Finally have report - Please help me understand!

[bunnyrabbit]

Sorry but this is a long one..

DS is 5y 5m and always had tantrems and been a bit, well, eccentric. Had a few issues at nursery over the years and had him referred as went to a pre-scool for one term before school and they thought there was an isssue with his behaviour.

Assessed on 13th Feb and told he has a Social Communication Disorder. But he is so.. well... "normal?" (as much as anyone is). No I'm not in denial. I have read all the info and surfed some more so I know that he displays a lot of the traits of Aspergers: Sniffs his food, sensitive to noise, hate breaks to routine, smallest changes can set him off etc. but I feel such a fraud saying that my son is on the spectrum.

I've been waiting the report in the hopes it would give me more info that just "He has a social communication disorder and is at the able end of the spectrum" which is all I was told at the assessment

Diagnosis on the report:

1. Autistic Spectrum Disorder.
2. Possible Sensory Processing Difficulties
3. Attention and Concentration Difficulties (well then how come he can watch a 2 hour film without coming up for air?)
4. Hypermetropia: Left Amblyopia (incorrect. His eye turns because of his long- sightedness)

Highlights of report:

"....very sophisticated language skills presents language profile of much older child... eye contact variable....on occasions he did not respond to the therapists agenda, following his own .... disliked balloon activity...place hands over ears if noise level rose....has a degree of hypermobility elbows wrists fingers and reduced core stability...."

So I am none the wiser.

Where is he on the scale? On the able end? What does that mean? Does he have Aspergers? What is the impact of Hypermobile joints?

I haven't contacted any of the support groups I was given info on as I feel so daft. Everyone else has such a hard time and their children have so many obstacles to overcome, how can I call them? How can I claim from the DLA when there really isn't a whole lot wrong with him??

SALT is supposed to be contactinmg me for a follow up as is the Dr at the hospital as have blood test forms. Follow up with Paed in 6 months......

Am at a loss really... not exactly drowning but floundering....

BR

I'd see if the person who did the report can be a bit more help to you about some of this.

It sounds to me like they're saying it's Asperger syndrome (very sophisticated language skills), so that would mean the more 'able' end, yes.

It's well worth getting in contact with groups even if you feel he's not needing a lot of support at the moment.

Firstly, as school gets tougher, he'll probably find it harder and you'll see more signs of ASD etc.

Secondly, I know how well I disguise the difficulties I have. People often think "hey, she seems really able - she doesn't need any help". Because at the 'able' end it's a hidden disability and we don't always say what sort of hell we're experiencing, it can look really 'mild' and people just don't understand how we get worn out, exhausted, panic-stricken, overaggressive, unable to cope with a lot of environments, unable to make friends, or whatever else. Then we often get blamed for all of this because we're so 'mild' and supposed to be able to cope .

Each of us needs some tailored help, I'd say, so there's no reason at all to worry about feeling like a fraud.

Bunny rabbit please don't deprive yourself of the help of support groups because you feel others have it harder. You do need support right now.

I would have been lost without the support of Riven, 2shoes and Bella on here in the early days, they have been there and know it all.

Thank you both,
I think I will call the Occupational Therapist.

I have an inkling of how hard it can be for him as I can feel (call it mother's instinct) when he is unhappy/stressed/can't understand something and can usually tell when it is something he can cope with or not.

I am of the opinion that everyone who deals with DS should be aware of the difficulties that he has/will have. MIL asked if I would rather not tell people because of people's reaction (What? Yelling ogre and running screaming!! Give me a break) I understand what she's trying to say, but IMHO if people cannot cope, then they are not people that I wish to associate with, or want DS to associate with for that matter.

I do talk to DS a lot about how he is feeling and he is getting very good at explaining his reaction to things which helps immensely.

Am I correct in thinking that there are times when he won't be able to explain? That sometimes it's instinct/gut reaction/emotional reponse to something? Only I see so much of myself in the report and I too have quite extreme reactions to very trivial things. It's a very strong almost physical reaction that I cannot explain and sometimes I feel I'm going to explode if things aren't sorted to my expectations.... have to count to 10 and take deep breaths a lot (also something I have tought DS to do).

I will speak to DH and call the support group over the weekend. If nothing else I do want to talk to other parents about how/if they discussed the dx with the DCs.

Thank you again

BR

Yes, we're usually hopeless at explaining how we feel. Even if I'm feeling absolutely panic stricken or in huge pain, my training tells me that I have to seem entirely 'normal' so I can't work out what to say to tell people that I'm not ok. Mumsnet occasionally sees that panicked side of me, because I'm allowing myself to at least write it out. And sometimes I just don't notice when something's very wrong because there's so much else going on anyway, so I can feel really sick or injure myself and be totally unaware of it until I get enough 'space' to be able to think.

Wow amber. Now that is useful to know. DS is always hurting himself in one way or another (boys will be boys) so will add that to my things to ask him every night:
Did you hurt yourself today? Did you tell anyone?

Cheers,

BR

I often don't know until I find the bloomin' great big bruise somewhere

LOL.

DH is always spotting my bruises and asking where they're from and I mostly don't have a clue, which is daft as I don't bruise easily so must have hurt at the time.

Nothing more than two DSs and my mostly missing 20s (!!) has left me with a non-existent short term memory!

It sounds to me as though he might be at the milder end of the spectrum. Good language skills can be fairly common with AS. The danger can be if you have a child whose spoken language is much better than their level of understanding. It can be hard to convince some people that a child who sounds much older than they are actually finds it hard to understand and follow relatively simple instructions. Obviously this might not apply to your ds.

One of my boys has very flexible joints as part of his ASD. This means that he can be quite floppy and has the "reduced core stability" that your ds' report mentions. On a day-to-day basis it means that he finds it hard to sit on chairs without slipping or sliding off them. He has a special cushion that helps to sit still. One problem can be that a child in school has to make such an effort to sit properly that they are not concentrating on their actual school work.

My ds is also quite clumsy and has a tendency to fall over a lot and crash into things. Again this will probably depend on the individual child.

If your ds is your eldest child then it's possible that, like us, you do things for him without realising that other children don't need this level of help. For me personally it's only when I fill in the DLA form that I realise just how much my two boys need. If you aren't sure about applying for DLA then I would try keeping a diary for one or two weeks of what you do for your ds. Include everything, even things like avoiding taking him somewhere because you know it will be too noisy for him, or having to repeat instructions for him. If he gets upset about something, make a note of what it was about, what you had to do to calm him down and how long it all took. You might find that it's more than you realised.

.. a quick incidentally: DS5 (ADHD) can and does and always has been able to sit thru films he enjoys, as a toddler he would watch 'beauty and the beast' back-to-back and back again! ... but he tends to fidgit whilst watching (flicking toes, fingers, shuffling, squirming) its only when you watch him closely you realise that actually he doesnt sit still at all!

Interesting point misscutandstick. He does tend to be a wiggler, picks at his lip bites his nails, plays with other parts of his body (how do you stop boys doing this???) He can watch Guys and Dolls (150 mins) without appearing to blink. (although he will pause the DVD to go to the loo!!) I shall watch more closely next time.....

Still not sure but I really have no experience or knowledge of ADHD. Was not expecting to see it on the DX to be honest. will need to do some research.

coppertop. Thank you. All stuff I was totally unaware of. He does say that he feels all floppy when he's tired but we just assumed this was an endearing way of saying he was all tuckered out.

Spot on re the language. He uses vocab that my friends DD, who is 2 years older, asks him to explain. He understands most of what he says but I sometimes get the feeling he's just putting long words together 'cos they sound good. And they generally do.

He is our DS1, although DS2 is only 11 months, and I will take more note of what I do but I am trying to make him do stuff himself. He can do so much when he has to (gets dressed and washed by himself) and I wonder how much is just him trying his luck. e.g. Can magickly do his new trainers up if I threaten to take them back to the shop.

I like the idea of a diary, but still not sure that we really have any real reason to claim for benefit.

Thanks

BR

hello bunny rabbit before you call anyone please look up www.treatingautism.co.uk to help you understand how you can help improve your child,a fantastic thing to give to get 100% eye contact is pure cod liver oil. please also look up www.nutricentre.com vast range of books on the topic of autism. sensory issues please ask your library for the out of sync child a wonderful book task the camhs doctor for an immediate refferal to slt speech and language so your child get it regularly at school or after school, ask educational psychologist at education in the council for an assessment for a special needs statement.
start with the first one fist.
finally for support on statement the parent partnership number from council and support in general contact-family.org

ps hands over ears is a sensory issue he will need ot but to improve sound issues please put a hat on their head when outside with trains buses sirens morobike hoovers public toilet dryers etc
eptory and vestibular issues needs an assessment with the occupational therapist
you might also want to consider play program in schols and in home schooling on sonrise program, aba programs.
he is in the middle of the spectrum but towards the upper end if someone asked me but i am jusr a mum of an asd child..ask away if you need more help.......

Wow thank for all the info pushkar.

I will have a look at www.treatingautism.co.uk.

I know nothing of the sonrise program or aba programs so will look these up too.

DS doesn't need the services of the SALT, but they are coming round for a follow up visit to answer the many any question we have. I've chased this up to day. I'm also waiting for an appointment for Asessment of Sensory Processing Difficulties (apparantly we're on the list)

Whereabout on the spectrum is your DC?

BR