Friday, 30 March 2012

Funny Sort of Week- Part 2: Disappointment

Earlier this week we received the Educational Psychologist's report which was fantastic. The Ed Psych had written such an accurate account of River & since the assessment was made at home she had been able to see the 'real' River if you like. A copy was sent to the Paediatrics department ahead of our assessment today.

So our long-awaited Paeds appt finally arrived, 3 months after we were referred, & today we headed off to Musgrove. We've been trying to prepare ourselves for it over the last few days but it's been so hard to know how to prepare. Since it's quite rare to diagnose before the age of 2, we had to be prepared for them sending us away for a few months. On the flipside, there was a chance of River being diagnosed on the spot- I know a couple of people whose children were diagnosed before 2, & the Ed Psych said that she was aware that the doctor we were seeing had diagnosed another boy of a similar age to River. I'd googled the doctor & he seemed pretty good.

So- we arrived at the hospital & River was weighed & measured (being stripped of all your clothes & held down on a cold surface to be measured isn't enjoyable for anyone, & River certainly wasn't impressed by it!)
Then the doctor called us in. Except it wasn't the doctor we were told we'd see. Hmmmm, I thought.

So he asked about our concerns, & I gave him a print-out of River's autistic characteristics & discussed everything. I said that we were 100% sure he was on the spectrum. The doc listened to his heart, checked his knee reflexes & measured his head. He then told us that his weight, height & head measurements were all in sync. Great. I could tell that from looking at him.
He then said, "I see you've seen the speech therapist." "Yes, & the Ed Psych. You should have her report too," I said.
"Erm, no, it doesn't look like we do. I'm sure it'll be with us in a few days."
Bloody great. They obviously have it as we've received our copy. So the one person that really 'got' River & seems to be on our side & actually agrees with us, & the Paed hasn't even looked at her report. I'm annoyed with myself for not taking our copy- but it never crossed my mind that they wouldn't have it.

He then went on to say that he completely agrees with our concerns, & would agree that River has a significant speech delay & some behaviours that are a cause for concern. He said that there are certain assessments that they would need to do before diagnosing that River is too young for & would need to grow before they did them, & for that reason they would not diagnose until 3.

3. 3 years old. 3 bloody years old. So after initially suspecting autism at 15/16months, we'd then have to wait double that time (and then some) before a diagnosis.

This is when I got a bit emotional (I'm annoyed at myself about that too- I wanted to be calm & collected but instead was crying!) & I basically said, "I understand that you want to be sure before diagnosing, but I am sure. I have spend hours upon hours researching- not just autism, but sensory processing disorder, ADHD, development delay- and I know he's on the autistic spectrum. It is possible to diagnose before 2. Even if his development improves, it will not cancel out his autistic behaviours. Everywhere you look screams about early intervention, but when we try to get early intervention we're told to wait?? "
The doc then seemed to feel a bit bad that I was crying(!) & said something along the lines of, "It's not that I don't believe you at all, we just want to make sure that he gets the right diagnosis as there are many similar conditions like SPD, development delay. (yes, I know I'd already told him I knew about them & don't think River falls into that category) I can see that River does have major development delay (hang on, I thought you said speech delay, now you're saying major development delay?) so I will refer River to our autism specialist as autism is what she sees every day, but to diagnose we would do a joint assessment, it wouldn't just be a Paediatrician."
"Yes I know, we've also had the Ed Psych & Speech Therapist see him."
"Yes, I'll hopefully get the Ed Psych report soon."

Grrr. I knew he would need a multi-agency assessment before the diagnosis, & that's why I self-referred to speech therapy. That's also why I self-referred to Portage for the Ed Psych assessment. That is why the Ed Psych thought River may get diagnosed today- because the other assessments had already taken place.

So I asked him how long it will be before we can see the autism specialist. "At least 3-4months."
We've already waited 3 months for today's appointment! And for what? To be told that he's a healthy weight & height? Fantastic. Today, we should have seen somebody with the ability to diagnose. Instead, Tim has had a day off work and we've gone through the emotional turmoil of preparing for a diagnosis, all for nothing.

We need a diagnosis. There is help available for River without one, but having one will open a few extra doors for him. And- perhaps more importantly- a diagnosis will help Tim & I accept it, realise it's not all in our heads, realise that the way he is is down to genetics & not our parenting, & can get our sadness out of the way & focus on the positives. Whereas now, we're having to focus on the negatives all the time to 'prove' that River is autistic when we're desperate to focus on the positives & show everyone how amazing River is. Xx

Tuesday, 27 March 2012

Funny Sort of Week- Part 1

This was always going to be a funny sort of week & a bit of an emotional one, as Monday & Tuesday was due to be the Brainwave assessment & Friday is the long-awaited paediatrician assessment.
Our two days at Brainwave were supposed to be 9:30-4:30, but River naps 1:30-3:30pm (closer to 2-4pm since the clock change) & will only nap at home in cot in blacked out room. The therapists seemed a bit thrown by this, although I did mention it when booking the assessment & I'm pretty sure most toddlers River's age still have a long nap after lunch. They initially wanted us to come back for 4pm to discuss their findings from the assessment but later agreed it would make more sense for them to visit us so that River's routine isn't disrupted.

So the day started with taking a history of River & discussing his strengths & weaknesses. River wasn't really interested in any of the toys in the room & there wasn't space for him to run around so he started to get agitated, so he got through the next hour with constant snacks (food is the only thing that will distract him when in an enclosed space with nothing to spin!) We then had a break whilst the therapists chatted about River & River ran around outside.

We then all went into one of their large therapy rooms, & this is where River went downhill. There were lots of toys & bright things but River wasn't interested in any of them. The therapists wanted to try out a few physical exercises with River, but he just wanted to cling onto me or Tim the whole time. I found a couple of wooden shapes that were like CDs, & he briefly was happy to focus on spinning them. However, after around a minute of that he was then standing by the floor-to-ceiling windows crying to get out. When I tried to pick him up he just climbed up me & pulled my hair, he was so overwhelmed & panicked.

It was quite obvious that River wasn't going to co-operate with any of the exercises they wanted to try out on him, so we moved into the sensory room. River LOVED their sensory room, he did on our initial visit too. The lights are turned off, the floors & walls are padded & there is a large colour-changing bubble tube in the corner that River was transfixed by. He went very quiet & kept his face very close to the bubble tube for ages, which gave us time to chat to the therapists. There was also a little bit of space for him to run up & down & 'stim' (arm-flap, open & close fists) which helped.
After maybe 30mins, he got frustrated & anxious again. So out came the food again which calmed him- so by 12:30 he'd had a bowl of cereal, about 10 grapes, a large apple, a banana & 2 rounds of tuna sandwiches! By around 1:15 he'd had enough so we took him home for his nap. God knows how he'd have coped if we'd attempted the whole day!!

The therapists then came to our house an hour or two later to discuss their conclusions & talk us through River's 30-minute-a-day programme. They felt that it is his sensory issues rather than any possible autism that needs working on. They explained that one of the main reasons for all the running he does is because he has a lack of awareness of where his body is in space, so there are lots of exercises to increase his body awareness like body brushing & joint compressions that they hope will help with that. There are also exercises designed to stop him toe-walking (although he only walks/runs on his toes when he's excited) & some object recognition exercises.
We were due to go back the following day to be taught the various exercises but unfortunately one of the therapists had another appt & the other wasn't feeling very well, so they are coming round for a home visit next week instead- which will actually be much better for River as he really didn't tolerate being at the centre.

Only time will tell if the programme will make a difference to our little River. There is a lot more emphasis on his physical behaviours & physical exercises than we expected, & not a huge amount of focus on his social & communication needs which we feel is what we should be focusing on, but I think Brainwave's theory is that by dealing with his sensory issues we can then focus on all the other stuff. I guess we have nothing to lose & everything to gain at this point so we'll give it everything we've got & keep our fingers crossed.

Wednesday, 14 March 2012

A wizard in a Muggle's world

Today we had the Educational Psychologist visit us at home. She was really lovely, & asked lots of questions whilst observing River. River spent most of the time standing by the window, looking outside. He also looked out of the corner of his eye at the living room lights a lot, then spent a while spinning some cake boards over & over again. He ignored us when we called his name repeatedly. At one point, he managed to pull a pile of video cassettes on top of himself & burst into tears, so I picked him up & cuddled him- & he just pulled away & was desperate to get away from me, getting no comfort whatsoever from me. This is typical of River, so it was quite convenient that it happened in front of the Ed Psych. We then put on some Thomas, & River immediately ran up & down the room on tiptoes, flapping his arms & clenching his fists.

She talked quite a lot about Aspie's (Asperger's) & high-functioning autism, so I got the impression that she agrees that River's on the spectrum. She described Aspie's as "wizards in a muggle's world- very clever, but just not understood by the rest of the world" which I thought was such a lovely analogy.

I said that I was concerned the paediatrician may say that River's too young for a diagnosis, or disagree that he's on the spectrum because he makes very good eye contact but the Ed Psych said she'd seen young children diagnosed who were very similar to River. Also, if we're unhappy with the paeds decision she will help us get seen by a different one who may be more experienced with very young children.

It was sooo lovely to have somebody agree with me, & talk about the help available long & short term, but at the same time it always leaves me with a heavy heart as I still desperately want to be proven wrong- although really, I know that won't happen :-(

So she's sending her report to the paed, health visitor, GP, & a copy to us.

GREAT NEWS: We're on the waiting list for the Brainwave programme ( & were looking at July before a slot was free- however, they've had a cancellation & we're now having our two-day assessment in TWO WEEKS!! Can't wait x

Tuesday, 13 March 2012

Speech & language assessment, 20 months

Well River had his speech & language assessment yesterday. The therapist was really nice & asked lots of questions, tried to play a couple of games with River & said she could see what our concerns were.
However, she did say that it is very rare for them to see under 2's, they change & develop so much around this age & that she thinks we'll be hearing that from a lot of the specialists.
She thought it was great that he made really good eye contact with her & was happy to allow her to tickle him. She asked if he tries to copy any of the noises we make- I said that in the last couple of weeks he has started saying, "Baaa baaa baaa" when we sing Old McDonald. She said it definitely sounds like he's progressing, just slower than most. What I should have told her but didn't think about it properly was that he hasn't said, "Baaa baaa baaa" for 2 or 3 days now, despite me singing it lots.
Despite her reassurances, he was still displaying lots of 'autistic' traits. He refused to leave my lap most of the time- every time she talked to him or showed him a game he just stared at her then kept trying to climb up me in a panic. He refused to play with any of the toys, but instead wanted to stare out of the window out of the corner of his eye. He then found his snack pot in my bag & spun it repeatedly. 
She said that all the suggestions she has for us are things we're already doing- simplifying everything ie "River, more? More? More toast?" instead of "Would you like some more toast now?" & using Makaton signs every single time, She also thought it was a good idea to have simple photos of his favourite/most common things in an album so he can eventually use them as a waterer-down version of PECS. 
She's also referring us to Occupational Therapy which I'm really pleased about. 
Tim & I both agree that River is showing more & more autistic traits on an almost daily basis which makes us sad :(
Ed Psych appt is tomorrow & Paeds is at the end of the month so we shall see what they say.

Development assessment at 18 months

When River was 18 months old he had a development assessment with the health visitor. We were really hoping that he would show some delays in the tests so that we'd realise it wasn't all in our heads, but at the same time were desperate for the health visitor to say, "You're wrong- there is nothing wrong with your child."
However, he scored much worse than we expected. She tested him in 7 different areas, & he scored advanced in 1 of them (locomotor- as he can run on tiptoes) but was very delayed in the other 6, scoring 12 months in 2 of them, 6 months in 2 of them & 3 months in 2 of them.
It was devastating & came as a real blow- I thought he might be at around 12 months, but to scored 6 months & 3 months on some of the tests when he was 18 months was a real shock. On the flipside, it was such a relief that we'd finally be taken seriously.
The health visitor said she would like to carry out a repeat assessment in 3 months' time at home, & agreed to refer him for hearing & eyesight checks.

River, 18 months

By 18 months, I had (sort of) gotten over the shock of it all & was in Proactive Pushy Mum Mode:

"Well it's been just over a month since my last journal voicing my concerns that River was probably on the Autistic Spectrum- although it feels like a lot longer ago than that.
I managed to get our GP to refer us to the Paediatrician, who have a waiting list but have given us an appointment for the end of March. I'm really pleased, as some paeds refuse to assess a child for autism until the age of 2 or 3!
We are seeing our health visitor on Friday who is going to do a SOGS- don't really know what that means but think she will assess where he is on his milestones by attempting to read a book to him, stack blocks with him etc (he will ignore her during these, I'm sure of it!) then refer him to to MAISEY- so that an occupational therapist, pyschologist etc will all assess him separately then have a meeting to decide on his diagnosis.
I asked the health visitor if we could have a referral to a speech & language therapist, but she said they usually won't see a child before 2 & a quarter. I expained that I could understand if he had another way of communicating with me like pointing etc but because of all his other autistic traits, he has no way of communicating his needs. She said she'd see what she could do.
HOWEVER- I then discovered online that you can self-refer for speech therapy! So I emailed them a referral form & received a letter this weekend saying our referral was successful & they will be sending us an appointment shortly to assess him!!! Very good news, although it's just so typical that nobody offers you this information- you have to spend hours researching to find it."

River, 17 months

This is from when River was 17 months & it sunk in that everything lead towards ASD:

"I can barely bring myself to type it, let alone say it out loud. My beautiful, perfect baby boy more than likely has autism. I keep hoping I'm wrong, hoping I'm just being an overreacting mum but I know that's not the case.
In the last few months it's become more & more apparent that River isn't the same as his peers. The other toddlers will interact with each other- or at least look & stare at each other. Other toddlers will smile at people, & show them their toy, but River's never brought one of his toys to me or instigated any sort of interaction. That's ok, I thought- he's just not a people person.
Then all of his friends started talking, saying their first words, & River said nothing. That's ok, I thought. He's just a late talker. Boys talk later than girls. No need to worry until he's at least 2.
But he doesn't point at things. He doesn't clap. He doesn't wave. He doesn't look at what I'm pointing at. He doesn't smile at people. Doesn't do any imaginary play. He spends most of his day running up & down the living room, watching the TV. He hates noisy places like toddler groups. He doesn't understand basic things like, "Where is the light?" "Where are the nappies?" He is obsessed with spinning anything & everything.
He doesn't kiss me. He's never kissed me Cry
I'm just devastated. I know it'll be a long road to a diagnosis but I just know he's autistic. I keep wondering what the future will hold for him. We live in the village that my OH grew up in & have been so excited about River attending the same primary school that my OH once did- will that ever happen now? Will he ever experience love? It's just too much. Xx"

River, 15 months

Here is a diary insert from when River was 15 months, before I'd considered autism, & thought I was failing at being a mum:

"I didn't know which friend to talk to or where to write this, so thought I'd write a journal.
River is now nearly 15 months & is getting more interesting every single day, often giggling to himself or stomping around babbling at the top of his voice. I love him so, so much but can't help feel like I'm failing him. I desperately want to teach him new skills & help his development but really struggle to know how. I'd love to read him stories, but whenever I try he just grabs the book, closes it & throws it, or spins it on the floor, or tries to eat it. I try to teach him to clap, & he'll clap my hands together for 2 seconds before walking away. He won't point or wave. I try to teach him to push things through his shape sorter, but he just wants to spin the shapes on the floor. I show him how to push buttons or push his spinning top to make it work- but he'd rather pick them up & shake them.
He just gets bored of anything sooo soooo quickly, & I don't know how to keep his attention for more than 2 minutes. He loves being tickled, but that lasts all of 5 minutes. He refuses to colour- just wants to spin the felt tips on the floor. We try playdoh- he eats it (even the disgusting homemade salty stuff.)
The only thing that keeps him amused is the tv, & I feel so guilty relying on it all the time :("

From the beginning...

A clever friend of mine recently suggested I start a blog about our amazingly gorgeous little boy, River, who is currently undergoing assessments for ASD (Autism Spectrum Disorder.) He is only 20 months & was only 15 months when we first had our suspicions, so I'd had to be quite pushy to get heard, but I'm convinced he is on the spectrum & won't stop pushing until every possible assessment has been done.

I have written a sort-of diary elsewhere so I'll import these into this blog soon, but for now, here is why we believe River is on the spectrum:

·         Cannot point
·         Cannot wave
·         Cannot clap
·         No words or animal noises
·         Cannot follow a point
·         No interest in other children or people
·         No imaginary play ie pretending to use a phone, pouring a cup of tea
·         Doesn’t smile when smiled at
·         Doesn’t answer to his name- but hears when you whisper ‘milk’ or ‘banana’
·         Obsessed with spinning toys, wheels, phones, blocks- everything
·         Doesn’t play with toys for intended purpose- just spins & flicks them
·         Doesn’t bring/show me toys to include me in his world
·         Has never kissed me or really cuddled me
·         Grinds/humps against muslins in his cot for prolonged periods with deadpan expression & glazed eyes
·         Hates noisy, unfamiliar places ie toddler groups, family parties
·         Doesn’t understand basics ie “Bring me a nappy,” or “Where’s your drink?”
·         Very sensitive to routine
·         Runs up & down living room all day whilst opening & closing fist (stimming)
·         Flaps his arms
·         Like to spin in circles
·         Likes to shake head
·         Walks on tip toes when excited
·         Stares into space & giggles a lot
·         Wanders around the house aimlessly
·         Likes to look at things upside down or side-on
·         Loves the washing machine, especially spin cycle
·         Doesn’t communicate his needs
·         Pokes & prods his eyes
·         Likes to face the corner of the room
·         Stares at lights out of the corner of his eye
·         Likes the CD spinning in the CD player
·         Spins things on the floor then leans right into them to gain visual stimulation
·         Likes to bite/lick the tv remote, freezer door, wooden stairgate- hard things in general
·         Finds visual communication easier- won’t attempt to point at tv or indicate vocally when he wants it on, but would rather climb up, get the remote & drop it next to me
·         Cannot make marks on paper with a pen or felt tip
·         Will not look at books
·         Buries his head in corner of the couch a lot (compression?)
·         Has to test how food & objects react against different surfaces ie will put raisins on the living room floor, flick them, then pick up & put on kitchen floor, then on the stairs, then on the armchair
·         Will not feed himself with a spoon, & will not let us feed him- has finger fed himself from 9 months
·         Doesn’t get any comfort if we cuddle him in the night if he wakes- it’s as if we’re a stranger
·         Likes to have lots of musical toys on at the same time
·         Likes to shout
·         All bowls & containers have to be emptied
·         Likes to run/crash into furniture
·         Struggles to transition from one thing to another-ie having a bath