have him evaluated by an expert in Asperger's/Autism. No preparation necessary, just make the appointment and take him. If it's Aspergers/ Autism, then the proper interventions/ assistance/ training can be started now. Most of what you're describing sounds like sensory overload, a child who doesn't know how to handle the overload, whether it's verbal comments he isn't expecting, too many people or too much activity/movement, unusual things that startle/scare him, and attempts to "control" his environment to whatever extent he can. All of this pointing to a child who is being bombarded by "the world/ daily living" without the skills to cope. Various therapies can help with this, regardless of the "diagnosis".

Mira11 · 08-12-2009, 12:04 AM

you didn't do anything wrong; you actually sound like a fantastic parent. i don't think he has autism. it sounds like he has a very oversensitive nervous system, possibly from being a premie, or possible because that's the way he is.

i would suggest a consultation with a child psychiatrist as i think you might get to the heart of matter quicker. see if your drs. office can give you a referral and tell them it's urgent that he been seen before school starts. and i would print out the post you wrote out for this forum and take it to the drs. office for them to read. i think it's perfect comprehensive explanation of all that your son is about.

even if you go to the neuro, i would take what you wrote for this forum. i have had better luck with child psychiatrists getting to the heart of matter and knowing if medication is a good treatment.

good luck. keep us posted.

mscat40 · 08-16-2009, 08:40 PM

I know for certain that you have done nothing wrong as a parent. The waiting time and wanting to find out answers is the most difficult of all.
What you have described here, is that your son may have sensory problems going on that makes it difficult for him in daily life to cope. Noises or sounds bother him , and touch , tactile , he is extra sensitive to . my own son is the same way with sound and noise. he can't stand loud noises. Cognitively though , despite being born premature , your little boy is right on target. that is very good.
A developmental Ped. is a good professional to turn to as well as the school district for a full evaluation, but if he is doing well in school and is comprehending well then this is very good too. I am not too sure what services is offered to children with Asperger's Syndrome during the school aged years. If this is what is causing your son's disabling condition. If so, he is on the high end of the spectrum.

tikkileo · 08-19-2009, 09:57 AM

Thank you for all the support..My husband is the sort of lets not worry till we know type,me i worry about every thing.the good news though is that with our ins i don't need referrals so im looking for a develop mentalist who is in my network with a shorter waiting list.I keep hearing Asbergers and that it might be a possibility he does show a lot of the same traits except the eye contact which he will hold for a few moment unless hes having a crises or trying to concentrate then he will look past you .His pain tolerance his very high in fact when he falls we have to check for injuries but this is also a symptom of his Sensory perception disorder how can they tell the difference between SPD and Asbergers as they seem very similar in nature .I suppose I'll just have to wait until Sept 17th to know ..the waiting is the hardest thing in the world