Tired

So tired of things.
Tired of pain both physical and emotional.
Tired of food intolerances.  Celiac I can deal with, but all the others that constantly change suck.
Tired of not knowing who I am.
Tired of constant anxiety.  I've never known life without it.
Does happiness really exist?  People say it does, but I've never felt it.  I just 'am' or I'm so anxious I get depressed.
Sometimes I just wish I was a character in a book or on tv.  Sometimes they have happy endings and even when they don't the book or show ends so it's over. 
I have a husband and daughter but will I ever have a good friend?
Will I ever find something I can say I'm really good at--other than being very anxious?
I do anxious well.
Change is too hard.
I'm almost 42, will things ever get better if they haven't by now?
I survive each day and hope the next will be better.
I'm okay with being autistic.  It's who I am.
Some say that autistics are locked in their own world.  Not true.
It is anxiety that locks me in and won't let the real me out.  But I don't even know who the real me is because I'm am constantly scared to do anything.
Tears come regularly but nobody knows.
Other then being good at being anxious, I'm good at looking like everything is okay.
It's not.
Maybe one day it will be.

Current and Past Supports

I have learned much since originally writing this post.  Here are some of my current thoughts on ABA/IBI.  I would never recommend it to anyone. Click here to see a much more recent post of my thoughts on this therapy.

I was recently asked about current and past supports that our family has used, both good and bad.  I have written bits and pieces in past blogs but I will try and give an overview of the main services we have used since Micah was born.  It doesn’t necessarily go in complete chronological order since some of it overlapped and some stopped and started at different times.  It would also be a very long read!  The coloured words are all links.  Just click on them and you will get to the websites.

Micah had to stay in the hospital for three days when she was born due to a collapsed lung.  We brought her home on the Sunday and that night and many more were torture.  She screamed most of the time.

The next morning I called the lactation consultant who had taught one of our prenatal classes.  It turned out she was a nurse working for York Region Public Health department’s HealthyBabies, Healthy Children (HBHC) program so she came to help as part of that program.  It was the start of our involvement with many services that would help our family. 

The Public Health Nurse (PHN) gave us many tips because Micah barely slept, she wanted to nurse constantly, and when she wasn’t nursing she was screaming.

The PHN got us involved with a Family Visitor (FV) in the HBHC program.  The FV came to our house regularly or met with us at a Resource Centre (which turned into Early YearsCentres).  She answered parenting questions and gave advice about Micah’s behaviours and things I could do with her.

We were also referred to Early Intervention Services (EIS) and Preschool Speech and Language (PSL) when Micah was nine months old.  She wasn’t babbling and did things like running her face along the floor. 

We did sensory programs, getting ready for school programs, and social programs with EIS.  They even had an autistic girls group when Micah was four or five.  We were given occasional consults with an Occupational Therapist (OT).  It wasn’t enough so they referred us to the Community Care Access Centre (CCAC) for an OT to come regularly.  The first OT that CCAC sent was the best.  She helped with sensory issues and gross and fine motor problems.  She also helped Micah with some of the skills she would need to start kindergarten and gave a useful report when she was done.  CCAC has been an on and off again service through the years.  I call every so often when we need to work on things as they will only give you a block of time.

PSL referred us on to the Hanen Program for speech when Micah was about two.  Micah was speaking single words but should have been at two word sentences when we started.  She would say a word and we would never hear it again.  I didn’t think much about that because I didn’t know any better.  I was worried about the sentences.

We had three Early Interventionists over about two and a half years.  Our first one seemed to be the best but the last one was pretty good also.  They helped a bit with Micah’s behavior and helped us teach her different skills.

I don’t know how any of the people who worked with us those early years could not have seen the autism but I think the PHN knew and that’s why she got us involved with other services so quickly. Maybe the agencies involved weren’t allowed to suggest what the trouble could be.  If I had been as good at researching things on the internet then as I am now, we would have known what to go to the doctors with.  Micah had so many of the signs of autism.

When she was eighteen months old we also started working with someone at Blue Hills Children and Family Centre. We were there because of what came across as defiant behaviour, being uncooperative and meltdowns (we now know it was autism).  I don’t remember what the ‘therapy’ was called but Micah and I were in a room with a video recorder and the therapist was behind a two way mirror watching while we played.  I was supposed to follow Micah’s lead.  Of course nothing ever came of it.  Things were/are still the same.  When we received the diagnosis of autism they said they could no longer help us because they do mental health.

I took many parenting classes and my husband took some with me also.  We kept being told by professionals to take more parenting classes.  They were saying the problem was us but especially me.

During those first four years we got the most help from our PHN and FV through the Healthy Babies, Healthy Children program and also the OT through CCAC.  I didn’t find EIS that helpful but it was nice to have the service because I did learn a few things.
All of the services we had during those years were covered by OHIP.  We didn’t pay for any private services because we didn’t know what was going on yet.

At four and a half, Micah was finally diagnosed with autism.

I started attending the parent support group at AutismOntario York Chapter and also any workshops they put on.  In addition, I started attending the parent support group at Kerry’s Place.  The parent support groups are good even though I don’t generally talk unless directly asked a question or there is a small group of regulars.  I do enjoy listening to the other parents and some of the ideas they may have to share.  Through Kerry’s Place we were provided with an autism consultant.  I could meet with the consultant as needed and learned strategies to help our interactions with Micah.

Another thing we did at that time was to get on the government IBI waitlist which had a two to three year waitlist and still does.  The doctor that diagnosed Micah had told us about the IBI waitlist and Kerry’s Place.

Less than a year after Micah was diagnosed, I was diagnosed on the autism spectrum  and sought out help from our autism consultant for myself.

While we were waiting for IBI, we hired a therapist privately for a couple of hours a week to help with some behaviour and social skills.  In addition to this, I took the graduate certificate program, Autism and Behavioural Science, at Seneca College and went to a couple of Verbal Behaviour workshops put on by EO Inc.  Those workshops were amazing and I learned a great deal about Verbal Behaviour.  I decided that was the way to go when we got our IBI funding.

I sought out help from my autism consultant to get accommodations in my college courses.  I had tried to do the courses on my own without and it was a disaster.  I didn’t know that things could be put in place to help me in college.

When Micah got to the top of the IBI funding waitlist, we chose the direct funding option so we had control over the therapy team.  I did not want to use the regional provider.  According to their rules, we had to have a psychologist (I didn’t see the point of this as they didn’t choose or write the programs) and a senior therapist approved by them.  We also had to hire a few therapists.  One of the therapists we hired had never worked with an autistic child before so we fully trained her to provide IBI to Micah.  She ended up being a great addition and did well with Natural Environment Teaching (NET), even keeping up maintenance while doing respite after our funding ended.  Micah had very little instruction with discrete trials and a lot of NET which worked well for her and her abilities.

In this video of a part of their session, Micah was working with her main therapist on expanding sentences, story telling, and questions-when.  She was not kept at the table with hands in her lap.  She squirmed enough to slide off the chair but that was the way she was comfortable and no one put a stop to it!  It worked for her.  From August 2008.

In the past, Autism Ontario York Chapter had a social worker, Dr. Kevin Stoddart, come in once a month to meet with teen and adult autistics and their families.  I saw him several times for my anxiety.  I also tried OT through CCAC for myself but I did not get a good therapist so it was a waste of time. She also tried to do Cognitive Behaviour Therapy with me without taking time to teach the emotions along with it thus it was not successful.

A couple of years ago my husband was diagnosed by a psychologist at the Redpath Centre where Dr. Stoddart now has his practice.  It was Dr. Stoddart who had recommended that my husband be assessed when we had an appointment at his office.

Redpath has been good for us.  Micah had an updated psychoeducational done there last winter and I had a full assessment there a year ago which added anxiety disorders and a learning disability to my asperger’s diagnosis.  At least I knew why I struggled (but succeeded) in high-school and college.  I am currently seeing Dr. Stoddart again for my relationship and anxiety troubles.

Currently, each of us in our family has an autism consultant at Kerry’s Place.  I have one for Micah and I and Randy has one for himself.  Mine helps me with things like Micah’s schooling and IEP.  She was the one who suggested I start a blog.  I had never thought about that in the past.

The two main agencies we use for services including activities and workshops are Kerry’s Place and Autism Ontario.  Kerry’s Place is government funded so we don’t pay out of pocket its services which include workshops.

Autism Ontario has minimal to no fee for activities and workshops. The main place we have to pay for services for our family is at the Redpath Centre. 

For now, Autism Ontario, Kerry’s Place, and the Redpath Centre fill most of our needs.

We have had a block of ABA through the new government initiative but I was not impressed.  I wanted to work on Micah’s aggression but it got twisted around to working on her morning routine which is not generally a problem.  We are on the waitlist again and will try something else this time.  We’ll give it one more chance.

I have learned a lot so I can help with most of Micah's needs. I am also pretty good at finding information on the internet.

At the moment I am waiting to see what if any support I will receive from Developmental Services Ontario for myself.

We have been helped by several agencies but there were others that turned us down because Micah doesn’t have an intellectual delay.  We really needed help from a certain agency that works with kids who have aggressive behaviours but they won’t accept Micah even though she has autism and can be very aggressive with us.  It is very frustrating when we are turned down when we are desperate for help and cannot receive it anywhere.

Parent support groups, word of mouth, the internet and agencies currently worked with can all provide ideas for resources for parents or individuals on the spectrum.   I got most of my information in those ways.  I also pick up a lot on blogs and Facebook.

The Appointment From Hell!

I am currently going through the application process for Developmental
Services Ontario (DSO).

I was told I would qualify because I was grandfathered in through the Passport Program. It is a funding program to help people with developmental disabilities get out into the community. I use mine for my horseback riding lessons.

To complete the application process, my autism consultant and I had to meet with an intake worker from DSO. We were supposed to have two three hour meetings but managed it in one.

The intake worker seemed nice enough but the whole process was long and frustrating. There was question after question in many different areas that someone might need support in, such as cooking or going shopping.

Due to my communication deficits, I had great difficulty answering some of the questions. Sometimes when I was asked a question, I just sat there trying to figure out what I was being asked.  My autism consultant regularly mentioned to the intake worker that autism is a communication disorder and so the intake worker would try to rephrase the question but in actual fact most of time she just repeated what she had already said.  My autism consultant ended up having to rephrase the question for me.

There were times that the intake worker would speak to me like I was a baby, making me feel stupid. I know she was trying, but I don't think she understood enough about autism.  Autistics do not need to be treated like babies who don't understand.  We just need someone to explain things to us in a different way sometimes. It doesn't make us any less intelligent.

I was asked whether I needed support in a certain area, what level of support, and for how long.

Near the end of the appointment, the intake worker started asking about Self Injurious Behaviors (SIB's) and if I needed support in that area.  I didn't understand that I could be supported with that.   Do they support you to do it?

When my anxiety is really bad I do have SIB's.  I may bite my arm or hand hard enough to feel it but not hard enough to break the skin.  Sometimes I hit my head or tug on my hair but not enough to pull it out.

I don't want to injure myself,  just make the bad feelings go away.

My autism consultant and I told the intake person that nobody would really ever see it and so probably not could not support me with it.

I have told my autism consultant sometimes when I am doing badly and at times I have actually had SIB in front of her but it really isn't obvious unless you know exactly how I do it. I am very good at hiding things so it is never noticed.

I was so stressed at the appointment with all of the questioning and the frustration of getting the worker to understand my SIB that I was having SIB while trying to talk to her and it was not noticed. I really could not figure out how they were going to support me with SIB when they couldn't even see it when it was right in front of them.  It is the anxiety that causes it so it is the anxiety that needs to be dealt with.

Once we got through that set of questions, the last bit was short and easy so I was able to calm down a little.

The next step in the application process is that the intake worker has to write up a report based on all the answers I provided.

Now, I wait to find out what, if any supports I will receive from DSO.

The one thing I learned is that the service agencies that are going to be providing help to autistic people really need to learn more about autism. They also need to learn that we are intelligent and do not need to be talked to like babies.

We are adults who may just need things explained a different way.