Our Family's Journey Through Autism And The Untold Beauty Of It. Megan is an amazing child with autism through her we have learned the beauty of autism.

Monday, April 9, 2007

Where Do We Go From Here?

Where do we go from here isn't that always the big question. Well I wasn't quite sure, I had been told to contact the Infant Development Work, so I called and made an appointment for our first visit. for those of you that maybe unfamiliar an Infant Development Worker is someone who comes to your home and basically assesses the development of your child, and can tell you about all the programs available in your area.

Cora was our worker, an angel in disguise I'm not sure what I would have done without her, she supported not only the child but the parents while you get your feet planted on the ground. She was full of encouragement and ideas. Through Cora we learned a lot about Autism, we learned how ABA therapy was showing promising results although as mentioned before totally unaffordable. There were also some other therapies that were being provided in our community such as speech and music. We were put on a waiting list for speech, we waited for 3 years before moving away, the speech therapist met Megan once and decide that she didn't want to work with Megan, we were told she had no experience with Autism and didn't feel comfortable working with her. I complained to the Dr's they called the speech therapist but to our avail the answer was still no. No other speech therapist would take us on either as we were told we had one in our community and that was who we had to go to.

Megan was now approaching her second birthday and still had little to no speech, so Cora was teaching us how to sign, and use Pecs ( picture cards) I enrolled in an early childhood signing class, however Megan did not like to sign the only one she would use is the sign for more, and she destroyed every pec we gave her. We were persistent but so was she! It seemed as though she thought no matter what I should understand her, who doesn't want that? So for the next three year yes I said years, she would not sign, use pecs, or point she would stand in the kitchen and just cry, I had to figure out what it was that she wanted, these were some of the hardest days I had. It was always hard to determine exactly what she wanted was she tired, hungry,wet, bored in pain? I just went down the list and would eventually figure it out, I do have to tell you during this time I also worked graveyard shift four nights a week, I would get home at 6:30 am and Megan would wake up within minutes of that not to mention Steph would wake up too. So I would stay awake all day, take care of the kids, Dr's, preschool, infant development worker etc. then I would make dinner, bath the kids, and put them to bed. and get about 3.5 hours sleep, their dad didn't think he should have to help, he worked all day so he should be able to spend his evenings and weekends anyway he wanted to.

Cora was a wealth of information she always knew who was speaking where I saw a lot of speaker but one group that I really liked was a group called ANCA, it was a panel of adults with Autism, they were very insightful helped me understand all the sensory issues that surround people with Autism.They explained how lights, sounds, textures, touch and smells could overwhelm them. It was so helpful to understand these things. As Cora and Megan's relationship developed Cora started working with Megan at a little table, trying out some basic ABA exercises the first being look at me. From there they progressed into some other exercises but before we knew it Megan turned three and was no longer able to receive services from the infant development worker, a sad day in our house.

I enrolled Megan is preschool, the one that was run by the group that supported the infant development program, at first it wasn't to bad Megan seemed to enjoy going, then she started to regress........ she would not interact with any of the teachers, or kids, just sit in a corner and cry, we decided to hang in there and see if it was a stage and would improve.... it didn't at the age of three Megan had dropped out of preschool.

It would be another 2 years, a divorce, and a long distance move before Megan received anymore services.

Stay tuned for the next post, What we did during the 2 year wait.

I don't know who the writer of this poem is

Build me a Bridge

I have known that you and I
have never been quite the same.
And I use to look up at the stars at night
and wonder which one was where I came.
Because you seem to be part of another world
and I will never know what it's made of.
Unless you build me a bridge, build me a bridge,
build me a bridge out of love.

I long for the day that you smile at me
just because you realize
that there is a decent and intelligent person
buried deep in my kaleidoscope eyes.
For I have seen the way that people look at me
Though I have done nothing wrong.
Build me a bridge, build me a bridge,
And please don't take too long.

Living on the edge of fear.
Voices echo like thunder in my ear.
See me hiding every day.
I'm just waiting for the fear to lift away.

I want so much to be a part of your world.
I want so much to break through.
And all I need is to have a bridge,
a bridge from me to you.
And I will be together with you forever,
and nothing can keep us apart.
If you build me a bridge, a tiny, little bridge
from my soul, down deep into your heart


Anonymous Kimmiek said...

I am so glad you and your chidlren have survived this and continue to thrive & survive each day witha wonderful Mom & step father, I do hope your ex is happy being a pig farmer..or poop scooper somewhere becausue I'd have made him eat his Nintendo games one by one for sure. You are a STRONG WOMAN! (no insult to actual pig farmers intended, only a stinking rotten sperm doners!)
Ps I love my husband :]
I dont' hate men. I am ashamed of men (and woman) who do not do right by their chidlren. God gave Megan you as her Mommy for some very obvious reasons.. I look forward to the rest of your story :}
hugs K

April 10, 2007 at 2:53 PM  

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