DS2 - Opinions/advice please

[mankyscotslass]

DS2 was born 5 weeks early, but was ok after an initial 3 days in SCBU.

He is now nearly 8, and things have niggled about him for a while.

He was slower to talk and has speech therapy, but was discharged from that by the time he was 4. He walked at 15 months so not really late. He cannot seem to walk anywhere, and has to be running/skipping jumping, hopping all the time.

He is bright and interested in everything, can tell you all about cars and computer games and remembers facts about football, even friends registration plates. He remembers events that happened to him from years ago.

He thinks everyone is interested in whatever he has to say, and will interrupt conversation to tell people things totally unrelated to what they are talking about, despite being told it's not appropriate, and will often continue with what he is saying, as if he has to get the words out or burst. Often the only way to get him to stop is to drag him away.
He struggles to make his sentences concise when talking, and its sometimes as though he struggles to get the words he has in his head out, so there are sometimes gaps in his speech as he thinks about what he wants to say next. He usually starts by saying "do you know", and then has to think about the response when the other persons says "no, tell me".

He is accident prone, and seems a bit uncoordinated, though his child minder does not think he is worse than a lot of others she has seen. PE is not his strong point, though his is very flexible. He is possibly slightly Hypermobile, but nowhere near as much as my DD. He is mostly left handed for writing, though is fairly ambidextrous, and depending on task will switch hands comfortably.

He is doing OK at school, but his handwriting is shockingly bad. The teachers have said his handwriting and inability to be concise are holding him back, as is the speed of his work. They are frustrated because they see so much potential in him. They say his vocabulary and understanding are very good for his age. He got a 2b for writing, 2A for reading, 2A for maths and a 3 for science in his year 2 SATS. His teacher told me that if he had better handwriting and pace he would have been a 3 across the board. School however are rubbish and because he is doing ok they wont investigate or do anything else with him, other than try to give him more writing practice.

Socially he has plenty of friends, but he gets upset very easily if someone doesn't share or says something "mean" to him. He cries to the point of hysterics when this happens, but calms down quickly and once calm seems to move on from the incident very quickly. He has a lovely sense of humour and is very tactile and affectionate, of the 3 kids he is the one who can drive me made but also reduce me to tears of laughter.

I'm at a bit of a loss, because each thing on its own is not a concern, but together the put a picture in my head that niggles. I have two other DC, and I just have an itch that something isn't quite "right".

Where do I go from here? School will be useless, judging by friends experiences, though they have recently changed SENCO. But I am not sure a doctors appointment is the way to go.

Sorry it's so long, but it's taken me ages to actually put what I am thinking on paper, and reading it has actually made me realize that there is probably something going on. I'm thinking Dyspraxia/Aspergers?

[kyz1981]

Not sure but some of it sounds like you could really benefit from seeing a good OT, They would look at some of the issues in much more detail then GP's or peads especially with the movement need and the handwriting, I would ask the GP if he can refer you or tell you the process to get seen by children's OT. Hope that helps

[mankyscotslass]

Thank you, I appreciate the reply, I will make an appointment with the GP asap then - the only thing is would I need to take DS with me? I'm not sure picking apart the issues in front of him would be a good idea, but I am not sure if the GP would see me about him without him being there?

[twainiac]

Hiya,
This is my first post here too!

So, not too much I can advise I'm afraid. Except to say that your DS sounds a lot like mine (although mine does not have many friends :-( )
We are in the process of diagnosis at the mo - I started with the GP, I went for an appointment without DS. The GP agreed to refer him based on what I said, however she did want to see him too. We made another appointment and told him that it was a new doctor who wanted to meet us all. Doctor had a quick chat with him and then he waited outside for a minute. The doctor said she couldn't see any problems but still referred him based on my testimony.

As for the rest of the process, well, it's been over a year now and a complete mess! But that's another story......

Good luck x

[2boysnamedR]

I agree with the ot. She was key is really getting to route of my ds's issues and noticed things I hadn't. Not sure if your son needs to go the doctors with you, just write out all the points above. Except for checking hypermobilty I can't see why he needs to be there

[mankyscotslass]

Thanks :) I will book into the doctor when they are back at school.

[PeteTrantersSister]

Your child sounds exactly the same as mine, (even the same SATS results!) and after problems at school last year took him to GP with a list of my concerns.
She wasn't helpful but I begged for a referral so eventually saw a paediatrician who then referred us to an OT.
Anyway, finally he has been diagnosed with hypermobility and Sensory processing disorder.
Sadly there is no help in our area for that, but I have read a lot about it and all the little issues make sense.
Maybe you could google SPD and see if it fits?

[mankyscotslass]

I thought I would come back to this and give an update.

We have just been to see a Pediatric consultant today. He has confirmed DS2 is Hyper mobile, and saw enough that he wants to refer on to Community Pediatrics - he has queried Aspergers or similar.

He also referred on to Physio, Occupational Therapy and to Podiatry, and we are going back to see him in six months. He said it is going to be a long process and a slow one, but at least we are on the path.

He asked if school had referred to an Educational Psych, given DS2 behaviour and history - and was surprised when I said they wouldn't because he was achieving enough for them not to feel it was worth it.

I'm seeing the school Senco tomorrow.

[mankyscotslass]

More progress - he saw the Occupational Therapist this week, she is asking the Community Occupational Therapist to go into school and observe him "in action", so to speak. Bet the school will love that.

He now has some theraputty and some exercises for his hands, as she agrees he is Hypermobile, though not as much as my DD. She does suspect Aspergers or similar, and was non committal about Dyspraxia, but said the Community Occupational therapist could assess better in school.

We have an appointment for the main Physiotherapy clinic too, in 6 weeks.

Small steps, slowly taken, but heading in the right direct. (I hope)

[mankyscotslass]

No word yet - the Occupational therapist yesterday said the Community Pediatrician would look at that, and also the community occupational therapist may have some input on that too - she did say that he definitely is showing some traits, but not others, and was more sociable then she would have expected, so she could not comment further and we need to see everyone we have been referred to and get the full picture then!

[spaghettisue]

Make sure they look into dyspraxia too. Make a list of all your concerns including being accident prone, poor handwriting etc. There are some similaries between aspergers and dyspraxia with regards to social interaction, and the clumsiness always rings warning bells for dyspraxia.

[spaghettisue]

Sorry, just realised you have mentioned dyspraxia yourself - I clearly cannot skim read as well as I thought I could!
It sounds like the ball is rolling, and hopefully you will get some clarification soon.

[mankyscotslass]

I will be mentioning Dyspraxia again, I am sure he does show strong traits of it too. Thank you .

[mankyscotslass]

Just had another piece of the puzzle that is DS2 put in front of me.

He usually struggles with mental maths, but as an experiment this morning while he dd his times tables I let him move around as much s he wanted. Normally I expect him to sit and concentrate.

When he could bounce/jiggle and spin around he could answer much quicker. It was as if the movement helped him focus.

So now I have something else to add to my list!

[senvet]

my dd is hypermobile and is doing her GCSEs in a separate room as she needs to change position so often, she gets a sofa and a giant bean bag as well as a chair. Results for mocks went up dramatically from the year before.

The slow memory thing is also like dd. She announce "Something really interesting happened to me last week" and after a pause "but I've forgotten what it was". She has weak working memory and slow processing speed.

That was teased out by a good indie EP.

Good Luck with it all

[mankyscotslass]

More progress - a community paediatrician appointment through for the end of the month, and a podiatry one now too.

My boss is going to hate me. (new job)

[mankyscotslass]

So we saw the Community Paediatrician this morning - she was very thorough.

She feels that DS2 has 3 issues going on - she suspects Dyspraxia and ADHD, but she feels the main issue for DS1 is that in her opinion he is on the spectrum - and quite badly affected. He is also very bright, very articulate and funny.

But she said she can't give a diagnosis on this evidence alone, and he needs an assessment by the education team to complete the picture and allow us to move on with definite diagnosis and identifying support. That referral has to come from the school, so she is writing to the school with her findings to ask them to refer him on. I hope they will

I feel upset and deflated really - it's what we suspected but hearing her say it has really affected me.

It doesn't change who he is - he is still my gorgeous boy with a brilliant sense of humour. But I am so scared for his future.

[youarekiddingme]

I've only just read this.

After your opening post I was going to say he sounds just like my DS (10).

He has a dyspraxia symptomology, suspected dysgraphia and is being assessed for aspergers/ asd in next few months. He also has hypotonia and slight hypermobility.

It's great to get all the agencies involved. It does feel as if your going round in circles at first - and everyone notices 'something' but nothing definite. But eventually it's all those 'things' that you can support and will improve the overall picture.

[Saracen]

I wonder, if you are feeling a bit down and worried about your son's future, do you think it be possible/desirable to meet some teens and adults who are similar to your son?

My 8yo daughter sounds very like your son, except that she has across-the-board learning delays and an easily-diagnosed underlying condition. I know lots of older teens and young adults who are now doing really really well, having found their niche in life and developed coping strategies for the issues they still struggle with. It always cheers me up to see them, and helps me to feel quite optimistic about my daughter's future. Many of their parents report having been extremely worried when their kids were younger, but say that eventually, though it seems to take forever, they blossom.

Obviously everyone is different, and the fact that somebody else's kid turned out to have a good life doesn't mean yours will. But, it just helps me to see that how they are at 8 or 9 is not how they'll always be, and that in time many young people mature beyond recognition, and there are all sorts of different possibilities for their future.

Quirky kids grow into quirky adults. It seems to me that most of society is determined to try to "fix" quirky kids by making them into something they aren't. But quirky adults are more often accepted, once they've found their role in life and people who share their interests.

[mankyscotslass]

Saracen, that's a really good idea, thank you.

I think I would be less worried if I could speak to others like him who were older. DH is far less worried than me and is convinced DS2 is going to be a groundbreaking engineer or inventor, or some kind of genius. He keeps telling me about Einstein, Jefferson and Mozart.

youarekiddingme they do sound very similar - I suppose we are now just playing the waiting game.

I have just got to hope that we get things in place before he starts High school in 18 months - I am not even sure if he will get the new equivalent of a statement, or if having an official diagnosis will allow us to apply to high schools on the social/medical need category.

I found out this morning that the local very good Catholic high school has an ASD unit linked to the assessment and support team the consultant is going to ask our primary school to involve. We would never normally meet the criteria for a place at the Catholic school - but now it seems like an ideal environment for DS. But if we don't get a statement I am not sure we can apply on the medical/social needs grounds.

I suppose I just need to wait and see what happens in terms of the primary going along with the consultant request that they involve the CLASS team, and take it from there.

But the clock has started ticking!

[Ineedmorepatience]

Hi manky firstly well done for getting this far, you are a brilliant advocate for your Ds! Many would have fallen by the wayside by now trying to navigate the process!

Your Ds sounds ausome and I agree with others who have said that with the right support to guide him through secondary he will find his way!

I love your Dp's attitude and I think it will be grewt for yourDs to hear adults around him talking positively about AS if that is the diagnosis he gets!

School has been a challenge for us I wont lie, I am on here all the time so you are bound to see some of my posts about how difficult it has been but you have a focus, the catholic school with the unit could be the answer but you may need to fight for it! Start asking questions now.

Most of all, enjoy him and be kind to yourself.

Good luck

[mankyscotslass]

Thank you Ineedmorepatience

I think I wa getting a bit ahead of myself - is 2 and 1/2 years before DS2 starts high school, not 18 mths. I think.

He is in Yr4 now!

So hopefully I will have more time to navigate the system.

[Ineedmorepatience]

Well in some areas you have to apply before the end of yr 5 for secondary and certainly by the christmas of yr 6 so dont worry about being ahead of yourself. You are exactly right to stay on top of things.