Thursday, 21 June 2012

We are NOT OK.

Yesterday, Tim & I expressed our sadness to some friends that many people close to us haven't been in touch about River's diagnosis. Quite a few friends have sent us virtual messages of support or virtual hugs, but there are many more who have kept very quiet. In fact, many people haven't been in touch at all since we began this emotional journey. 
One of our friends made a really valid point that I hadn't considered: I often write about the different techniques we use with River, the constant battling to get appointments, what happens at various appointments and lots of proactive, practical stuff. He said the blog gives the impression that we're focussed, driven, and generally sorted. Like we're coping just fine. He also said that people can feel awkward about these things, and not know what to say.

So maybe you're reading this blog because you're a friend or relative of ours. Or maybe you know the parents of an autistic child. Or maybe you're a teacher or therapist of an autistic child. Regardless, I just want to open up about a few things that perhaps I haven't expressed very well in my other posts.

1. We are NOT OK. Two days ago, we were told that our baby has a lifelong neurological condition. There is nothing OK about that. Yes, we understand we need to think positively. Yes, we're hopeful that River will be high-functioning, learn to talk, go to the village primary school- but nobody can tell us whether that'll happen. There is a fair chance that River may never speak, or speak very poorly. He may have to go to a special needs school. Right now, and probably for the next few years, we will be in limbo. We'll try to focus on each day, but ultimately we will worry every day what the future holds for us and our baby. It has only been 6 months since we initially realised something was wrong. We haven't got our heads round it, we are still grieving.

2. We feel lonely. We feel caught between two worlds. There seems to be an ever-widening gap between River & his peers, & it's scary. We're worried that our friends will ditch us as River isn't very good company for other children. Various professionals have recommended special needs groups to us, but we don't feel we fit in there either as River is very physically able & looks 'normal.' We've discovered a lovely autism group, but the children are much older than River. So therefore, we feel lonely.

3.We need a hug. I'm not talking physical affection, I mean a metaphorical hug. If people feel awkward & don't know what to say to us- it doesn't matter. "Thinking of you." "Sending you hugs." "Xxx" We don't need a big speech from people. We just need to know that you care and are here for us.

4. We feel guilty. So River has Autism. He's not sick. There's no threat to his health. There are so many people in a worse position than us. We have a beautiful child, a nice home, Tim has a job, we're all healthy. There are families out there without a roof over their heads, in hospital with a sick child, who can't afford to feed their children-what right do we have to feel so self-pitying just because River's autistic? This fills me with guilt.

The last two days have been spent either crying, fighting back tears, or pouring all our energy into research research research. It occured to me earlier- who knows? Who knows how devastated & crushed we are? Is it their fault for not asking how we are, or our fault for not reaching out & asking for help? I don't know. 

But there it is. We're not fine, we not doing an amazing job of coping, we're struggling. Struggling with our sadness & fear.

Tuesday, 19 June 2012

"It is definite that your son has autism."

It's ironic how you can be desperate for a doctor to finally say those words to you, and when they do, you want them to take it back immediately. You want to pretend they never said it, and go back to the way things were- desperately seeking a diagnosis to confirm what you already know in your heart, but still having a smidge of hope that maybe, just maybe, you're being overdramatic. Maybe he's just a bit delayed.
But it's too late. You've asked the question, and you got a pretty solid answer.
"Do you think he's likely to be on the autistic spectrum?"
"I'm pretty sure of it."
"How sure are you, because I'm 99.9% sure but I'm no expert, I'm just his mum."
"I'd say it is definite that your son has autism."

We fought hard to get this appointment with the paediatric autism specialist. She is the best, and I wanted her to meet River as early on as possible. However, the appointment was scheduled for 3 weeks before his 2nd birthday. "You won't get a diagnosis on the first appointment," people said. "Definitely not before two. That's far too young to diagnose." Online autism forums are full of stories of people battling for a diagnosis for years and not getting one, stories of children being observed at Child Development Centres for weeks. I had emailed some information to the specialist a couple of months ago, and she explained that as River is so young they might have to give him a provisional diagnosis and not formally diagnose him until he's older.

The specialist started off by asking us when we first had concerns for River. She then asked what other professionals were involved and what River's current development level is. Can he hold a crayon? No. Does he recognise photos of you? No. Does he understand the word 'bath?' No. Does he say any words? No. Will he stack blocks? No.
River spent the whole time eating, and we pointed out that if he wasn't eating then he wouldn't have coped with being in the room at all. He briefly looked at her, but not for long- and when she rolled a ball to him, he just cried. He also walked around the room a lot, often on tiptoes, in his own little bubble, occasionally breaking out into a big grin or chuckling to himself.
She asked about the pregnancy, birth, how well I bonded with him as a newborn, his overall health, checked his head circumference, and asked about his diet.

She then said that he'll need to have a blood test done on a separate date just to check that River doesn't have Fragile X or any other chromosome abnormalities, as there are some that are very rare but serious, and present themselves with symptoms like autism.

I think that was when I asked her opinion. She didn't mention a provisional diagnosis at all, so I don't think there is any doubt in her mind. I asked if she thought he was high-functioning, and she said that they can't assess where on the spectrum a child lies until they are school age but said he does seem severe in some aspects. She said not to focus on that for now, and that some children who seem severe make a lot of progress in a short space of time.
She asked how we were feeling & both Tim & I got a bit teary. She said that even though we were sure of River's autism, having it confirmed is still a shock and we should allow ourselves to grieve as we'll be following a different path to what we'd envisaged.

I don't know what else to say about it just now, but I read a fantastic poem in the Cerebra newsletter yesterday that I'd like to share.

The Journey

When I looked into your eyes
You didn't hold my gaze
I knew that you were different
In those early days

You didn't crave my cuddles
You wouldn't sleep at night
I knew deep down inside
That something wasn't right

You did not respond to me
When I called your name
I felt like a failure
And that I was to blame

I longed to hear your voice
But all you did was cry
I started to believe
There must be a reason why

When you got the diagnosis
I didn't know what to do
They told me you had Autism
And it would always be part of you

We started a new journey
It had only just begun
I was still your mother
And you were still my son

Although you couldn't say the words
I knew you understood
That I would do my best for you
As every mother should

The road ahead was twisty
With many a sharp bend to turn
The path ahead seemed daunting
With so much about you to learn

Although I wasn't certain
Of exactly what to do
I soon began to realise
I would have to fight for you

Our journey would continue
We would stay on this road together
I would be right by your side
Always and forever.

By Donna Woods

Saturday, 9 June 2012

Welcome to Holland

Around Christmas-time last year, when our Autism journey first started, somebody recommended this poem to me. It is the perfect way of describing how it feels to raise a child with special needs. I still can't read it without feeling upset, but it's improving!!

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Saturday, 2 June 2012

Pre-School Entry Plan and our family holiday

On Monday we had a meeting with the pre-school that River will be starting in September. Present were the pre-school's SENco (Special Educational Needs Co-ordinator), the lovely educational psychologist, and the Area SENco. We were in a little side room, and immediately River got upset. I'd brought a couple of cake boards with me for him to spin, but he was really anxious and kept standing on me, climbing up me, pulling my hair, crying. So Tim took him outside to play on the grass.
We discussed what River main interests are, his passions, and then moved onto River's main issues are, what I think he's going to struggle with, and finally a list of actions to be put in place by September so that River can settle into pre-school as comfortably as possible.

It's funny, I often find that when people first meet River & I, they expect me to be a bit clueless (Tim thinks it's because I look very young, & maybe it's because I'm a first time mum, or maybe I just look ditzy!!) so I really like it when I start talking about River & people acknowledge that actually I know him very, very well & have put a lot of time & effort into knowing him, his strengths & his weaknesses and we've put a lot in place to help overcome his obstacles.
The main outcomes of the meeting are that River will have one-to-one support,  a really gradual settling-in period, the nursery will get some extra funding for him, he is to have a quiet area set aside with objects to spin, and it will be reviewed in October.

This week we've been off on our hols to Cornwall. We've been sooo looking forward to having a break, switching off and enjoying some quality family time. River doesn't handle change very well, however, so we put a lot of things in place to help the transition. For two days prior to the holiday, we set up the travel cot in his room for him to sleep in at naps & night time so he could get used to it. We packed his favourite toys, books, DVDs and CDs, blackout blind and his favourite foods and planned the two hour drive to coincide with his nap.

When we arrived at the chalet, he was a bit clingy but I stuck his Thomas DVD on & he was soon happy to explore his new surroundings with something familiar in the background. Thankfully River slept very well for naps and overnight throughout the holiday. We stuck to his usual timings and he coped brilliantly.

We planned a few activities but knew we'd have to be flexible. We went to Crealy Adventure Park- lots of farmyard animals. River wasn't remotely interested in any animals- I picked him up and put his face a few inches from a couple of massive horses at one point, and he was looking from side to side as if they were invisible- it might as well have been a brick wall. What he really loved was running after the park maintenance van! He also had great fun just walking along holding hands, as there was music being played throughout the park- and he loves music! Overall, it was much more successful than anticipated!

That afternoon, we went to the beach. It was absolutely beautiful & the water was calm and shallow. I was hoping that River would enjoying playing in the sand, but after a couple of steps he was trying to climb up me and crying, clearly not liking the feel of it on his feet. We were really excited about taking River paddling, but it didn't really go as planned. He let the water run over his feet a couple of times, looking rather confused, before crying and putting his arms up to be picked up. He clung on really tightly as we made our way back to the soft sand, and cried some more when I attempted to stand him on it. The only thing that would stop him crying was sitting on my lap eating slices of apple. Once the apple was gone, he continued to cry until we reached the car. Poor wee thing. It was a really sad moment for Tim & I, as there were several other babies & young children all playing in the sand etc & we desperately wanted River to enjoy it too, but it just caused him real sensory overload.
The next day, we went swimming in the indoor pool. We took one of River's rubber ducks that he likes to chew. I was a bit worried that he'd scream the whole time but he coped really well! There were only about 5 other people which helped, and we had the separate toddler pool to ourselves. I wouldn't say he enjoyed it though- he 'tolerated' it. He didn't smile at all or make a sound, just clung onto us, chewed his rubber duck & stared into space. Totally zoned out. Was a shame it wasn't enjoyable but great that he was distressed by it!
The next day, we went to Newquay aquarium. We went last year, when he was 10 months, and he was in awe- he's so visually stimulated & all the pretty colours and fish darting about captivated him at the time. We were sure he'd feel the same about it this year so were a bit gutted when he didn't want to look at any of it, and just cried and wanted to leave. Think we managed about 20mins in all- and it wasn't cheap!
The aquarium is right by the beach, so we decided to have another go with River. Since he obviously didn't like the feeling of sand or sea on his feet, we decided to keep his shoes and socks on. He much preferred this! He was happy to hold my hand and walk across the beach. He then took an interest in the water and was even happy to paddle (with his shoes on!!) His shoes & socks obviously got soaked, but it meant that he got to experience the sea, and the feeling of having wet feet was more acceptable to him as his feet weren't in direct contact with the water. Fab!!

Something that we found quite draining was the repetitive noises that River was making. Whenever his Thomas DVD was on he would run up and down the room constantly, making this loud, deep, gutteral noise. Over, and over, and over again. I think it must have been linked to feeling anxious in a new environment though as he hasn't been doing it as much since we got home.

I have been trying to pick out River's favourite part of the holiday- trying to think of something 'normal'- and I honestly think his favourite part was chasing the maintenance van in the adventure park.

So overall, it was really lovely to have a break away, lovely to unwind a bit. BUT- everything is so much harder when you have a toddler with ASD. They just aren't interested in things other toddlers are. Things that you assume are universally enjoyed by kids- like the beach- can be a source of real distress. You can't plan 'nice activities'- as what is normally viewed as 'nice' isn't interesting. It is HARD WORK.