Son with learning difficulties always running!

sadsy

Hello vickstick34,
I don't have much advice.

My son is mild Aspergers, slightly autistic. It's been a long road. From school and doctor saying all OK to then saying, well yes there is something different. The school has been main point of referral to NHS specialists.

He has in the past had strong compulsive, repetitive tendencies. When 5-7 it was strongest, he could not stand still and haircuts were particularly awful for him, to sit all that time. He likes a routine with no surprises. He is sensitive to sounds and is really easily distracted in class. Teacher told me last week that he never completes anything.

He's had extra help at school. Schools vary with the amount of support available for children with needs. When school choices come up. It is well worth discussing what arrangements or experience they have with your child's particular need before committing.

He's had some nervous ticks, though they have come and gone. Because he is slightly different, he has trouble being bullied and picked on at school.

I have found that fun physical exercise helps him. He's at his worst when indoors all day.

He's ten now. He is so lovely to be with. He is kind and clever at computer games. Reads with a passion. His need is for unconditional love, which is what I can give him.

sy

Posted on: July 26, 2009 - 10:44pm

Pansy

It's hard to say as I havn't met him & I am not an expert either, but I do have two children with Aspergers & you have mentioned 3 things that are very Aspergers:- routines, noise/light sensitivitys, fussy with food. Obsessive behaviors can also be part of it. Alot of children have more than one particular thing & are often diganosed with Autistic spectrum disorder (ASD) because they do not fit into one particular thing. If your son is hyper then maybe some ADD.If obsessive, then maybe some OCD (obsessive compulsion disorder) but Aspergers, here are some things:-

does he get upset if you change your plans?
problems with noise? to loud? likes loud noise?
any other sensory issues? wind on face, smells? etc
clothes: to tight? not tight enough? pulls socks up tight, not right!? Labels have to be cut out?
trouble sleepin: bed to lumpy?, needs heavy covers on?, noise keep him awake or frighten him?
tantrums? often are due to not understanding situation because what he has in his head is not what is happening.
Tahes things literally? (this one bit difficult as he is so young that he will alot of the time anyway & this would be more noticable as he gats older).

I'm sure there is more if I were more on the ball but I have had a few glasses of wine tonight!!
Tell me more, I'm sue I may be able to give more advice on this. I have learnt quite a bit over the years & come into contact with many different children apart from my own, but remember I am still not an expert. especially after a few wines :lol:
Paula

Posted on: July 26, 2009 - 10:53pm

Pansy

oh food!
as well as being fussy, sometimes dont like the texture of certain foods & also a biggy is often dont like foods touching each other! My son has been put of beans for life beacuse of this. I never used to understand when he was about 4& 5, but later realised that he could not eat anything on the plate if the beans had touched it!

Posted on: July 26, 2009 - 11:01pm

vickstick34

Hi Sy,

My son is just the same. He cannot sit or stand still for more than a few minutes, I think thats why he runs so much.

I must say tho, that his school are excellent. However, when I chose his school, I made sure that I chose a school with an excellent special needs programme as I knew he was going to need it. He also has a grant for a special ed TA who works just with my son.

The difficult thing for me is that because we dont have a diagnosis as such, its difficult for us to get a structured programme in place for my son. We are at the moment, just working with what we have.

I have a bit of an issue with my health visitor at the moment. She can't seem to accept what I see everyday and is blaming his behavior on things like him being an only child and exerting his authority. I'm in the process of changing my doctors surgery as I don't want her to look after my son anymore. I just feel like I'm hitting a dead end all the time, and that no one is listening to me. I even considered going to a private paediatric specialist but obviously, cant afford it. Just feel so frustrated.

Posted on: July 26, 2009 - 11:10pm

vickstick34

Hi Paula,

yes, he's noise sensitive, doesnt like washing machine (better since i got a new, quieter one) also hates flashing lights. I used 2 sometimes take him to a local restaurant, and we would have to move seats until we were in a place where he couldnt see any of the fruit machines! He also won't touch a cup if its damp, and won't walk on the bathroom floor if its damp. Hates to touch a glass if its too cold aswell.

Hes ok with changing plans, he adapts to that fairly well, and we dont have much of a problem with food except that he can go for days when he eats the same for lunch everyday. but as he has school dinners we r able to get round it a bit. they encourage him to try new things as do I.

He also runs and walks on his toes alot of the time (we have been referred to physio but its taking 4ever) and getting him to make eye contact is next to impossible!

And yes, he does take things literally. He also can become a little withdrawn if he has to encounter large groups of children!

Phew, seems like I'm rambling alot, but its good to write all this down as telling people directly really overwhelms them!

Posted on: July 26, 2009 - 11:13pm

sadsy

Hello Vickstick34,
Hang on a minute, Paulasgems is taunting me again with her glasses of wine in the evening! I'm on anti-Ds and can't drink - which she knows full well! :lol:

The NHS referrals I'm sure came from the schools Luke attended. A formal diagnosis can help obtain resources at schools. Definitely change health visitor, good move.

Luke has attended social communication class at school in last 2 years and has really benefited. Eye contact can be really poor with Luke too. He doesn't listen unless he is looking at you.

The not being able to sit still has really improved too. Maybe with age?

It is really frustrating, please stick with it. The dedicated TA is really excellent. I'm so glad you have this. Have you approached the school for a specialist referral? They see your son all day and should be well placed to give an accurate report. They will be keen for a diagnosis too, as I'm sure it helps with school budgets.

We never really had a programme as such, even with tentative NHS diagnosis. It was more a case of it allowing access to existing school schemes and resources. We did get some behavioural tips and a better understanding of our son.

Don't give up!

sy

Posted on: July 26, 2009 - 11:28pm

Pansy

soundl like Aspergers to me! toe walking is a classic!
but I would say he has other issues too with that, I know alot of other children that have ADD as well as the Aspergers!
& the hyper bit sounds like that, it is very common to have both.
mine dont though. Although my eldest daughter did have a touch of OCD when she was 11.
Sy, sounds like Luke may be bit hyper with it too?
Paula

Posted on: July 26, 2009 - 11:30pm

Pansy

are you following me on these threads Sy :lol: :lol: :lol: :lol:

Posted on: July 26, 2009 - 11:31pm

Pansy

Vickki,
have you a good Dr that you like?
you are FAR BETTER OFF asking your Dr to refer you to a pediatrician (i have no idea if I spelt this right & dont care :lol: )
better than going the school route. You DO NOT have to go through the school, not if you get reffered to 'P' (not spelling it agin!) by DR.
Paula

Posted on: July 26, 2009 - 11:36pm

sadsy

Vickstick34,
yes I have to say Paulasgems is more knowledgeable on this than me, even after several glasses of wine!

Luke had short spells of hyperactivity in past, but it seems to have gone naturally in last 2 years. School say Luke not ADHD.

huug

sy

Posted on: July 26, 2009 - 11:52pm

vickstick34

We actually have a paediatrician (should be able to spell that right, I am a nurse :lol: ) appointment on the 25th august, which I pushed to get, so I can talk to them at length about the situation. I'm not backing down now, I want to know what we are dealing with so that everyone can give my son the right support.

NB. When I say 'we' i mean me and the ex who is extremely involved with our son and very supportive.

Posted on: July 27, 2009 - 12:03am

sadsy

vickstick34,
really pleased you and your ex are together on helping you son's development and support.

I'm at the opposite end, my ex wouldn't tell me where Luke's last appointment was. She took her new boyfriend instead. I was a bit annoyed.

Not sure if I've managed to help you at all tonight.

I know you will get where you want to be with this, you are rightly very determined and knowledgeable.

hug

sy

Posted on: July 27, 2009 - 12:19am

sadsy

by the way,
I did once bet luke £3 he couldn't sit still and be quiet for 5 mins.

You know what? Pesky Luke managed it! I had to pay up!
He wanted it to be a regular thing, hehe.

:lol:

sy

Posted on: July 27, 2009 - 8:33am

Louise

Parenting specialist

Hi vickstick

It certainly sounds as if you need to be pretty assertive and get a proper diagnoisis when you see the paediatrician, but I guess you will know the system better than most, being a nurse. I know my son's prolems were fairly minor but I had to really push and was labelled "over-anxious mother" in the hospital notes :shock: but I was right! There will probably be a local support group for parents of children who have similar issues. What's your nearest town? I will have a dig around. It's important to like and trust your Health Visitor so that's good that you can change to one you feel happier with.

Posted on: July 27, 2009 - 10:35am

zane26

vickstick34 wrote:

Hi all,

Am looking for advice really.

My 5 year old son has learning difficulties, but I haven't been able to get to the bottom of what exactly. I have been told he has expressive language disorder and autistic tendancies but thats about it. My problem is that my son exhibits major obsessive behavior, he runs backwards and forwards, backwards and forewards, etc,etc,etc.....you get the picture! In fact he's doing it right now. I have spoken to my health visitor who tried to convince me that my son was testing boundaries as he is an only child!

My son also has certain routines that he sticks to, he can be fussy about trying certain foods, he's noise and light sensitive aswell. I have an appointment with the paediatrician in august, but wanted to know if anyone else has experienced the obsessive running with their kids.

I really want to get a diagnosis of some kind for my son, but feel like i'm hitting my head against a brick wall trying to get anyone to listen to me!

Hi my son has the same tendencies. He doesn't associate with change even things like meal times he will eat the chips then the beans then the chicken nuggest then he will dip his finger in the sauce. He is 6 now and we had years of being passed back and forth between consultants. In my opinion they all fob u off, u have to push them. It took us two years after they first said he has austic tendencies before he got the asd diagnosis, and we pushed for that. Just get on their case, make a daily dairy of your sons behavious. Search it on the net and print offf the infor u gather. Don't give up and do bare in mind that with conditions like adha and asd etc they are reluctant to give a diagnosis early as mistakes have been made and once u get that 'label' you are stuck with it so to speak. Hope this helps and u can ask me anything u need xx

Posted on: July 27, 2009 - 8:45pm

vickstick34

TY, Zane. I am really gonna push this now. I did think of keeping a diary, havent got round to it yet, but am going to start when my son gets back from holiday with his dad. Thanks to all for the excellent advice. I'll keep u posted with how this go. And does anyone have a tent i can borrow so i can camp in the paediatricians office until he listens to me? :) :) :)

Posted on: July 28, 2009 - 8:21pm

Pansy

good luck with it all Vicki :D
I am just starting the process of trying to get my son a statment, it WILL NOT be easy, they do everything they can not to give them out in Dorset!
Paula

Posted on: July 29, 2009 - 7:25pm

susie36red

Hi there,
I do not know how much help I can give but here goes. I work and support adults with Autism. I am a registered nurse in Learning Difficulties with a post-grad in Autism and behavioural problems.
This is not a diagnosis, but it definitely sounds as if your son is on the Autistic spectrum. The obsessive running back and forward is part of the behaviours that are associated with Autism. Walking on tiptoes is associated with Aspergers, but I think there may be more to his "Autistic tenancies" than Aspergers. A proper and formal diagnosis is needed as this will open doors for you and your son to get the right support. As your son seems to already be diagnosed with "learning difficulties" try and get in contact with your local COMMUNITY LEARNING DISABILITY TEAM, these are professional trained medical practitioners who will support your need for diagnosis and the right support.
Good luck with the appointment in August.
More information on Autism and Aspergers can be found at the National Autistic society.
If you need anymore info, get in touch!!

Posted on: August 4, 2009 - 10:35pm

Louise

Parenting specialist

Thanks for that information, Susan :)

Posted on: August 5, 2009 - 10:30am

vickstick34

Thanks Susie, thats a real great help. I have spoken to a few people that have worked with special needs children (I hate that phrase but cant think of another at the moment) and virtually everyone is saying aspergers or autism. My appointment with the paediatrician is in 3 days so we should know more then.

wish us luck!

Posted on: August 22, 2009 - 8:46pm

sparklinglime

I hope that things are able to move forward from this meeting.

With my son I had to lock doors to stop him getting out. He still disappears though, and he's 13. Too big to drag back now.

Posted on: August 22, 2009 - 10:36pm

Louise

Parenting specialist

Hello visckstick 34

Great to hear from you, I was wondering how you were doing :)

Good luck with the appointment, do please let us know the outcome.

Posted on: August 23, 2009 - 7:57am

sadsy

vickstick34,
just wanted to say hi.

sy

Posted on: August 23, 2009 - 11:46am

vickstick34

Hi Sy, Hope u r doing ok.
Just wanted to let u all know that Carter had his paediatrician appointment this morning and has been diagnosed with Austistic spectrum disorder. He has been referred to the educational psych, speech therapy (again) and the occupational therapist. The doctor has put a diagnosis of Autism on the correspondance so that we can get access to the services that we need. The educational psych will be able to put a definite on everything but I am just so relieved that I am finally being listened to and am not just a neurotic mum! We can start to move forward now with things.

Posted on: August 25, 2009 - 3:31pm

Louise

Parenting specialist

Oh that is good news vickstick, I know you may not want a "label" on your son but as you say, what a relief to finally get things moving and get him the support he needs. Hope you are feeling Ok and not exhausted by it all!

Posted on: August 25, 2009 - 8:39pm

vickstick34

hi louise,

I think i've been permanantly exhausted for months now :lol: . Its funny but I dont feel any different than b4 the appointment. I think thats because I knew what the outcome was going to be. It was getting everyone else to listen to me that was the exhausting thing. Its important now to get everyone focused on the same goal - helping Carter. Obviously I still need to think about myself aswell but I have a great support network in my family, and believe it or not, in Carters dad, so things are looking better now. Its a long road ahead and probably isnt going to be easy but at least now we are prepared for things more. I want to try and find local support groups for both of us and also parent and child groups where Carter can interact with other children like him. Lots of work but will be worth it in the end. I would not change my son for the world, he is still my wonderful little man and I feel blessed to have him :) :) :)

Posted on: August 25, 2009 - 11:46pm

sparklinglime

Hopefully a few things will be put in place now to help him.

I'm so glad you have support, as I know how tiring it can be.

Posted on: August 26, 2009 - 12:04am

Louise

Parenting specialist

Hi vickstick34

Sounds like he is a lucky little chap to have such a supportive mum and dad, too :D

Yes it is exhausting, trying to get the powers that be to take your child's condition seriously, and to get things moving on their behalf, but you have done it. WELL DONE!

Posted on: August 26, 2009 - 10:15am