Sometimes I feel like in order to be a good mommy to an autistic child, I must zip off my skin and become a changeling. Let me explain. I am by nature a free spirit, easy going, let's all get along kind of a gal. I would much rather write a song or a poem about my problems than confronting them head on. I hate conflict and details are too numerous and talk too loudly, they are like a constant buzzing that won't go away. I don't know why I have never been able to fit everything into nice little squares of organization all labeled and color coded. I do see the advantages of such things, but it leave so little room for the imagination and it makes my skin crawl to have everything so well defined....I mean where is the surprise in all that organization.
Not to knock it....it seems I am in need of a lesson or two in this department. It is a re-occurring theme in my life since autism has been sleeping on a plush little fairy bed at my house.
I have recently been reminded of my need to become something I am not for the good of my daughter. This assuming that everyone must have my best interest at heart is making a fool of me and getting my daughter nowhere fast. But honestly, do I have to be on top of every person working with my Scarlet just to ensure that they are moving in her best interest? As it is now, I need to hire a personal secretary just to keep up with the schedules involved. Let me just list, and I am probably getting some of these wrong because it has all changed since Scarlet has started school. First there is CASC who supervises the Occupational Therapist who sometimes makes an appearance at Scarlet's school and writes notes that I am sent in the mail and then responsible for getting to the Principal. She is with an organization called Closing the Gap. She is a wonderful lady who has ordered equipment for Scarlet's occupational therapy needs at school. This equipment has yet to arrive because I was unaware that all the documentation needed to get said equipment was not in place (rather had been lost). It is now my responsibility to hound the school and the organization until this equipment shows up.
Then there is the Children's Treatment Network who oversees the speech therapist who works out of the speak freely clinic. They are in charge of how far Scarlet can go in her augmentative communication world. I am supposed to be very familiar with their forms and checklist for augmentative communication devices (voice output device like Scarlet uses) so that at the time that Scarlet starts growing beyond their devices I can advocate for her to be sent on to a place called Bloorview who has higher tech options. I am supposed to frequently make my voice heard and be an integral part in all the goal setting and reaching in this area. This means that I need to learn a new computer program, get a password for their website, be very familiar with forms which they may or may not inform me of, and be a constant source of inspiration for my daughter who is learning to use these devices. There are meetings at the school with my speech therapist that I would like to be present for. I must work these into my schedule.
The school has frequent meetings about Scarlet's Individualized Education Plan, which I must also be involved with. I have to stay on top of the goals set and the implementation of these goals to assure that Scarlet is getting the most out of her school experience and not being underestimated. I must say, that Scarlet has a darling of a teacher who is quite eager and wonderful... thank you, Jesus.
Then there is the matter of getting and maintaining funding for IBI. Right now, people have so generously given to us and we have never been without. However, we have been on a wait list for at least three years with Kinark, a government organization that is responsible for eventually funding our IBI program. I am supposed to frequently call them and make sure that Scarlet is maintaining her spot on the wait list. They need to know that I am making some noise for my daughter so I don't get lost in the sea of other noisy parents. Scarlet is currently number 22 on the wait list. Last year in January she was number 42. This means another year before funding is available at which time I will have to advocate yet again to have the funding provided to the IBI therapists that have already worked wonders for my daughter, but are not part of the Kinark organization.
Did I mention that Scarlet is also without a permanent EA. Now I must frequently correspond with the school as they look for another suitable match for her. I have had to forgo potty training with her because any headway I was making at home was all reversed at school because she is not comfortable with strangers taking her to the washroom and it has been hard to have a consistent person taking care of her. In addition, Scarlet has been placed on a new restrictive diet because her last trip to the doctor showed that her gut was under disrepair again. This, while being a worthwhile venture, requires a huge learning curve and, yet again quite a bit of organization. Brynn and Skye... oh yes, I do have other children.
I am just tired throwing all this out into e space. I thought today as my stomach was feeling queasy that maybe I need to learn how to actually run at a problem head on, fists clenched while placing all the contingency plans into file folders that fit neatly into my super autism mom costume. Maybe I could reach in and find my inner Nancy Drew. It all sounds great, but I am already missing the flower child. I know that God is always forcing us out of our comfort zones, I think that I am definitely itching right now. I know it will be better for me if I can learn to be more organized. I know that learning how to push a little instead of taking no for an answer will be a good lesson too. I am just going to need a little supernatural strength. So for all you praying people out there.... say a little one for me tonight.
Thanks (all neatly sealed in a homemade card)
Angela
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