Update on the Bear

The Bear is having Speech Therapy as we speak.  His lovely therapist took one look at me this morning and said "Would you like me to take him by myself and you can have half an hour to yourself?"  ("Um, yes!")  That would have to be the best offer I've had all month!  He had a hissy fit when I left the room, and has had another couple of tantrums, and come out of the room a couple of times, but it's not going too badly, I don't think.


So how is he going, in general?


His speech is very slowly coming along.  He still greatly prefers to use non-verbal communication, such as taking my hand and leading me to what he wants, but is slowly starting to use a few words.  I feel that he has not only a speech delay but also a speech impairment *, meaning that the words he does use spontaneously are quite difficult to understand.  Funnily enough, his echolalic words are much easier to understand, but I guess that could be because I've just either said or heard them, so I know what he's saying.


He understands some signs, but is only using one, and that one only sparingly.  It's the sign for "GO!", and it's a fun one, because it often means that the "Wait" is over and it's his turn on the slide. 


The Bear's behaviour is, shall we say, trying right now.  One of his stims is taking off screw caps, which means that if he can get his hands on anything at all, it's usually all over the floor in about three seconds.  He is also still climbing onto the kitchen bench at any opportunity, usually to try and get the phone, but if there's anything else up there he'll explore that too.  He has started hitting again, when he's frustrated, and I've noticed that he's starting to bite his own hands a fair bit.  Scratching is still very much part of his repertoire as well.  Another new trick is to tip all of his toys out on the floor, then walk away.  There is no desire whatsoever to play with anything; it's all about the noise.  He also likes to brush anything that's on a surface onto the floor.


Right, well, I've had my whinge, so here's some of the good stuff.  He has started talking on a pretend phone.  He says, "Eh-oo, Bobba, ya-ya-ba-ba, Byeeeee!", which translates as "Hello, Bob the Builder, (mysterious builder-speak), Bye".  It's the same scenario every time, which I understand is typical of ASD kids, but it's a fantastic start.


And yesterday at his special needs playgroup, Twinkle Twinkle came on.  He gave an enormous smile, then started running around the room in a giant circle, singing along (perfectly in tune...I think we may have a bit of a musician on our hands), and clapped madly at the end.  It was a magic moment, and I really wished I'd had my video camera (except that I don't own one!) with me.


Anyway, speech is nearly over, and I can hear him screaming, so I'm off for now!


*His speech therapist has just told me that he does have elements of verbal dyspraxia as well as PDD-NOS.

looking after myself

Today, I did something just for myself.

The Bear was driving me crazy.  His latest escapade was getting through the child-proof lid of a bottle of anti-histamine.  Luckily he didn't drink any, but still.  I know that ASD kids often have fine motor skill issues, so I've been trying to focus on the positive - ie that his fine motor skills are excellent.  But still.

So when his lovely speech therapist rang to cancel due to illness, I was momentarily distraught.  I'd been counting on that time to fill our morning.  What on earth was I going to do now??

That's when it hit me.  Daycare, known to us as Kindy.  I made a frantic call to the Director, who fitted him in with no problem.  Three hours of Mummy time.  I stopped off at the shops and bought a pair of jeans which will have to be returned because I was over-optimistic about the size of my thighs, then came home, played on the computer for a bit, read a magazine and had a cup of tea.  I have done some washing, but only because I felt like it.

I feel like a new woman.  I feel like I can make it throught the rest of the day.  I feel excited that I'll be picking the Bear up in 15 minutes.  What do I NOT feel?  Guilty.  This was my time, and I'm worth it!

a plan and some progress

After weeks of trying to sort out all of the different therapies available for the Bear, we think we have decided what we're doing.

The plan, at this stage, is to continue with speech therapy, and to send him part time (five day fortnight; ie two days one week and three the next) to an autism specific centre that caters for 2 1/2 - 5 year olds.  It's about 20 minutes from home.  We need to make an appointment to see the centre and meet the staff, but it seems the way to go.  The centre (it's one of about half a dozen in the state) has glowing reports from everyone who has any contact with it.  In fact, I've not heard a single bad report.  It won't be cheap, but you do what you have to do, don't you?

I'll let you know how we get on when we visit the centre.

In other news, the Bear is really coming on.  For months Pacino has been trying to get the Bear to wave goodbye to him in the mornings.   Last week he finally did it!  And this morning, he actually said "Bye" as he waved.  We were beyond excited.

And this morning, while playing with a toy car, he said "car"!  Again, this is really exciting.  He's been saying Car (pronounced Har) for a while, but only in relation to the big silver thing in the garage that we ride in.  Today, he generalised his knowledge - a car can be big, and we can travel in it, or it can be tiny and I can play with it. 

A third milestone was that this morning, for the first time, he rolled some playdough with his hands.  Granted, he still took quite a few big bites and ate a lot (I'm so looking forward to tomorrow's nappy), but he also played with it appropriately. 

So lots of very significant things are happening with our little Bear, and we are over the moon.  He's come a long way in a relatively short time.  I can't wait to see how this new program benefits him.

flotsam and jetsom, bits and pieces, this and that

Ok, so my rage is ebbing away, slowly being replaced by acceptance.  I'm surprised that the diagnosis affected me so much, because it wasn't like we weren't expecting it.  I think what really got to me was having to talk other people through their own feelings about it, when all I got from anyone was "He's fine, look at so-and-so", or "All two year olds do that, stop worrying", or my all-time favourite "You need to take him to the park more".   For the record, we're at the park a lot!  So now I feel a bit resentful that no one listened to me when I was worried, but now I have to be the one to comfort them after my concerns were proven valid.  Anyway, life goes on.

The Bear is doing brilliantly!  Yesterday at playgroup he put two words together ("More bubbles").  That is the exact phrase we have been working on for three months, so it was very exciting and rewarding to hear him say it.  He also followed two sets of one-step verbal instructions yesterday.  Yay for increasing receptive language!

I've learnt a couple of things already.  One is that I prefer to descibe his condition as "Bear has Autism", rather than "Bear is Autistic".  (No, Bear is Bear, and he has autism.)  First and foremost, he is a beautiful, funny, affectionate little boy who loves the Wiggles and reading Spot books.  Oh, and he has autism.  The other thing I've learnt is how little the PDD-NOS label means, and how seldom we use it any more.  For one thing, no one knows what it is!
Believe it or not, we have a life outside of therapy!  This morning, the Bear and I met his auntie and baby cousin at the park.  We had a great time (sorry, no pics, forgot the camera and didn't have a chance to take any anyway) and can't wait to go back.  Next time, we'll go to a park with a fenced off play area ;-).

The Gig is looking forward to her Guide (Girl scouts) camp in a couple of weeks.  Next term, they're doing outdoor camping, and she really can't wait for that.  She is also giving a speech to her class about autism, as next Friday is Dress Differently for Autism Day, and she wants all her class to join in and help raise money.  I'm beyond thrilled about this, as only a couple of weeks ago she said she was embarrassed that the Bear can't speak, and embarrassed that he has autism, and she didn't want any of her friends to know. 

And Pacino has moved offices, and now has a larger office with a view of the river.  It's amazing how much that's been affecting his mood, and how relaxed he was when I picked him up last night.

So what about me?  Well, I finally got my hair done, after four months (my regrowth was lovely), and I've been to the physio for my shoulder.  It hurt, and I'll have to go back lots, but at least I'm doing something about it.

Right, well you're all caught up now, and there's silence from the Bear's room.  Hopefully I wore him out at the park this morning and he'll sleep...wish me luck.

smarter than the average bear

It's been a while since I posted about the Bear and his speech issues.  Which is odd,  as the reason that I started this blog in the first place was to be able to process some of the thoughts and emotions that his journey raises.

So let me tell you how he's going.  Well, he's doing very well with repeating words.  He now repeats about 50 words, including "day-ya" (shower), "dow-dare" (downstairs - said with force, to the dog), "dad-da" (no, not Daddy, but Jasper the dog), "nin-ny" (kindy) and "dee" (afternoon tea).  If he wants something, and we ask him to use his words, he will say "more".  Unfortunately, if he hasn't had "some" of whatever he wants in the recent past, interpreting "more" can be difficult, to say the least.  If he wants assistance, he is learning (with prompting) to say "eh" (help).  And when he wants a cuddle, he needs to say "uh" (up) before we will pick him up.

He is yet to initiate any words other than "har", which means car.  "Har" seems to mean, "Mummy, I'm a bit bored with you.  Let's go and get Daddy and the Gig."

My little Bear is also doing very well with his Occupational Therapy.  He has some motor planning problems (probably motor dyspraxia), and we are working on getting him able to draw descending vertical lines at the moment.  We are also working on sequencing activities, using flash cards to tell him what's coming next.  This is going well.  He likes knowing what's next, but isn't quite so keen on relinquishing control!

The third therapy he is receiving is a Playgroup attached to a Special Needs Early Childhood Unit.  We've only been twice, and each time he has done some spectacular door work.  The second time, his door work wasn't nearly as frenzied or desperate as the first time, so hopefully it will ease as time goes by.

In the meantime, here's what he's really good at - problem solving!

best behaviour

This morning, the Bear and I went for an interview at his new kindy. It's part of a local special school, and his application had to go to panel to be approved. This interview was the final thing before his enrolment was finalised.

Well! Can I just say that he must have known today was an important day. He must have been very aware that his immediate future rested on this interview.

"Oh!", you must be thinking. "How beautifully, how perfectly, how sweetly he must have behaved."

Well you'd be wrong.

So very, very wrong.

The Bear pulled out all the stops and did some sensational door work. (Door work, for those who don't know the Bear, involves opening doors. Then closing them. Repeat ad infinitum.) Then he started his light-switch work. He switched the lights on, off, on, off, on, off, like a thing possessed.

Then he started biting. Me, thank goodness. I now have seven bite-bruises, all on my lower left arm. That's the one that was stopping him from opening the main door.

And oh! Then he noticed the Principal's pen. Clearly, the lid needed to be taken on and off a few times. And who better than the Bear for this important job? Whoops, another bite for Mummy. Upper arm this time, for a change of pace.

At this point, the Principal noted that he was displaying a lot of ASD behaviours. Really? I hadn't noticed.

But do you know what? That's exactly the behaviour I wanted to see from him today. You see, he needs this place at this kindy. They are the best people to help unlock the child within my gorgeous boy. He will grow and develop to be the child he is destined to be. They are the people who will teach him, and me, and us, so much as we travel this as yet un-named path. We don't know yet whether the Bear has a Speech/Language Impairment, an Autism Spectrum Disorder or both.

What we do know is that he's our bear. And we love him.

how i really feel...putting it into perspective

Where should I start?

Upset, mad, devastated, worried, panicky, scared, angry, sad, overwhelmed, disappointed...the list could go on and on.

I'm talking about the Bear's (formerly known as the Toddler) speech issues. We are at the beginning of what I know is going to be a long and arduous road for all our family, especially the Bear. I'm usually pretty much okay with his diagnosis (not that it's official yet, but it will be), but every now and then, like right now, I get really angry and upset about the whole thing. It's so unfair on my poor little man. I worry that he'll never talk properly, never have any friends, he won't manage at school, if he even goes to mainstream school, he won't be able to hold down a job...and so on.

It doesn't help when people point out other children who have overcome their speech issues. That is not my child, and they don't have the same condition. However, when I hear about a child with the same condition, who is now speaking well, it brings me great hope.



So, I thought, as I'm feeling so negative, maybe I should take a look at where we are at in reality rather than Mummy-freakout-zone.






Okay. The Bear has (almost certainly) Verbal Dyspraxia. Also known as Childhood Apraxia of Speech.
(But he's still my Bear)



He is having Speech Therapy.
(And making good progress)



Tomorrow he starts Occupational Therapy.
(This will help the speech therapy as well)



He is under the care of a Developmental Paediatrician.
(Who is really caring and compassionate. We were lucky to get onto his books)



He has failed an early screening test for Autism.
(A tough, non-prescriptive test with a high false positive rate)



He may not have Autism, but probably has PDD (Pervasive Developmental Delay).
(This diagnosis can be lifted, and will allow us access to funding and services for the Bear)

He will start attending a special needs kindy soon. It's attached to a local Special School.
(He will get extra therapy from qualified and dedicated teachers)

There are no guarantees that he will attend the same school as his sister. He may well end up at the special school for a shorter or longer time.
(If so, that's where he'll thrive the most)



But you know what?



He's still my precious, funny, happy, cuddly, laughing boy. How lucky we are.