Hi another Newbie here and feeling a bit lost!

[Lucie1979]

Hi Im Lucie!

 

My son Xavier has just turned 5yrs old. He's in Reception at school. I also have a daughter Izabel who is 8.

 

God i dont know where to start lol!

 

Basically Xavier has always been a real character! About 6 months ago, my mum, followed by my sister then my sister in law, all gingerly mentioned that maybe something wasn't 100% with Xavier. Initially my reaction was, ok he is a little different but "nothing wrong with my son!!"

 

As he started into reception at school, last September, he LOVED it, still does but after a couple of weeks I get called into see his teacher at home time! She said she had a few concerns but wasnt going to make a big deal about it yet as he hadnt been there long and it could just be that he is still settling in. Fair enough, but I go off thinking about what my family members had mentioned previously.

 

With my 8 yr daughter, she would have her little naughty spells and paddys but ONLY if no-one else was around, when i used to tell people about her outbursts, they were literally gobsmacked!! With Xavier....well he cannot control where he has a paddy/meltdown/tantrum (whatever you want to call it) and cannot control who he does it infront of. So when he teacher calls me into class again at hometime and say that Xavier has been finding any form of transition in class difficult and has been on the floor in a heap screaming his head off....I was quite embarrassed but not 100% suprised and at this point getting more concerned about these comments. He isnt a naughty child by nature, yes they all push their luck etc but I cant explain it, its different with Xavier, being his Mum I can tell that alot of the time he just cannot help his behaviour. Teacher said to me that he loves being at school and his vocabulary is incredible, and when you talk to him you could be talking to an adult! Also that he loves learning and is like a little sponge. She also said that on the social/following instructions/transition side of things, her concerns for him were growing.

 

So she said she would get the schools Special Needs teacher to come into class, take a back seat and monitor him and see what she thinks of it all.

 

So this happened over the next few weeks and then after school one day his teacher urged me to make an appt with the SN teacher. Which I did.

 

When we arrived, Mrs Green (SN) greeted us, a very lovely lady! She asked us what our concerns were first, which we told her. Then she dropped the bombshell....."Im not a professional as in Im not a doctor but Im quite sure your son has Aspergers Syndrome!" Now to me, I kinda had a little idea about what autism meant but having never had any experience of it or been around anyone who has it I felt like I had been hit by a bus! She said she was going to talk to the school nurse and get a form sent to me to fill out to get him referred to the hospital. She also now takes him out of class twice a week for half an hour for social skills classes. He does love being at school but it seems certain situations at school and at home or just generally out and about in public, he cannot handle. He is next year in Year 1 at school going to be put on the Gifted and Talented Scheme for his reading. He is on Year 2 reading books! Listening to him read is absolutely incredible. He is a very clever little boy. Im very proud of him, Im proud of both of my kids.

 

Now... Ive got this form to fill in and since that meeting with Mrs Green have been reading books, trawling the net etc trying to read up and learn about Autism and Aspergers. I want to fill this form in properly. I dont want to be fobbed off but putting all his little ways and querks into words is really quite difficult.

 

Ive made a few bullet points but these are literally just a few.

 

1. will not eat any form of meat unless it is sausages mince or burgers, otherwise he actually gags, even on the tiniest piece. Used to eat anything and everything up until about 2 years ago.

 

2. is reading fluently, normal print books 2 years ahead.

 

3. Very clever yet cannot follow REALLY simple instructions, i.e Go and get some clean underwear from your draw upstairs, he will go upstairs and come back down 4 or 5 times empty handed looking very confused.

 

4. Is VERY easily distracted

 

5. Talks very loudly even in a quiet environment and even if I am right beside him.

 

6. Needs to be given plenty of warning for most things or he just cannot seem to cope with change of activity.

 

7. He has no concept of waiting his turn to speak in a conversation (he has plenty to say just always talks over people or butts in before the other person has finished speaking)

 

8. If he iswatching a loved TV programme or reading a book about a favourite subject its very hard to break him out of his little world to speak to him or ask him something. Literally having to call his name 10-12 times.

 

9. He constantly asks "Mummy why does everybody look at me?" It seems to bother him alot. (even if no-one is actually looking at him)

 

10. If there is loud noises or raised voices be it indoors, in the supermarket, in the park, etc he will freeze on the spot almost shaking and has his hands over his ears. (he doesnt get upset but his eyes widen and he clearly doesnt like it)

 

11. His vocabulary is incredible for an alomst 5 year old.

 

12. he stares up at the sky and spins around and around and around until i have to actually shout at him to stop b4 he falls over and hurts himself. Dont know why he does this.

 

13. Is obsessed/fascinated with playing with water, everytime he uses the toilet at home, when washing his hands will play for 20 mins if not supervised everytime.

 

14. Is obsessed with clocks....not what the time is but clocks. We walked past a furniture shop on the way back from town a few weeks ago. He stopped dead and was just staring into this shop and called him saying "come on Xavier..." He was just stood there in awe! I went back to see what he was looking at and there was the biggest clock on the wall Ive ever seen! He said "I need that clock for my room!!" Then I tried to explain to him that the clock wasnt for sale and was a part of the shop, he went into meltdown mode, literally in a heap on the floor...absolutely devestated!

 

15. He has issues with his balance

 

16. Doesnt have alot of co-ordination and is VERY clumsy.

 

17. Cant seem to run properly, all the other kids fly around the playground and he really cannot keep up. He cant walk fast either, I live 5 mins away from school and it takes us 15-20 minutes sometimes to get to and from school.

 

Some of this things probably arent relevant at all but I feel so lost. After the research Ive done and books Ive read, I feel quite sure that he does have Aspergers, if not then Im sure he must be somewhere on the Autistic spectrum. Obviously Im not a doc either though. Will have to wait and see what the referral brings.

 

OMG what an essay of a 1st post. So sorry!

 

Just curious, as obviously those of you on this site have experience 1st hand in one way or another be it yourselves or your children, do you think that we are taking things on the right direction for Xavier. He really is such a loveable boy and certainly one of a kind!

[Lucie1979]

Just wanted to add that he has been put on an IEP too and weve just had a report back from the Speech and LAnguage team to say they dont feel he has any problems in that area.

[Tally]

Hi Lucie, and welcome to the forum.

 

I am an adult with Asperger's. Most of the members here are parents with autistic/Asperger children. They will give you some very good advice

 

There are many things that do point to Asperger's. Certainly it is clear that Xavier has difficulties. It does sound like a good idea to go ahead with the assessments and try to get a clear diagnosis.

 

It sounds like you are very lucky with the support you are getting from the school. Take everything you can get!

[Robert-Humphreys]

Hi lucie, my son in what you listed was exactly the same, he was diagnosed with ADHD first at the age of 4 (reception class) then he got a year later a diagnosies of ASD/aspergers syndrom then in between a diagnoses of dispraxier, as with asperges and adhd and asd and a few of the others in that area you can have a mix of everything but get one diagnoses sometime a couple as they all meet each other in the middle and spread ( if you understand that). i myself suffer with adhd. Some of the point you but seem to point to asd/dispraxer, dispraxer is (back in the day) clumsy child syndrom.pushing to get the diagnoses is the best way to go as it will help your son in the long run espeacaly when he start to go into junior school and then secondary ed.

[Lucie1979]

Thanks so much for the replies! Im so new to all of this and Im so pleased that Ive found this forum!

 

I feel very grateful for the support and help Im getting from the school, it seems from reading some of the threads on here that not everyone is getting the support they need from schools.

 

Looking forward to getting to know you.

 

Going to sit down and write out this referral form today. Do you think I should include all of the points above?

 

Lucie xx

[Robert-Humphreys]

I would Lucie as it will help them and your son in the long run, list everything even if you think its not connected

[Tally]

Yes, definitely tell them EVERYTHING! Whilst some things may not be connected with ASD, they may also point to other conditions, so they need to know everything to understand what is going on.

[smiley1590]

i totally agree with robert's post that the list of signs does point towards the likelyhood/possibility of A.S and dyspraxia

 

(1)fussy / cautious eater ( A.S.D) could be down anxiety /sensory issues

(2) A.S.D

(3) finds difficult/struggles follows instructions ( A.S.D/Dyspraxia)

(4) A.S.D/dyspraxia

(5) find impossibile to regulate and equal balance to voice tone ( A.S.D)

(6)cope with change of activity (A.S.D/ Anxiety)

(9) common A.S.D /irrational anx paranoid thoughts

(10) A.S.D common sensory issue ( loud noises in shops) causes distress,anxiety common to block out those noises cause discomfort by covering ears shaking - physical sign of anxiety

(11) A.S.D

(12) common A.S.D behaviour to relax,chill,comfort ,enjoyment ( self stimulation) this can help calm anxiety situation

(13) alot of A.S.D children are obsessed with playing with water

(14) alot of A.S.D have obsessive objects ( your son's oviously clocks)!!!

(15/16) dyspraxia

 

 

XKLX

 

web links which may help provide more information : hope this helps!!!

 

http://www.autism.org.uk/living-with-autism/understanding-behaviour/obsessions-repetitive-behaviours-and-routines.aspx (point 12)

 

http://www.autism.org.uk/living-with-autism/understanding-behaviour/the-sensory-world-of-the-autism-spectrum.aspx ( sensory issues)

 

http://www.autism.org.uk/en-gb/about-autism/related-conditions/dyspraxia/dyspraxia-and-autism-spectrum-disorders.aspx ( dyspraxia signs)

 

http://www.autism.org.uk/about-autism/related-conditions/dyspraxia/dyspraxia-and-autism-spectrum-disorders.aspx

 

http://www.autism.org.uk/about-autism/related-conditions/dyspraxia/dyspraxia-and-autism-spectrum-disorders.aspx

[Lucie1979]

Thank you so much for the links!

 

You know as thick as I must make myself sound I never even thought there might be something else seperate wrong i.e Dyspraxia. I feel so stupid but this is all so new!

 

Lucie xx

[Kathryn]

Hi Lucie,

 

Obviously we aren't qualified to diagnose your son but what you've written is a good starting point for further exploration: keep noting things down which strike you.

 

It's great that the school is being proactive in offering support, as you say, it isn't the case with many schools.

 

Stay proud of your son and enjoy the positives - it's easy to focus on the difficulties and see a child as a collection of problems and potential labels when you're trying to put together a case for further investigation.

 

And welcome by the way!

 

K x

[Lucie1979]

Hi again,

 

have written out his referral form tonight and added a couple more things that again may or may not be relevant.

 

18. He didnt crawl until 10 months old and didnt walk until he was 15/16 months old.

 

19. He cannot catch a ball

 

20. Doesnt like water in his face and will not lean back in the bath to have his hair washed, he freaks out and gets very frightened.

 

21. He often opts to use his fingers to eat his dinner, rather than use the cutlery he's been given.

 

22. He always puts too much food in his mouth, which quite often results in him almost choking.

 

Going to hand this into school tomorrow and then await the School Nurse to call me.

[justine1]

Hi again,

 

have written out his referral form tonight and added a couple more things that again may or may not be relevant.

 

18. He didnt crawl until 10 months old and didnt walk until he was 15/16 months old.

 

19. He cannot catch a ball

 

20. Doesnt like water in his face and will not lean back in the bath to have his hair washed, he freaks out and gets very frightened.

 

21. He often opts to use his fingers to eat his dinner, rather than use the cutlery he's been given.

 

22. He always puts too much food in his mouth, which quite often results in him almost choking.

 

Going to hand this into school tomorrow and then await the School Nurse to call me.

 

Hi

 

Welcome to the group <'>

Most of the points in your first post sound very much like my son Sam age 7,he got his diagnosis (ASD,most likely aspergers)age 6 december 2009.

 

The points above are relevant to the diagnosis process though some of them,like the crawling and walking sound "okay" not to far behind his peers.

 

To get a diagnosis he would have to meet the ASD criteria,communication,social interaction and behaviour.Communication is not just about speech its about non-verbal communication,his understanding of verbal and non verbal.Also things like echolalia,does he repeat things alot from telly and family members,does he form his own speech.

I always thought Sam was really advanced he could read from age 2 1/2 and say very long words without effort.However he doesnt understand what he is reading he can just read the words,no meaning to it.And his speech I realised was 80% copied and only 20% was his own.

 

As Kathryn said we are not qualified or able to diagnosis your son,but wish you luck for the assessment.

[Lucie1979]

Hi Justine and thanks!

 

 

Xavier does almost ALL the time repeat quotes from the tele, adverts, films etc! He does this soooooo much! He has done this for a VERY long time! I remember aged about 2 while his sister was at school, I said Wow Xavier look at the mess in here! I think Mummy needs to tidy! He quoted the Homebase advert in response and said "Make a house a home!" LOLOL!!!

 

He does form his own speech too though, you can have a very grown up conversation with him, he understands most of what he reads and if he doesnt understand something he does ask. And asks and asks again! LOL

 

 

 

 

 

 

[Lucie1979]

Got some more to add too!

 

23. He finds dressing himself a huge problem!

 

 

 

24. Balance: Flights of Stairs; he puts one foot on one step then the other foot on the same step. Never alternate. Same coming downstairs.

 

 

 

25. Balance: if there is something on the floor he will hesitate to step over it, almost as if he isn't sure whether he will be able to reach across, then attempts it and is wobbly and unstable.

 

 

 

26. He is uncomfortable with any situation where both feet are not on the ground.

 

 

 

27. He does not like going on the swings at the park.

 

 

 

28. If you were to stand him on a dining chair for example, he would grab you for dear life, a real firm, almost pinching grip and would plead to get down, he does not feel safe.

 

 

 

29. He often falls over and still has not grasped the idea of putting your hands out to break your fall, resulting in many a fat lip and lots of blood!

 

 

 

30. When walking he does not look where he is going. For example: He will walk along, but will either be looking right or left but not forwards, and regularly trips up, falls over or walks into walls or bushes.

 

 

[Lucie1979]

Hi, me again!

 

Forms are all filled in and sent off, have had to chase the school nurse twice and she still hasnt got back to me!

 

Have split with my husband and at the moment am finding it a struggle all round!

 

I love my kids so much and they certainly keep me going! Dont know what I would do without them!

 

Just want this ball thats slowly rolling to HURRY UP so I know exacly what I'm dealing with!

 

Then i can also give a big 2 fingered salute to my Mother in Law who when I told her about everything that is going on and is going to happen with Xavier i.e concerns at school, meeting with SN teacher, referral form etc....she laughed at me down the phone and said "but how can he have something like that?? He is such a nice kid" Its not a ###### disease!!! GRRRR!!!

 

 

She, like her darling son (my husband) is completely in denial that there is even a possibility that something might be wrong with Xavier. They just think he is naughty! Makes me so cross!!!

 

 

Anyway! Sorry lol! Rant over!

[dm2010]

Sounds like a full house to me on AS.

 

With the right long term support and environment that formidable intellect of Xavier's can be sharpened to a very fine point.

 

Yes it causes lots of problems but since a whole bunch of Nobel Prize winners were Aspies it can't be all bad.