‘How are you not insane?’ asks the Occupational Therapise after we’ve just finished discussing all of Amy’s issues, a list about the length of my arm.
‘I don’t know? I guess, I’ve got no choice?’
And the reality is, I don’t know. Nathan and I get to the end of some days and look at each other, wondering where we’re going wrong.
Only the thing is, we’re not doing anything wrong.
After discussing Amy today for over an hour and a half, the OT looked at me: ‘So, what do you think is up?’
‘To be honest? I think it might be Aspergers. I think there is something more here.’
Of course, the OT can’t make a diagnosis – we need a Paediatrician and a Psychologist to do that. But she works with autistic children every day and knows what they’re like.
‘Look, I know you can’t diagnose anything, but is it aspergers do you think?’
She looked at me.
‘Well, what we’re seeing is in line with an aspergers diagnosis. It’s all very typical behaviours.’
So that’s that.
***
Amy has some amazing strengths:
She is intelligent, oh so intelligent. She speaks well above her age level and she can problem solve with the best of them.
But, her auditory and visual sensory processing issues are pretty major and we’re not sure just how much of what we’re saying is reaching her. She prefers the dark, she can’t concentrate with background noise around and she melts down often.
She needs to reaffirm everyone’s relationship to her, every single day. ‘You are my Mum. Your name is Veronica. Daddy is my Daddy. His name is Nathan.’ She can’t answer some questions and she walks off in the middle of conversations, because they’re too much for her. She doesn’t understand strangers; everyone is her friend.
She has a lot of social problems and while eye contact wasn’t an issue when she was a baby, it’s getting too much for her now. And the OT suspects that Amy isn’t processing pain signals properly.
On top of so many other things that are aspergers related.
On top of the Ehlers Danlos.
On top of the Coeliacs.
She is beautiful and heartbreakingly difficult.
***
I knew it was coming. I knew.
It doesn’t make it any easier and while I know it changes nothing, except the services we can access, I’m a bit shell shocked today.
The OT (who is lovely btw) is astounded that no one has picked this up sooner. Amy has never been an easy child, she screamed for her first 12 months and things never got any easier. Not really.
And it’s getting harder as she gets older.
Everyone missed this – even when we told the Paeds that Amy was incredibly difficult, that she doesn’t listen, that she does what she likes regardless of what we say or do. They all missed it, even when the desperation must have been audible in our voices.
***
We have a lot of work and a lot of appointments and therapy ahead of us. Amy starts kindergarten in February and it is flying closer, faster than I’d like.
And all I can think is that I miss my grandmother an awful lot today, with an ache that hurts.
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oh honey. More hugs
It will get better. Not always easier, but at least you’ll know why the bad is so bad and that makes a world of difference.
Besides……. normal kids are boring
Hugs. It isn’t easy, but it is interesting and amazing. Having an answer to that question of why does help so much with getting services and help. So very many hugs and prayers going your way. Give yourself time to grieve, for the child that might have been and then time to learn and rejoice in the child that is.
Seconding Mistress B, normal kids are boring
I found the book ‘The Out of Sync Child’ and its companion book “The Out of Sync Child has Fun’ to be incredibly helpful for Heidi’s sensory processing issues – http://www.bookdepository.co.uk/book/9780399532719/The-Out-Of-Sync-Child-Has-Fun
If you would like a loan of the Temple Grandin book ‘Thinking in Pictures’ just let me know and I can post it down to you.
I think we all need to work on eye contact at the best of times. I sometimes forget here.
(((hugs)))
You’ll get answers and you’ll pull through, really you will.
And those who can help you will guide you through, just ignore those with the silly, unhelpful suggestions. xxxx
Good heavens chick! This is a lot to deal with
My little miss drains me but only has the behaviour issues – I am also not sure how you deal with all the rest!!!!
But I suppose if you have a diagnosis you can “treat” it!
Big hugs(()) It’s hard coming to terms with everything, especially when the one person you can talk to, help you, listen………. isn’t here anymore, believe me I know, but you will all get through it just keeping looking for that light at the end of the tunnel xx
@ Jayne; I’d be one of those with the silly, unhelpful suggestions, since I’ve never experienced any of these things, only read about them here on the web.
So I’ll just send hugs and best wishes. And hope that things go well.
Bigs Hugs V.
I couldn’t imagine it, I really couldn’t.
Take every bit of help and therapy that’s offered and don’t even think about kindy today, tomorrow or even next week. Take a cue from Amy and stick to the NOW for a little while. After Christmas re-evaluate and see if you think Amy is ready for the sensory exposure that kindy will entail. If she isn’t then see if she could go for just one session a week and gradually work up to full-time or just postpone it for a term or even more if necessary.
xox
Hugs for you my love. That’s all I have to offer.
xx
My mother is a foster carer, and one of her kids “possibly” has Autism, possibly Aspergers. A friend of mine believes her 2 year old daughter has Aspergers as well, so she took her to a paed and told him what her daughter would get up to. (all very similiar to Amy). She didn’t get a diagnosis, all she got was ‘There’s nothing wrong with your child, she’s just a naughty baby…” She was shocked and angered, and after taking her to another doctor, they’re aware there’s something wrong and will be running more tests. It’s common for doctors to NOT diagose Aspergers or Autism because a lot of them don’t believe in it. They believe it’s all just “behavioural problems”. Some doctors are just assclowns.
Good luck with Amy, I hope it gets easier once you know fully what you’re dealing with. *hugs*
Sending love & hugs your way.
I agree with Mistress B & Marita. Normal kids are boring.
I love my Aspergers son to bits! He was also thought of as a naughty kid. Hang in there things do improve it just takes a lot of time, hard work & patience. Get that piece of paper from the psychologist and access all the services you are entitled to. Finding out & getting help while Amy is young will make all the difference.
Oh sweety *massive hugs*. It’s hard, and it may get a little harder for a while as you’re introducing new strategies to help her, but you will triumph like no one else when she does manage to uphold a conversation, or listen and finally understand the action>consequences. She is a beautiful clever child, and with you as her mum, she’s gonna go far, I can feel it.
xxxxx
I love OTs.
Take care.
Its a daunting journey but you are on the road now. I can’t imagine how hard it is day-to-day but I think the advice up thread about focusing on the NOW is excellent advice.
I am here in Launceston at the conference my sweeting, reading your words.I had been thinking of you and Amy as I was sitting in my first session today. A question from one of the panels today was,
Are the Arts in Health a means of treating people or a way of helping them view the world?
My two best girls will be at the forefront of my mind as I gather information this weekend. I love you sweetheart and I am so pleased you wrote this post. Also lets just ignore the passive aggressive shit that is going on elsewhere and cut straight to the agressive/agressive. We don’t have time for peoples stupid games. We have important shit to do. xxx
Oh my. One of my very dearest friends is going through almost the exact same thing right now. It is no fun, and my heart just hurts for the both of you. Hang in there my dear. I don’t know how you’re not insane either, but you’re doing an absolutely magnificent job.
My son has Aspergers, I knew it when he was 3. It took me 6 years to get a diagnosis. The first paediatrician thought it was all in my head and referred me to social workers and parenting groups (I was a sinle parent so obviously I wasn’t coping). The second paediatrician I saw after that one retired, (this was in the public system) diagnoses ADHD, the third which who we saw after we moved to the country told me it didn’t matter if he was autistic, they didn’t treat it differently anyway. Finally I went private, spent 8 months waiting for an appointment, 6 months having all the necessary appointments and tests to get the diagnosis and over $1000.
If they are diagnosed before they are six, they are eligilble for early intervention (up to $12,000 in funding) so get onto the formal diagnosis as quick as you can. You need a paediatrician, Speech Therapist and Psycholoist to make the diagnosis. As my son was 9, all we get is 10 appointments with allied health services like OT and speech (Not free, just subsidised by Medicare), Carers Allowance, a health care card and it also got him an aide at school (the reason I wanted he diagnosis in the first place).
Sending cyber hugs
Just know you are doing a great job…
Oh, I know, it’s very hard. The line gets so much more invisible the more functional they are. We’ve never had the formal diagnosis of Ausperger’s, but we have a lot of little bitty things that need therapy: the low frustration level, the intolerance for change, the requirement of a strict schedule, the no need for social interaction. But, the rest, he functions well. I mean, he’s happy, it’s the teachers that just push to have a diagnosis.
It is hard…
Thinking of you.
ANd, I’m like you…why am I not insane? Well, that’s not a choice for me. Can’t happen. LOVE YOUR WRITING.
Just to add, I often suspect sanity is over rated.
Marita – Oh yes, sanity is definitely overrated!
Thanks everyone else
Oh, Veronica. It’s hard stuff. I haven’t walked in these shoes really but did go through a protracted battle to get my secondborn’s diagnoses with her three physical / genetic conditions (which you’re probably unaware of because I don’t blog about it – at all – but I’m happy to tell you here that one of them is Coeliac Disease, like me).
For me, it was difficult and challenging and crazy-making enough with a clearly neurotypical child whose behaviour was predictable and fairly straightforward, but whose body was letting her down. I’m just in awe of how you hold it together with a child who has both physical and behavioural challenges.
Veronica, one of the things I kept thinking when reading this post was thank god you live in a place with space. For the first couple of years of my babies lives we lived in a small flat. I don’t really know why I kept thinking of that or why I felt compelled to write it. Perhaps I was thinking that was a really long appointment and I bet you felt like running away and screaming into the hills at home.
To face all this the EDS, coeliac now possible Asperger’s is so much to take in for you and Nathan. I read your mum’s post first on her blog then her comment above. What shine’s through always when I read your blog and hers is the Love.
The days, I knew my youngest boy had epilepsy like his father and daughter has EDS like me I retreated into myself and had a major meltdown. I climbed out and fought. Both mine in my humble opinion have sensory processing issues and latterly I have been struggling big time trying to hang on to my sanity with the responsibility of it all. Professor G the man who knows so much about EDS said to me a long time ago that many with EDS have processing troubles but with that they are special. I hold onto that thought.
My thoughts today are very much with you Veronica.
My son who would not play with a soul would not participate in contact sports, the rest you know, is going clubbing next week his 18th Birthday. It is a weird day for me and do you know what the thing I am most suprised about is that he is going with friends. All those years of worrying about all that and it turns out he is going out to do what everyone else does.
Normally I comment with some purpose today it seems I am typing random stuff that I feel in response to your post. Amy is a lucky girl to have you as her mum.
Sending the biggest and most genuine of virtual hugs.
Has it got there yet? xoxoxoxoxoxoxoxoxo
You have such a lot on your plate and you’re coping wonderfully. That’s why Amy is yours’. We aren’t given a child that we can’t cope with, I really believe that. We’re all matched up perfectly. To learn, to grow. We find strength we never knew existed and we become better parents, better people, for it.
It seems she has so many amazing abilities that will help her through her disabilities. Please get your diagnosis so you know what resources you can tap into and then learn and grow together. Sooner the better.
Thinking of you.
x
Veronica, I know this must feel overwhelming at times but I still feel like you are such an patient and intelligent and persistent person and, as such, are the perfect person to be partnered with this little soul on her journey. Together you will make this work. xo
I found a heart-warming book on this online: http://www.bookworm.com.au/Book/All-Cats-Have-Asperger-Syndrome-9781843104810.aspx
February is not far away, at all. And it’s amazing the rate at which time flies. Hang in there, I had a friend who was severely autistic when young. No one thought he’d ever recover but, with the concerted efforts of especially his mum, he has come a long way and is now in his final year of school, successfully forming friendships and developing relationships and everything social. Sadly, this only occurs in a minority of cases which more often than not can be due to parents not seeing the process through. Many regrets later…
Hugs.
It’s all I’ve got.
My lovely, sounds like it is very hard for you but at the same time you are doing the best you can and finding out as MUCH as you can…so you are on the right track……that last line of your post made me feel quite sad…hugs to you xx
thinking of you all
biggest hugs to you..
am here if ya need..
Veronica, I just don’t know what to say. I just feel for you. So much hard work and heart-ache. And just the sheer effort of trying to figure it all out.
As I’ve said before, I’m tormented about the ‘age of diagnosis’ issue but it’s interesting to read what Ruby Blue and Natruly have written above on the benefits of early intervention and access to services. So much to figure out…
Just really feel for you and your girl. You are a brave heart and she is lucky she has you.
There is such a fine line between Aspergers and ADHD – some doctors will say they are completely different (they’re the ones that have never had a child of their own/niece/nephew with ‘symptoms’ of both).
It is also possible to have both….
My son, now 19, was more ADHD as a younger boy – now as a young man more Aspergers.
The hyperactivity/impulsivity mellows with age, and the ‘other’ issues become a little more obvious.
I would certainly try for two seperate and different opinions.
There is a female child psychiatrist in Hobart that is very good I am told.
Our intial diagnosis was made by a paediatrician as severe ADHD – we then moved on to a psychiatrist specialising in ADHD when there were other things that didn’t quite fit.
I am actually taking him to be reassessed when he finally gets some holidays.
A label isn’t important, for him to understand how he is wired, that’s the important bit
I think if you can skip that step you may find it easier, if it is possible for you to do this.
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