Back in August l posted about how we were finally moving forward with this whole thing. Well we are but very slowly. It’s surprising how slow the system is when everyone knows that the sooner you get a diagnosed child into the appropriate therapies the better it is in the long run.
So here’s our update.
I haven’t really had time to post lately because hubby is working 60 – 70 hrs/week so I’ve been having to solo parent and by the end of the day I’m just too tired to think.
W has regressed and almost completely stopped using words to communicate. We think it’s because the baby doesn’t talk but gets ‘what he wants’. And although we understand the why it’s a habit we need to stop now before it potentially becomes a permanent problem.
Which is ironic because he has echolalia and will literally repeat everything all day.
We’re on the wait list for a support worker so we’re still having to navigate the system alone at the moment. But we’ve been receiving schedules for workshops. These workshops are not therapy they are more like classes on how to deal with certain things and although it would be nice to meet other parents in the community and get extra information these workshops are poorly timed. They are in the middle of the day and daycare is not provided. I literally don’t know anyone who could babysit at 11am on a Tuesday.
W had his first SLP (speech) appointment last week and I was so nervous because it was on the 4th floor of a medical building. W hates medical buildings and elevators so I was expecting a meltdown but he did really well. Going forward his appointments are supposed to be at our house.
His SLP will be making up picture boards so he can use visuals to communicate needs and wants. From what I saw at his appointment it seems like it will work.
We are now receiving a diaper subsidy because he still isn’t potty trained so that’s one less expense.
The city we live in has a subsidy program for daycare and I am trying to get that for him as well because daycare should (hopefully) help with his social and communication skills development. It is a ridiculous amount of paperwork and hoops to jump through but being a single income family it’s the only way we would be able to put him in daycare.
W has become reclusive and hides in his room all day trying to avoid the baby (9 months); which is another reason why I need to get him in daycare.
It is exhausting and overwhelming but big picture one day all of this work and frustration will have been worth it.