MDJunction - People Helping People
 
Ask a Question
10/26/2008 12:26 AM

Frustrating

mumto5
Posts: 5
New Member

I get so frustrated about my son all i want to do is help and understand his needs and problems but i am finding it so hard when i havent got a full clue what what is excatly wrong with him.

His medical notes currently say..

Maturity delay of the brain--this was found by a mri scan,

small stature and size- his growth hormones arnt working properly so he due hormone treatmenbt soon,

Behavioural,language speecjh social skills problems- he attends a special needs school where he is in a class of 7 children he does not interact with any of the children but will play alongside them.. he wont join in group time but responds real well when on one to one basis.

Paraesis of the vocal chords- his vocal chords have a hole in them due to the abnormailty of his brain making his speech very unclea.

Obessional behaviour-- he is terrible for lining things up at home we go into his bedroom and constantly find all the toys and video tapes in lines he also lines his food up on his plate-- he doesnt really do this at school tho.

Huge tantrums which are very violent and he has caused damage to the home during tantrum we just leave him to go thro tantrum now and ignore him till he has stopped again he doesnt do this at school.

He walks with a gait and intoes -- he is very clumsy and his joints dislocate very easy--diagnosed dyspraxic for this problem.

He hates change and will only go out if he knows exactly where he is going--ie come on lewis lets go asda even tho he cant read if i take him into any other shop than asda he comepltely loses it in the shop/place and has bi tantrum.. kicking,screaming rolling about on the floor.

His devolpmental age has been assessed as 2 years 6mths he is very immature for his age but excels in maths and drawing!!

Our health authority have done so much for Lewis already he has got a statement which also includes personal care as lewis still isnt fully toilet trained.. and im cyrrently waiting for 7th november to see the CAMHS team i am so hoping they can give me d/x of what it is with Lewis im real sure he has some type of autism but what type i need to know so i can understand and help him more!! I as right about my eldest having ADHD and im sure i am right about Lewis!!

Did you have feeling about your child/children? What age did you fin out is years 5 mths to young to get answers!! Thanks in advance sorry for rambling.xx

Post edited by: mumto5, at: 10/26/2008 00:27

Reply

10/26/2008 12:29 AM
mumto5
Posts: 5
New Member

Oh forgot to add when at home lewis interacts well with his siblings but all play is solely on his terms and his terms only if the others wont play as he demands he loses his temper has tantrum hits them and refuses to join in.. he wont play outside unless me or lee are sat on doorstep with him when we take him play area he stays as close to us as he possibly can.

10/26/2008 12:38 AM
spectrummum

I would push for a differant diagnosis hun

I knew at 5 weeks with my severe autistic child but it was after his diagnosis that e others were diagnosed

.All the traits your child has been diagnosed with are classic autism not global delay.

ask your pead if you would be able to sit the ADOS it is a 99% accurate ating scale and assessment.

Picture exchange cards work very well..

shell


10/26/2008 03:08 AM
maMONa
maMONaPosts: 1168
Senior Member

Spectrummum,

hello. I was wondering...in your personal OPINION....what severity does my child have (Alex)? I wrote earlier on what traits he has...but i am still wondering to what extent or severity he has autism. I know you are not a dr...but you have so more experience i just thought i would ask.

Alex has been changin weekly. He is 1 year and 8 mths. old. He now exhibits:

-flapping arms when excited

-nonverbal, but squeals when excited

-hums or tries to babble at times

-tiptoes alot

-very clumsy

-spins around in circles often

-looks at people through corner of his eyes

-plays on his own

-needs to be in his room most times with DVD's

-hates restaurants or other loud socialplaces with lots of people

-paces back and forth aimlessly

-started lining things up near his TV (dvd cases, toys, stick dolls, etc.)

-has odd sleeping pattrens

-has trouble eating solid foods..prefers starchy foods

-thrives on milk

-needs to be alone a lot

-was very "stiff" as an infant

-no cooing as an infant

-is getting early childhood intervention services for "atypical behavior"

-neurologist says he has PDD but wont say anymore till he's 3 yrs old

I would gretaly appreciate your thoughts. It seems as Alex is growing more traits are coming out.


10/26/2008 03:28 AM
spectrummum

I would say classic autistic

Which is low functioning but that does not mean he is retarded no no nojust because he cannot express what is in his mind does not mean he is slow.

If a child has no speech before age 1(single words by one short sentances (I want drink) by age two and they have the traits from the triad of impairments then a diagnosis of "kanners,classic" autism

If a child has some speech but has problems in articulateing and prounouncing and they have the traits from the triad of impairments then it is high functioning autism.

If a child has normal speech and they have the traits from the triad of impairments then it is Aspergers syndrome


10/26/2008 03:46 AM
maMONa
maMONaPosts: 1168
Senior Member

Thank you spectrummum. That was what i was thinking but thought it was just me.

Since im trying to write in my diary here on MDJUnction but it seems to have a glitch at the moment....I'l write my feelings here for this entry:

Alex's "disorder" hits hard.

Alex is my pride and joy. he is just gorgeous. we dotn go out much which is fine because alex likes it that way. work is tiring and there's always things to get done here at home. Well today we went to a family and friedn gathering. Friends we had not seen in a while were there. Babies and all. It was there that Alex's autism comes to life. I just accept him and see him as perfect in my eyes. Everything he does just amazes me. today it made me realize that he is starting to stand out as hes growing. He cried for about an hour until he was comforatble enough to relax (we have been to this house many times). He then ignored the other children his age and would go pacing...pick up small objects from the floor and taste them....hide under a sheer curtain for quite along time and he seemed to like it that way....and flicked his fingers about his face a lot. People would ask why he would do those things...and i had a hard time answering. it was then that i started getting upset at evrything. i felt sad and wanted my son to join others and have fun. the stigma was kicking in. relatives would stare and i just wondered what they were thinking. i felt like saying..."he is perfect...let him be."i heard some saying he would "grow out of this"...that we as parents dont "take him out enough" and that was why he was like that. it just p***** me off.

Post edited by: spectrummum, at: 10/26/2008 03:51


10/26/2008 03:52 AM
spectrummum

never underestimate a mothers instinct hun

shell


10/26/2008 06:26 AM
kari
kari  
Posts: 295
Member

well I go through the same thing: the comments, stares, and what I should be doing or should not be doing etc.. (like I am doing everything wrong) The tantrums have gotten better once I made some changes in our lives but now, some have returned once she entered the school system, and she hates it. She is going to be six. So unfortunately once you get through one thing, another will appear but for the responses you get from family and the public and even professionals will always be very frustrating, I know, I have been going through it since day one.

11/02/2008 11:16 AM
heartfeltcompassion
Posts: 11
New Member

I feel your pain!!! I won't offer much advice.....sometimes advice makes it worse. I just want you to know there's someone out there that is on your side....lives with the daily issues as you do!! My husband & I now plan ahead before we get in the public eye(wherever it may be) that if things get out of hand(odd behavior,yelling tantrumming..etc) we leave right away, before we get emotionally invested in the situation. Even at major family events. Nobody will understand your child unless they walk in your shoes(not even Dr.s or specialists...unfortunately! Sad

Take care & God Bless!

cz


11/05/2008 05:38 AM
mumto5
Posts: 5
New Member

My family are the worse with hurtful comments about Lewis i get he is just to spoilt,i make it up about him, im not strict enough with him, i let him get his own way to much and the best one came from one of my so called best mates the other day..* u should have taught him to share properly when he was younger and then he be able to share now* i was so gobsmacked i didnt reply but afterwards i as fuming it isnt mine or lewis's fault he doesnt fully understand the concept f sharing grrrrr!!!

2 More days to go i cnt sleep cos of this appointment it has been a long time coming and i have written loads and loads down to take with me!!

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved