Service (or not)

Is it too much to ask that a service provider put my child before their convenience?

Yesterday we finally had a meeting to discuss my daughter's services. They had been put on a 6 month "break" because her home aide was suddenly not working for them anymore. No explanation given, no transition, just a call that she was no longer working there, and that they had no on to replace her. Kitten spent weeks waiting by the door for her after school, crying, "My L---e. My L---e has disappeared!"

At that point, we should have went looking for a new service provider. But then my dad got the news that his cancer is back. Then, just before Christmas, my mother died suddenly of a heart attack. So I let it go. We were reeling with the news, making new plans to drive the 11 hour trip to be with my dad and I just couldn't deal with the paperwork. 

We have already made plans to visit Dad again this summer. Now they are telling us that if we don't start services with them now, they can't guarantee a worker for her in the fall. Plus, they want us to commit to a full summer of 3 hours a day with the worker for the bullshit "family centred" approach, which means I have to be present and involved for every session, and the therapists teach me to administer therapies to my child, essentially. 

Then they gave me their take on why they made us wait that six months, yet won't commit to providing services for Kitten now. They feel that I am not ready to commit to the process, and they don't want to put stress on ME. They keep talking about me being "ready" as if my daughter is just going to stay in stasis while she waits.

She is 5 now. She is going to be in kindergarten in the fall. She has almost no functional language, is not potty trained, is barely tolerant of parallel play with her peers, and is a risk for elopement because classrooms cannot be locked. How is she supposed to develop speech, life skills, safety awareness, social skills, if she can't get therapists because the provider wants to wait until I'M ready? 

No question, I hate the exclusively in-home therapy, family centred approach, but I will endure it for my child to get the help she needs. 

We will now look at a new service provider. Again.Time doesn't stop for us to catch our breath.  I'm still not happy, not optimistic about the prospects, still grieving for my mother, but Kitten can't wait. 

On awareness

Last week at the bus stop, I talked to another mom as we stood there waiting for the first child to make it off the bus. That child is autistic, with what is clearly SPD and is always crying and throwing his backpack, noise cancelling headphones, and finally himself at his mom as he exits the bus. She is likely trying to break him of the habit of expecting her to carry him off the bus, and I feel for her. He is probably 60+ pounds and nearly 5 feet tall, and she is quite tiny.

The mom I was chatting with looked slightly appalled as the usual routine crying and screaming took place. I noted that it could be hard sometimes as our children get older and bigger. That was when she replied, "Well, there is obviously something wrong with him. She should drive him to and from school in her car."

My son stumbled off the bus (his coordination is still problematic), and I commented, calmly, "He is autistic," as I steadied my son.

She replied, "Well, yes, you can see that he has problems. His poor mother."

I replied, "My son is autistic too."

She was nonplussed. I don't know what she was thinking. She did not, to her credit, tell me she was sorry for me or my son. She finally said, "Well, okay, I see." Then, "I know now. Good."

Her daughters jumped off the bus, giggling like mad, and we parted ways, but it left me a bit out of sorts.

This was the same lady who tried to talk to my daughter earlier that week, and when I told her Kitten is non-verbal, gave me a blank stare, then babbled a bit about how some children are shy and only talk to their parents, and I just let it go because I didn't want to get into it, and the bus was arriving.

This isn't the worst kind of person I have dealt with. My "favourite" is still the woman at Monkey's gym and swim who, upon learning that my son was autistic, asked, "Your son has autism? Are you sure that he should be in a class with kids who don't have autism?"

It isn't that folks are deliberately mean. It is just so discouraging that "awareness" is still lacking with most people.

I have to remember that most people, while they might know someone with an autistic child, or be related to someone who does, they are not immersed in non-optional autism awareness 24 hours a day. I forget that the terminology, the jargon of autism isn't common knowledge. For most people, autism awareness is barely on their radar, if at all.

That is why I don't agree when people say that the message should be "autism acceptance" or "embracing autism" rather than "autism awareness". For the parents, caregivers, teachers and professionals who are involved with autistics, we need to go beyond awareness, certainly, but the general public really does still need that basic education about autism that we find so familiar and simple. It is hard to accept, embrace or celebrate what you barely understand.