Freya, Quirky Kids is where Matilda had her ADOS assessment. We took it one step at a time. I felt exactly the same, that someone understood and listened. We couldn't afford everything, but we did the ADOS, got a diagnosis and then got funding to do further testing..... it was better that way and she understood. We did it within a week of our first appointment. We got %75 percent of the ADOS amount back after the diagnosis. Then we got a health care card for Matilda from the diagnosis and the paediatrician set us up so we found funding and had some help through Autism Australia.... everything else was easy to get help for once the ADOS was done.
Hope you don't mind me ducking in here... we had an initial speech pathologist appointment today and she suspects our son is on the spectrum. I had had my suspicions but as he makes eye contact, smiles etc I thought it mustn't be. But she explained how the spectrum is made up of different areas. He has a pretty severe social communication delay so we need to follow up with a pediatrician next to see if we can get a diagnosis, then more speech therapy.
Anyway, I had some questions...
- Has anyone used the book "More Than Words" to help with social communication? What did you think?
- I had booked a hearing test for next week but my son doesn't respond to 'games' etc and wouldn't do any of the speech pathologist's things... so maybe a hearing test would just be inconclusive & a wasteof money? Anyone done one with an ASD child? How did it go?
Anybody out there? I know we dont have a diagnosis yet so I dont really belong here but we're really struggling
I'm trying to start researching where to from here, what the journey will entail... anything to keep me busy and feel like I'm a fit parent for the job. My H and I have been fighting, which we dont normally do. We can't seem to understand each other and we're both sad and confused. Today when my son had a head butting breakdown I was more aware of the problems he's having and I just start crying. The blinkers have come off. The hope that he'll start speaking like other children his age any day now is gone. I'm realising all the symptoms he has... they are all coming together now rather than just individual personality traits.
I'm so scared and sad. I want to be able to talk to my son one day. Im grieving the parenting journey I thought I was going to have. I want why questions. I want magical fairytales and fairies in the garden. I hope so, so much that when we start therapy with him he develops in leaps and bounds. Please
Anyone feel like sharing how they felt in these early days? What helped? How time (and hopefully progress) has changed things?
oh meow *hug* I"m sorry I wasn't able to answer earlier. I don't know how to start, our journey took years, but Matilda's speech was good, just her communication which was bad, if that makes sense.
The grieving process is hard. I mean when does it finish? I think I still go through times when I want my "normal" child. I want to pretend everything is okay and fine, and TBH we have times now where it is. Matilda's communication grew in leaps and bounds with early intervention. It was awesome for her.
Thank you so much! I look forward to reading your journeys!!
It means a lot to read your post... I feel understood. Thank you. So glad to hear the early intervention helped!
I think my son and I have similar conditions as I had some of the same issues. I had a lot of early intervention and clearly it made a difference as I'm a normal adult (as normal as normal gets... what is normal huh?).
My H and I managed to talk better again and I'm just really looking forward to seeing a pediatrician and getting started now. At the moment, the idea of seeing progress and helping our son is giving me hope and it cheers me up again.
Brendan has regular hearing tests as he has poor hearing and ear health. We need to have two audiologists do the test, one sits outside the soundproof booth and does the actual testing the other is in the booth with us and distracts him and tries to keep his attention. The first 4ish (can't remember exactly, we've had too many!) tests were inconclusive, but they picked up fluid in the ears and the poor health, they also picked up that the drum itself wasn't responding well.
Early Intervention is definitely worth it. Without the last 3 years of speech and OT I'm certain Brendan would be a lot worse than he is now, especially his SPD.
I have been meaning to do this for a while. Just so I could lay it out. I feel like I am posting to no one though.. I know I am not and you ladies are just as awesome.. but damn I wish Lu was here to read it and tell me what she saw.
So glad to hear the early intervention helped!
Bookmarks