Friday, August 2, 2013

Thinking about the future

So, today I had to go to a meeting with Joshua's Occupational Therapist and Physiotherapist to have a goal setting/planning meeting.
I wrote down a list of goals for him and took it with me.  They were all short term goals.  I want him doing things that are age appropriate.  

I want him to walk better, we have been having an ongoing saga of crappy AFOs/SMOs.  Maybe a decent pair of braces would help him.  Maybe having Botox would help him.  But I want to do whatever we can to Improve his walking.  I doubt he will ever have a typical gait, and that's ok, just so long as we have done whatever we can to see the most improvement.  

I want him to have self help skills.  I want him to feed himself, and drink properly from a cup, to be able to dress and undress himself and to use the toilet.  He is doing pretty well feeding himself now, and he can drink from an open cup.  He just needs to practice more and work on the behavior that goes along with it (eg not deliberately tipping the water out and splashing it around on the table). He is nowhere near being able to dress himself apart from recently learning how to put his own hat on, but he has also learned to take his own shorts off so long as they are soft elastic waist shorts.  He can also put one of his croc shoes on, his left foot only.  So he is doing small things towards this goal, and I hope eventually these will be things he can manage completely on his own.  And toilet training, well that's pretty self explanatory.  I've been changing his nappies for 3 years and 2 months and I'm over it.  Even the cutest cloth bum starts to look less appealing after this long.  Lol.  I know there are people out there who have been doing this for their child for much longer, or will do it for much longer than this.  But I want out of this literally crappy task.  Joshua has shown willingness to sit on the potty or toilet, he understands when I tell him to sit on his potty.  He has just never done anything.  He doesn't communicate the need to go, or seem to realise when he has wet his pants when wearing undies.  I see the potential there, just waiting for it to all fall into place.  I guess my "end goal" for that is for it to happen by the time he starts school.  He still has about 18 months before that happens, so fingers crossed he will nail it by then.  

I want him to do normal three year old things like ride bikes. I want to find a bike he can master.  I want him to learn to ride his scooter.  I want to be able to go to the park with other families who are bringing their kids bikes for them all to ride around on and have something age appropriate for Joshua to ride, instead of just a baby bike.  As he is getting older I'm starting to feel conscious of the fact that his peers are getting to an age where they are going to notice things like the fact he still wears nappies, the fact he has brought a babies bike to the park etc, and I don't want to give kids anymore reason to tease him about anything than what they already have.  I want him to be able to fit in with his same age peers as much as possible and being able to do something as simple ad ride a bike/trike with other kids is all part of that.

I want him to learn concepts that other kids his age know.  Colours, shapes, counting, body parts.  I feel particularly discouraged when I see children who are far more physically affected than he is but who can indicate in various ways that they know these things.  Why can't Joshua?  He does know a few things, but definitely not to the level he should.  

I want him to be able to do things like puzzles and shape sorters.  Ok.  I know you can get through life ok without ever doing these things but they are just things that kids are *supposed* to do.  From what I have seen of preschool, they often spend the first 10 mins or so doing puzzles...  Mum or dad can stay and do a puzzle with their child before leaving...  What happens if your kid can't do a puzzle.  Kids are supposed to be able to do puzzles.  And keep in mind, I'm just talking about super easy basic puzzles at this point...  Not interlocking puzzle pieces or anything like that...  I just want him to pick up a damn puzzle piece with a big chunky knob on it and put it into the correct place on the puzzle board. A "baby" puzzle.  

Speech.  I want him to talk.  He has a few words.  Maybe around 35 now.  Single words.  No sentences except to say Goodbye to something.  Eg "bye bye car".  Which is pretty much how the majority of his verbal communication goes.  Waving and things and saying bye bye to them and pointing out cars and trucks.  It's good.  It's better than nothing. He is showing he has the potential there for more speech and hopefully it comes together for him.  But looking around at other kids his age (and much younger), talking in sentences, singing songs, recounting stories.  It pretty much sucks that my kid can't do any of that, or even express his most basic wants and needs.  I want to be able to pick him up from day care and ask him what he did today and him tell me about his day.  What he played with, who he played with, what he ate for lunch.  Anything.  

So, they were the goals I went in there with.  But apparently they didn't just want to discuss short term goals, they wanted to talk about long term goals too.  What do I want for Joshua in the future.  
Isn't it obvious?  I want the same things that every parent wants.  I want him to grow up, live life doing all the regular things that everyone else does and be happy doing so.   
I said I wanted him to have the skills to live an independent life.  They said what does independence look like to you?  Living in a shared home?  Being able to live alone?  What about relationships, what sort of relationships do you think he will have?  How involved do you see yourself being?
I mean really what the F*ck.  Do they not think he will be capable of living a normal life when he grows up?  Do they really think he will have to live in shared accommodation with other disabled people?  I mean there is nothing wrong with that really, but hello, I'm hoping he will grow up, get a job, move out, get married.  That sort of thing. It was a confronting conversation, and yes, I cried.  And as for asking how involved I will be, really, what the hell.  I'm his Mum, I will do anything for him that needs to be done no matter how old he is, until the day I die.  
Joshua is 3 years old.  I don't know what his future holds.  Physically, he is doing well, and I think he will be able to do anything he wants to do physically, even if it look a bit "quirky" as his OT said. My biggest worries for him are more around the speech and cognitive areas.  
I always hoped he would be of normal intelligence.  When he was younger I could fob this off a bit saying it was hard to tell, because all the ways of measuring cognitive ability are things that also require language or fine motor skills and if your child struggles with those things it's hard to get an accurate picture of their cognitive ability.  Now he is older, it is clear that he doesn't have the cognitive ability of a 3 year old, in my opinion.  He doesn't understand things that other kids do, he doesn't behave the way other kids do.  And I think surely, if he really had the mind of a normal 3 year old locked in there, despite his physical and language difficulties, he'd be able to show it.  He'd know colours, and body parts and all of those things and he'd be able to express that knowledge non verbally.  Pointing at the correct things when asked, choosing something of the right colour etc. 
Part of me still hopes he can "catch up".  Part of me wonders if having hopes like that is just delusional.  
I don't know if he can live an independent life, and do all the things one typically does as adult.  There is still so many question marks, and so much wait and see.  But I can't worry about those bridges until we get to them, and I can still hope that we never get to them.

I just want him to be happy.