I just wanted to share this very powerful & moving YouTube video that has really touched Tim & I. Please watch, and even share on Facebook if you're feeling extra lovely to help raise awareness. Thank you x
Friday, 18 May 2012
YouTube video
I just wanted to share this very powerful & moving YouTube video that has really touched Tim & I. Please watch, and even share on Facebook if you're feeling extra lovely to help raise awareness. Thank you x
Tuesday, 15 May 2012
Timeline of appointments
This is for our benefit more than anyone else's, but I'm always getting muddled about when I first enquired about this, or when our first appointment was for that, so I just need to write a list of when things have happened.
Dec 2011- Asked GP for referral to Paediatrics
Jan 2012- Letter from hospital explaining the waiting list is around 11 weeks
Jan - Told by Heath Visitor that speech therapy was unlikely at such a young age
20 Jan - Self-referred for speech therapy & occupational therapy
3 Feb - Health Visitor did SOGS test confirming River is developmentally delayed, agreed to refer for hearing test
24 Feb - Applied for Disability Living Allowance with help from Cerebra
27 Feb- Appointment for a speech therapy is offered
9 March- chased hearing test with hospital, they'd never received a referral! Called Health Visitor & asked her to please refer him.
12 March-Speech Therapy assessment
14 March- Portage home visit by Educational Psychologist
19 March- received Speech Therapy report
23 March- still no news on hearing test so chased again & was offered an appointment
26 March- received Ed Psych report
23 March- letter from DLA explaining they've requested a report from our GP
30 March- Paediatric assessment at hospital- although when we arrived, we were only seen by a registrar. He didn't have a copy of the Ed Psych report. He agreed to refer us to the autism specialist.
4 April- Health Visitor repeated his SOGS test at home
6 April- received paediatric appointment through as the registrar had promised- but instead of being with the autism specialist, it was with another registrar for September.
11 April- Appointment with GP, expressed unhappiness at being fobbed off with another registrar appointment. She agreed to refer us & ask for either the autism specialist or another Dr experienced in autism, NOT a registrar
25 April- Call from DLA requesting the Ed Psych report. Emailed it to them.
27 April- received Paediatric report
May- still not heard about paediatric assessment so called hospital & was offered an appointment with another doctor very experienced in autism for July
2 May- letter from DLA apologising for delay
8 May- received an appointment for the main autism specialist in June
8 May- Family Support Worker round to apply for 2yr old pre-school funding for River
9 May- Senior Portage Worker visit
14 May- received letter confirming our application for DLA was successful.
14 May- Family Support Worker called, application for 2yr old pre-school funding was successful.
14 May- Speech Therapy & Occupational Therapy home visits
16 May (tomorrow)- Hearing test at hospital
16 May- Nursery nurse from Health Visiting team home visit
17 May- Occupational Therapy home visit
19 June- Paediatric assessment with autism specialist
13 July- Paediatric assessment with Dr experienced in autism
Dec 2011- Asked GP for referral to Paediatrics
Jan 2012- Letter from hospital explaining the waiting list is around 11 weeks
Jan - Told by Heath Visitor that speech therapy was unlikely at such a young age
20 Jan - Self-referred for speech therapy & occupational therapy
3 Feb - Health Visitor did SOGS test confirming River is developmentally delayed, agreed to refer for hearing test
24 Feb - Applied for Disability Living Allowance with help from Cerebra
27 Feb- Appointment for a speech therapy is offered
9 March- chased hearing test with hospital, they'd never received a referral! Called Health Visitor & asked her to please refer him.
12 March-Speech Therapy assessment
14 March- Portage home visit by Educational Psychologist
19 March- received Speech Therapy report
23 March- still no news on hearing test so chased again & was offered an appointment
26 March- received Ed Psych report
23 March- letter from DLA explaining they've requested a report from our GP
30 March- Paediatric assessment at hospital- although when we arrived, we were only seen by a registrar. He didn't have a copy of the Ed Psych report. He agreed to refer us to the autism specialist.
4 April- Health Visitor repeated his SOGS test at home
6 April- received paediatric appointment through as the registrar had promised- but instead of being with the autism specialist, it was with another registrar for September.
11 April- Appointment with GP, expressed unhappiness at being fobbed off with another registrar appointment. She agreed to refer us & ask for either the autism specialist or another Dr experienced in autism, NOT a registrar
25 April- Call from DLA requesting the Ed Psych report. Emailed it to them.
27 April- received Paediatric report
May- still not heard about paediatric assessment so called hospital & was offered an appointment with another doctor very experienced in autism for July
2 May- letter from DLA apologising for delay
8 May- received an appointment for the main autism specialist in June
8 May- Family Support Worker round to apply for 2yr old pre-school funding for River
9 May- Senior Portage Worker visit
14 May- received letter confirming our application for DLA was successful.
14 May- Family Support Worker called, application for 2yr old pre-school funding was successful.
14 May- Speech Therapy & Occupational Therapy home visits
16 May (tomorrow)- Hearing test at hospital
16 May- Nursery nurse from Health Visiting team home visit
17 May- Occupational Therapy home visit
19 June- Paediatric assessment with autism specialist
13 July- Paediatric assessment with Dr experienced in autism
Thursday, 10 May 2012
Exploding head.
Well as the title suggests, my head is literally about to explode.
There is just so much to think about constantly, which is so unbelievably draining. Constantly things to help with River's sensory issues, to help him understand the world, and to help him communicate.
I no longer talk in proper sentences. "River, look! Look! Car. Ooooo, car. Car goes brum brum! Car goes brum brum! River, eat breadstick? Breadstick? River, eat? Ta. Ta. River, clean hands? Clean hands? 1,2,3...clean clean clean! More? More? 1,2,3...clean clean clean!!"
For god's sake, I'm driving myself barmy. You see, children with ASD don't do well with big sentences. They don't know which words to focus on- so if I said, "River, would you like a breadstick to eat?" he would switch off & not pay attention as it's too muddling. So sentences are shortened to one or two words. And they are repeated two or three times to try to imprint the word in his brain. Then there is signing. As River doesn't speak & doesn't understand much speech, we do Makaton signing to give him a visual cue. So instead of just giving him another breadstick, I will say & sign, "More?" a couple of times, then get his hands & attempt to make him sign it before giving him the breadstick.
Then there is the constant preparation for what's about to happen next. Children with ASD struggle to transition from one thing to another, so getting in the car & going to the supermarket or a friends' house might not be a big deal to most children but for children like River, it's a major cause for anxiety. Suddenly they are plucked from the world that they are comfortable in- lots of things to spin, no noise etc- and plunged into a new scenario with bright lights, noises, unfamiliar people, nothing to spin- and nothing makes sense to them any more! Sooooo- we help this by trying to prepare River as much as we can. For instance, the past few weeks have been horrendous at bathtime. River will happily stand in the bath but refuses to sit down. He will flick the surface of the water but refuse to pick up a toy from the bottom of the bath & scream with frustration. As soon as his body gets wet, he screams. God forbid if you try to wash his hair. He uses my hair as rope and attempts to climb out of the bath by hanging off it. Ouch.
So we tried a new tactic this week. The bath was much shallower to start. Instead of pouring water over him, I used a sponge. I said, "Wash arm? Wash arm? 1,2,3...wash wash wash!!" and timed washing his arm with my speech. He actually smiled! After washing him I said, "River, sit down? Sit down? 1,2,3-" & scooped up his legs- "Down!! Yeah!!" He stayed seated for about 10 seconds then jumped up again. But no tears! Vast improvement!
We will also (when River's a little older) use photos in prepare River- photos of pre-school before he goes, photos of the supermarket before we go, photos of friends before they come round.
We are in the middle of making a photo book. This will basically be a simple photo album with photos of familiar things- cot, mummy, daddy, beaker, raisins. The plan is that River will get used to these words & what they mean, & I will then use the photos alongside the real object- so when he wants a drink I will show him the photo of the drink. Then eventually, he will learn to bring me the photo of the beaker when he wants a drink.
There's also objects of reference. This is when an object is used to request something. River is picking this up well which is great. For instance, if he wants the tv turned over he will bring me the remote. If he wants bubbles, he will bring me a pot of bubbles. And even if we're right in the middle of something, we act on his request, as it's so vitally important that he understands that if he communicates with us, his needs will be met.
Then there are his sensory issues. River has real sensory aversion to certain textures- he won't touch pasta, jelly, finger paints or many types of messy play. So we try to do as much messy/sensory play as possible. Things like sand, shaving foam, finger paints, liquid starch & glue, cornflour & water, cotton wool. He also walks on tiptoes a lot so we try to get him to walk on different textures.
We try to make homemade sensory stuff as sensory toys from specialist companies cost an absolute bomb. So yesterday I got some balloons & filled them with various things like rice, flour, cous cous, hair gel, dry pasta etc to give sensory input. Also, River doesn't have very good fine motor skills & so struggles to turn the pages of board books, so we've adapted them by putting small rubber kitchen drawer stoppers on the corners so that he can turn them easier.
I feel very fortunate that we have so many people involved in helping River already. So far, we have: paediatrician, educational psychologist, speech & language therapist, occupational therapist, senior Portage worker, family support worker, and a nursery nurse from the health visiting team. And that's all before River is 2!! Sooo many people elsewhere in the country are struggling to see anyone other than their health visitor or GP.
Has this post made your head spin a bit? Maybe found it a bit boring? I am not surprised, as that's exactly how I feel about it every day. Of course I'm not bored of helping River, but I'm so bored of constantly thinking about everything I'm doing all of the time, wondering what else I should be doing, what other games I can think of that will help River progress.
Right, I'm off to take some headache tablets and get River up from his nap.
There is just so much to think about constantly, which is so unbelievably draining. Constantly things to help with River's sensory issues, to help him understand the world, and to help him communicate.
I no longer talk in proper sentences. "River, look! Look! Car. Ooooo, car. Car goes brum brum! Car goes brum brum! River, eat breadstick? Breadstick? River, eat? Ta. Ta. River, clean hands? Clean hands? 1,2,3...clean clean clean! More? More? 1,2,3...clean clean clean!!"
For god's sake, I'm driving myself barmy. You see, children with ASD don't do well with big sentences. They don't know which words to focus on- so if I said, "River, would you like a breadstick to eat?" he would switch off & not pay attention as it's too muddling. So sentences are shortened to one or two words. And they are repeated two or three times to try to imprint the word in his brain. Then there is signing. As River doesn't speak & doesn't understand much speech, we do Makaton signing to give him a visual cue. So instead of just giving him another breadstick, I will say & sign, "More?" a couple of times, then get his hands & attempt to make him sign it before giving him the breadstick.
Then there is the constant preparation for what's about to happen next. Children with ASD struggle to transition from one thing to another, so getting in the car & going to the supermarket or a friends' house might not be a big deal to most children but for children like River, it's a major cause for anxiety. Suddenly they are plucked from the world that they are comfortable in- lots of things to spin, no noise etc- and plunged into a new scenario with bright lights, noises, unfamiliar people, nothing to spin- and nothing makes sense to them any more! Sooooo- we help this by trying to prepare River as much as we can. For instance, the past few weeks have been horrendous at bathtime. River will happily stand in the bath but refuses to sit down. He will flick the surface of the water but refuse to pick up a toy from the bottom of the bath & scream with frustration. As soon as his body gets wet, he screams. God forbid if you try to wash his hair. He uses my hair as rope and attempts to climb out of the bath by hanging off it. Ouch.
So we tried a new tactic this week. The bath was much shallower to start. Instead of pouring water over him, I used a sponge. I said, "Wash arm? Wash arm? 1,2,3...wash wash wash!!" and timed washing his arm with my speech. He actually smiled! After washing him I said, "River, sit down? Sit down? 1,2,3-" & scooped up his legs- "Down!! Yeah!!" He stayed seated for about 10 seconds then jumped up again. But no tears! Vast improvement!
We will also (when River's a little older) use photos in prepare River- photos of pre-school before he goes, photos of the supermarket before we go, photos of friends before they come round.
We are in the middle of making a photo book. This will basically be a simple photo album with photos of familiar things- cot, mummy, daddy, beaker, raisins. The plan is that River will get used to these words & what they mean, & I will then use the photos alongside the real object- so when he wants a drink I will show him the photo of the drink. Then eventually, he will learn to bring me the photo of the beaker when he wants a drink.
There's also objects of reference. This is when an object is used to request something. River is picking this up well which is great. For instance, if he wants the tv turned over he will bring me the remote. If he wants bubbles, he will bring me a pot of bubbles. And even if we're right in the middle of something, we act on his request, as it's so vitally important that he understands that if he communicates with us, his needs will be met.
Then there are his sensory issues. River has real sensory aversion to certain textures- he won't touch pasta, jelly, finger paints or many types of messy play. So we try to do as much messy/sensory play as possible. Things like sand, shaving foam, finger paints, liquid starch & glue, cornflour & water, cotton wool. He also walks on tiptoes a lot so we try to get him to walk on different textures.
We try to make homemade sensory stuff as sensory toys from specialist companies cost an absolute bomb. So yesterday I got some balloons & filled them with various things like rice, flour, cous cous, hair gel, dry pasta etc to give sensory input. Also, River doesn't have very good fine motor skills & so struggles to turn the pages of board books, so we've adapted them by putting small rubber kitchen drawer stoppers on the corners so that he can turn them easier.
I feel very fortunate that we have so many people involved in helping River already. So far, we have: paediatrician, educational psychologist, speech & language therapist, occupational therapist, senior Portage worker, family support worker, and a nursery nurse from the health visiting team. And that's all before River is 2!! Sooo many people elsewhere in the country are struggling to see anyone other than their health visitor or GP.
Has this post made your head spin a bit? Maybe found it a bit boring? I am not surprised, as that's exactly how I feel about it every day. Of course I'm not bored of helping River, but I'm so bored of constantly thinking about everything I'm doing all of the time, wondering what else I should be doing, what other games I can think of that will help River progress.
Right, I'm off to take some headache tablets and get River up from his nap.
Thursday, 19 April 2012
Feeling blue
Tonight, there is a programme on BBC2 about autism. I think it's important for us to watch it (me in particular, I think Tim might find it upsetting) & I think it's great to raise awareness of autism. But I've just watched 3 clips of it on the BBC website & feel really sad.
Some of the teenagers featured have severe autism and are non-verbal. I am sooo sooo desperate for River to be able to talk. If someone told me River won't talk until he's 4, that's fine. I could cope with that. But not knowing if he'll ever talk is such a massive fear for me. I know there are so many parents whose autistic kids are non-verbal & cope brilliantly, but to me it just feels awful. The one bit of speech River did have- "baa baa baa" - he's now lost.
In every article I've read, when asked whether they'd change their child they always say no. "If someone told me they could take away my child's autism, I wouldn't want them to. It's part of who they are."
But I would. Don't get me wrong, I love River's quirks & personality and love him for who he is but I feel so sad that he is going to face certain struggles that others won't, & will be judged by people. I don't want him to be a social butterfly, but I don't want him to be scared of people & distressed by the mere presence of other people. And I don't expect him to enjoy every minute of life- who does?- but I don't want the world to be a confusing & scary place for him. Does that make me a bad mother? I feel so bad that I want to 'change' something about him.
Another thing that I feel terribly guilty about is when I look at him, I see autism. It's the first thing I see. And it's constant. Everyone says to me, "He's still your wonderful little boy" & "Don't forgot to enjoy him just for being River." And I so desperately wish I could.
It starts as soon as I see him in the morning. I open his bedroom door & say, "Hello River! Hello!" whilst waving (in an attempt to teach him to wave!) & he just stares into space, as if he hasn't heard me or seen me. That's because he's autistic, I think. I pick him up, he still hasn't even looked at me or acknowledged me- that's because he's autistic, I think. I attempt to take him downstairs, but if I try to walk past my bedroom he screams. He HAS to sit on my bed & watch a Thomas DVD before he can face going downstairs. That's because he's autistic. Whilst watching the DVD, he cimbs off the bed & runs up & down our bedroom flapping his arms. That's because he's autistic. We eventually make it downstairs & I give him some toast on a plate. He upturns the plate & spins it. That's because he's autistic. He carries the toast, handful at a time, & places it in a pile on the Examining Chair (armchair.) That's because he's autistic. He then eventually eats the toast, whilst staring out the window out of the corner of his eye. That's because he's autistic.
And this is all before our day has started.
I desperately want to think, "That's because he's River. It's just what River does." But I can't. Autism is always there first. Will my mindset better over time? Will it get better once we've got a diagnosis & can move on? Or am I a bad mother & am always going to think like this?
Who bloody knows.
And it's raining today.
Some of the teenagers featured have severe autism and are non-verbal. I am sooo sooo desperate for River to be able to talk. If someone told me River won't talk until he's 4, that's fine. I could cope with that. But not knowing if he'll ever talk is such a massive fear for me. I know there are so many parents whose autistic kids are non-verbal & cope brilliantly, but to me it just feels awful. The one bit of speech River did have- "baa baa baa" - he's now lost.
In every article I've read, when asked whether they'd change their child they always say no. "If someone told me they could take away my child's autism, I wouldn't want them to. It's part of who they are."
But I would. Don't get me wrong, I love River's quirks & personality and love him for who he is but I feel so sad that he is going to face certain struggles that others won't, & will be judged by people. I don't want him to be a social butterfly, but I don't want him to be scared of people & distressed by the mere presence of other people. And I don't expect him to enjoy every minute of life- who does?- but I don't want the world to be a confusing & scary place for him. Does that make me a bad mother? I feel so bad that I want to 'change' something about him.
Another thing that I feel terribly guilty about is when I look at him, I see autism. It's the first thing I see. And it's constant. Everyone says to me, "He's still your wonderful little boy" & "Don't forgot to enjoy him just for being River." And I so desperately wish I could.
It starts as soon as I see him in the morning. I open his bedroom door & say, "Hello River! Hello!" whilst waving (in an attempt to teach him to wave!) & he just stares into space, as if he hasn't heard me or seen me. That's because he's autistic, I think. I pick him up, he still hasn't even looked at me or acknowledged me- that's because he's autistic, I think. I attempt to take him downstairs, but if I try to walk past my bedroom he screams. He HAS to sit on my bed & watch a Thomas DVD before he can face going downstairs. That's because he's autistic. Whilst watching the DVD, he cimbs off the bed & runs up & down our bedroom flapping his arms. That's because he's autistic. We eventually make it downstairs & I give him some toast on a plate. He upturns the plate & spins it. That's because he's autistic. He carries the toast, handful at a time, & places it in a pile on the Examining Chair (armchair.) That's because he's autistic. He then eventually eats the toast, whilst staring out the window out of the corner of his eye. That's because he's autistic.
And this is all before our day has started.
I desperately want to think, "That's because he's River. It's just what River does." But I can't. Autism is always there first. Will my mindset better over time? Will it get better once we've got a diagnosis & can move on? Or am I a bad mother & am always going to think like this?
Who bloody knows.
And it's raining today.
Wednesday, 18 April 2012
A magical moment
The most amazing thing happened yesterday. River kissed me for the first time.
I've waited 21 months to have those cute little lips lean in for a kiss and yesterday morning, when I asked "Mummy kiss?" he looked at my mouth and placed those lips on mine.
At risk of sounding melodramatic, it was honestly one of the best moments of my life.
I've waited 21 months to have those cute little lips lean in for a kiss and yesterday morning, when I asked "Mummy kiss?" he looked at my mouth and placed those lips on mine.
At risk of sounding melodramatic, it was honestly one of the best moments of my life.
Tuesday, 17 April 2012
Plodding along
So I don't have much to say, but fancied writing about the day-to-day stuff.
We've had a few small breakthroughs in the last couple of weeks- first off, River has been looking at books! I was starting to think he'd never want to look at books but then out of the blue he brought one over to me & wanted me to hold it whilst he turned the pages. He wasn't interested in me reading it, but it's still a big deal to us! He's also starting to remember/understand a few more words. This weekend, I said,"River-raspberry? Raspberry?" and he leaned into me for me to blow a raspberry on his neck! All the constant repetition is paying off. Also, when we sing & sign "The Wheels on the Bus" (we do this twice a day, before naptime & bedtime) and sing "the wipers on the bus go..." "the doors on the bus go...." etc, he will move our hands so that we do the correct signing, which is great!
The things that aren't so good- the one sound that River had been making was, "baaa baaa baaa" during Old MacDonald. He had been doing this for about two weeks, but hasn't done it for maybe a month/six weeks now. Losing or regressing in speech is not a good sign. Also, whenever anyone comes into the house-whether it be a stranger or a familiar friend- River cries and runs to the conservatory door & takes ages to calm down. He also gets very, very upset if another toddler plays with certain toys or makes certain noises.
He's also showing more ritualistic behaviour- he likes to 'gather' similar objects, so he will unstack his stacking boxes and move them one by one onto the armchair, then throw them off again, then get three matching tupperware lids & spin them repeatedly, then 'gather' them onto the armchair. He still refuses to sit at the table or keep any food in a bowl/plate- if he's at the table, he goes crazy as he needs to 'examine' the food on his armchair. If I put a bowl/plate of food ie toast, raisins etc on the living room floor, the food is instantly emptied out, the bowl is spun on the floor, & food is scooped up and he runs with it to the armchair, where he gathers it into a pile & then eats it.
A bit about the armchair- we've nicknamed it River's Examining Chair, as everything- new toys, food, everything- gets taken to the armchair to be inspected and examined. We try to discourage people from sitting on this armchair, as a)it's River's safe space, and b)It's constantly covered in crushed breadsticks, toast crumbs, and the odd raisin. Gross.
I've also been researching the link between food & autism- there are lots of success stories online about the GF/CF Diet (Gluten Free & Casein Free.) Apparently people with autism are effected by these food groups, & there are many people who claim that after cutting out pasta, oats, bread, wheat cereal, milk, butter, cheese, whey, lactose etc- that suddenly their child could talk for the first time, stopped stimming (flapping arms) pointed, waved. So part of me thinks- if there's a chance of it helping River, shouldn't I give it a go??
But there are others who say it's had no effect. The NAS website says that research shows the most effective cases are the ones where the children have problems with their bowels (it's very common for children with autism to have regular constipation or diarrhoea) which isn't something River has ever suffered with badly.
That's about it for now.
We've had a few small breakthroughs in the last couple of weeks- first off, River has been looking at books! I was starting to think he'd never want to look at books but then out of the blue he brought one over to me & wanted me to hold it whilst he turned the pages. He wasn't interested in me reading it, but it's still a big deal to us! He's also starting to remember/understand a few more words. This weekend, I said,"River-raspberry? Raspberry?" and he leaned into me for me to blow a raspberry on his neck! All the constant repetition is paying off. Also, when we sing & sign "The Wheels on the Bus" (we do this twice a day, before naptime & bedtime) and sing "the wipers on the bus go..." "the doors on the bus go...." etc, he will move our hands so that we do the correct signing, which is great!
The things that aren't so good- the one sound that River had been making was, "baaa baaa baaa" during Old MacDonald. He had been doing this for about two weeks, but hasn't done it for maybe a month/six weeks now. Losing or regressing in speech is not a good sign. Also, whenever anyone comes into the house-whether it be a stranger or a familiar friend- River cries and runs to the conservatory door & takes ages to calm down. He also gets very, very upset if another toddler plays with certain toys or makes certain noises.
He's also showing more ritualistic behaviour- he likes to 'gather' similar objects, so he will unstack his stacking boxes and move them one by one onto the armchair, then throw them off again, then get three matching tupperware lids & spin them repeatedly, then 'gather' them onto the armchair. He still refuses to sit at the table or keep any food in a bowl/plate- if he's at the table, he goes crazy as he needs to 'examine' the food on his armchair. If I put a bowl/plate of food ie toast, raisins etc on the living room floor, the food is instantly emptied out, the bowl is spun on the floor, & food is scooped up and he runs with it to the armchair, where he gathers it into a pile & then eats it.
A bit about the armchair- we've nicknamed it River's Examining Chair, as everything- new toys, food, everything- gets taken to the armchair to be inspected and examined. We try to discourage people from sitting on this armchair, as a)it's River's safe space, and b)It's constantly covered in crushed breadsticks, toast crumbs, and the odd raisin. Gross.
I've also been researching the link between food & autism- there are lots of success stories online about the GF/CF Diet (Gluten Free & Casein Free.) Apparently people with autism are effected by these food groups, & there are many people who claim that after cutting out pasta, oats, bread, wheat cereal, milk, butter, cheese, whey, lactose etc- that suddenly their child could talk for the first time, stopped stimming (flapping arms) pointed, waved. So part of me thinks- if there's a chance of it helping River, shouldn't I give it a go??
But there are others who say it's had no effect. The NAS website says that research shows the most effective cases are the ones where the children have problems with their bowels (it's very common for children with autism to have regular constipation or diarrhoea) which isn't something River has ever suffered with badly.
That's about it for now.
Thursday, 5 April 2012
Just an update
Well after our paediatric appointment last week, I slept on it, & woke feeling much more positive.
The way we started to look at it was that if River had seen the doc that we were down to see (who isn't an autism specialist but can still diagnose autism), he may well have sent us away for 3 or 6 months, yet kept us under his care- however, because we only saw a registrar, we are now being referred to the top dog, the main specialist who we probably wouldn't have ever met otherwise. Which is good!
I didn't want to get to the autism specialist's appointment in 3 or 4 months & risk her still not having the Ed Psych's report, so I discovered her email address, scanned our copy of the report, & emailed her a copy. I also included a copy of River's autistic traits (I'd given a copy to the registrar last week but just in case it gets mislaid I thought it best to provide an electronic copy.) I thought at the very least, she will have all the necessary documents about River for our appointment & at the very best, she may read them, be very interested in seeing River as he's so young & try to fit us in sooner if she had any cancellations.
However, today I received an appointment letter: an appointment for yet another registrar (not even the autism specialists registrar.) For September. So instead of seeing the top dog in 3-4months like we were told, we are seeing another registrar who won't have any ability to diagnose, in 5.5months. Who will of course need to refer us to a doc who can actually diagnose, which will again probably take another few months.
It is just sooo bloody frustrating!
We think River is on the spectrum, so does the Ed Psych, so why can't we get seen by a Paed that can actually do something?? So I called our Ed Psych (have I mentioned yet that she's lovely?) who said they are probably very nervous about putting a lifelong diagnosis on a child at such a young age, but said my best bet was to speak to my GP to try for a direct referral to the top dog.Which is a pain in itself, as our surgery have just assigned us to a new GP that's just joined so I have a telephone appointment with her next week & will have to tell her all about River from scratch so that hopefully she'll refer us.
Nothing is ever simple!
We've also got an appointment through for River's hearing test in May, & a letter accepting him for Occupational Therapy so we'll hopefully get an appointment for that soon.
Whilst chatting to the Ed Psych I asked her about nursery- children with special needs can get free nursery hours from the age of 2 instead of 3 which means River could start at pre-school in September. So really, I need to decide- do I keep him at home until he's 3 as originally planned, OR do I send him when he's 2, so that it can be a very gradual process- maybe an hour a week at first, then 1 morning a week, gradually building up. River isn't good with change & adapting, so it will be a slower transition for him. But he's still so little- I know lots of kids are in a nursery from a very young age but I've always spent all day every day with River! Then we need to decide- do we try to get him into a special needs nursery with nursery workers who are experienced with his needs, OR do we send him to our village nursery who openly admitted they have zero experience of ASD? Thankfully the Ed Psych was thinking exactly the same as us-earlier nursery would be best as we can gradually get him used to it. Also, we're steering towards the village pre-school as he will be surrounded by 'mainstream' kids who will stimulate him more & encourage him to learn to turn-take, mix with kids, share etc, also it's a familiar setting as the nursery playground is open to the public so we use it lots, and the fact they don't have any experience is almost a bonus as they'll have no pre-conceived ideas about River, autism etc & will be open to getting training, plus we'll get funding for River to have one-to-one support.
We also had the health visitor repeat her assessment this week, last done at 18 months. River has made improves in two areas: Visual was 3 months, it's now 6 months. Speech & Language was 3 months, it's now 10 months. It's still way off 21 months but it's an improvement which is great :)
Yesterday, we started the Brainwave programme which is exciting. However, we've recently been told that the Ed Psych/Portage are starting a new home-based programme for young children with ASD/ social & communication difficulties. They would like to start this with River in June, but wouldn't want River to do that & Brainwave. So we'd need to choose. I feel soooo lucky that we have these things to choose from but it's a tough decision. So we're going to do the Brainwave programme for 6 weeks, and see how River reacts to it, then decide.
Also, called DLA about our application, they received the GP report on 29th & can take up to 12 weeks to make a decision. Great.
So that's what's happened this week.
The way we started to look at it was that if River had seen the doc that we were down to see (who isn't an autism specialist but can still diagnose autism), he may well have sent us away for 3 or 6 months, yet kept us under his care- however, because we only saw a registrar, we are now being referred to the top dog, the main specialist who we probably wouldn't have ever met otherwise. Which is good!
I didn't want to get to the autism specialist's appointment in 3 or 4 months & risk her still not having the Ed Psych's report, so I discovered her email address, scanned our copy of the report, & emailed her a copy. I also included a copy of River's autistic traits (I'd given a copy to the registrar last week but just in case it gets mislaid I thought it best to provide an electronic copy.) I thought at the very least, she will have all the necessary documents about River for our appointment & at the very best, she may read them, be very interested in seeing River as he's so young & try to fit us in sooner if she had any cancellations.
However, today I received an appointment letter: an appointment for yet another registrar (not even the autism specialists registrar.) For September. So instead of seeing the top dog in 3-4months like we were told, we are seeing another registrar who won't have any ability to diagnose, in 5.5months. Who will of course need to refer us to a doc who can actually diagnose, which will again probably take another few months.
It is just sooo bloody frustrating!
We think River is on the spectrum, so does the Ed Psych, so why can't we get seen by a Paed that can actually do something?? So I called our Ed Psych (have I mentioned yet that she's lovely?) who said they are probably very nervous about putting a lifelong diagnosis on a child at such a young age, but said my best bet was to speak to my GP to try for a direct referral to the top dog.Which is a pain in itself, as our surgery have just assigned us to a new GP that's just joined so I have a telephone appointment with her next week & will have to tell her all about River from scratch so that hopefully she'll refer us.
Nothing is ever simple!
We've also got an appointment through for River's hearing test in May, & a letter accepting him for Occupational Therapy so we'll hopefully get an appointment for that soon.
Whilst chatting to the Ed Psych I asked her about nursery- children with special needs can get free nursery hours from the age of 2 instead of 3 which means River could start at pre-school in September. So really, I need to decide- do I keep him at home until he's 3 as originally planned, OR do I send him when he's 2, so that it can be a very gradual process- maybe an hour a week at first, then 1 morning a week, gradually building up. River isn't good with change & adapting, so it will be a slower transition for him. But he's still so little- I know lots of kids are in a nursery from a very young age but I've always spent all day every day with River! Then we need to decide- do we try to get him into a special needs nursery with nursery workers who are experienced with his needs, OR do we send him to our village nursery who openly admitted they have zero experience of ASD? Thankfully the Ed Psych was thinking exactly the same as us-earlier nursery would be best as we can gradually get him used to it. Also, we're steering towards the village pre-school as he will be surrounded by 'mainstream' kids who will stimulate him more & encourage him to learn to turn-take, mix with kids, share etc, also it's a familiar setting as the nursery playground is open to the public so we use it lots, and the fact they don't have any experience is almost a bonus as they'll have no pre-conceived ideas about River, autism etc & will be open to getting training, plus we'll get funding for River to have one-to-one support.
We also had the health visitor repeat her assessment this week, last done at 18 months. River has made improves in two areas: Visual was 3 months, it's now 6 months. Speech & Language was 3 months, it's now 10 months. It's still way off 21 months but it's an improvement which is great :)
Yesterday, we started the Brainwave programme which is exciting. However, we've recently been told that the Ed Psych/Portage are starting a new home-based programme for young children with ASD/ social & communication difficulties. They would like to start this with River in June, but wouldn't want River to do that & Brainwave. So we'd need to choose. I feel soooo lucky that we have these things to choose from but it's a tough decision. So we're going to do the Brainwave programme for 6 weeks, and see how River reacts to it, then decide.
Also, called DLA about our application, they received the GP report on 29th & can take up to 12 weeks to make a decision. Great.
So that's what's happened this week.
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