With that being said, I'm going to focus right now on the positive highlights of our meeting. The moment that I was brought to tears listening to how special my daughter is to her teacher and aides and how they truly love and adore my little girl. It makes leaving her a little easier knowing she's in excellent hands. Would I be saying the same if Belle wasn't in "Special Ed" ? I don't know. We discussed Autumn's progression and how far she's come since the beginning of the school year. The teacher listened to my woes and how difficult it's been to let her go. She responded to my concerns with such compassion. I couldn't be more grateful for her words.
Now onto the "negative" part of the meeting: the topic of "full day" came up again. Apparently Autumn isn't progressing as fast as they "like to see". She's moving forward, but not up to "their expectations". Well more like not up to the BCBA expectations. I'm not going to lie, it pissed me off hearing this again. Since I have a good relationship with her teacher, my frankness came pouring out like tears. I informed her that we have her in outside therapies four times a week and despite her not being at school, we do lunch and out the door again for therapy. Are days are full. Plus, she LOVES her therapists and looks forward to going to see them. I also said this and rightfully, she agreed:
"Imagine having to leave your house at 8:30am not to return until 4pm at the ripe age of three?" That's a long day for an adult or any typically developing child, so why this for a "special needs" child?
I went on and on about the appropriate use of ABA within our home, how I pick the activities she'll enjoy and that she leads me; I don't push and push and push her over the threshold because I don't want her love for something, such as learning, be jaded. I informed her teacher that Autumn loves school and her therapies and perhaps she could handle the full day, I just don't want that experience to take away from the joys of school that she has developed at this point within her life.
Lastly, I love being home and present for my daughter. It has been quite the adjustment to leave her and go work with my little kids for the few hours I do. I miss her and look forward to picking her up daily and spending our afternoons together, whether within her therapy sessions and when were home. The past three years have flown by and I hate this so much. I hate that my baby is growing too fast for my liking. I hate that she's already at an elementary school doing things that my friends kindergarteners are doing. I hate that I feel like the past 18 months have been consumed with therapies and doctors appointments and ELAPs to IEPs. This wasn't the life I had imagined for my little family, especially for her. I hate that there's so much pressure on her and that I've been the biggest contributor to this "push" to "normalize her. How freaking selfish is that? I think about this pressure and if it's bad for her, how much more would be "expected" if she was NT? I think to myself how we put so much strain onto all of our children and we wonder why screwed up shit occurs. We wonder why half of Americans are on meds for physical and mental stress. We wonder why therapists like myself will NEVER be out of business because of these expectations that we choose to put within this heirachal latter, that "becoming someone important" is more valuable than kindness. That a career "defines us" rather than our life choices and "what we do" to make a life for ourselves is seen as ideal, even if it means hurting those to climb up that "latter of success".
Often I ask myself, what the heck is so wrong that she's "different"? What's so horrible about autism that people fear it, stigmatize it, and feel awful about talking about autism like it's the huge elephant in the room? That it's something shameful and should be kept away from the world. That there are idiots out there who choose to not of have their children vaccinated because of "fears of autism"? How effed up does that sound when autism is now being thrown into a life-threatening disease pile or seen as "cancer". This angers me so much can't even go there anymore. Granted, I know that autism can be very draining and hinder families, but there's something beautiful about my daughter's autism. Hers and hers alone.
Maybe the above is just my ploy of feeling a little burned out from hearing the same ole "she needs to do more" mantra. Or maybe I just don't want her to change certain aspects about herself that make her special and unique that her autism has caused. That innocence and love for all things that I know this cruel world would've and will ruin for her if she becomes "typically developing" like it did for the rest of us. Then again, I don't want her to be blinded from reality as well. This will be the balancing act that I'm sure well work through as she gets older.
Overall, I'm honored that her school sees so much potential within my daughter. That she's been their little "project" of what successful tools utilized at such an early age can do for a child on the spectrum, but stop with the constant push. Stop it. I would be speaking the same tone if she wasn't on the spectrum. Kids need to be kids and parents need to be parents and enjoy phases of life together as life is too precious and short. Plus, at the end of the day she's three. Yes I know, I say this often as if it's my crutch, but it's the truth. Like my husband stated last night, "what's next, she'll have to memorize the Greek alphabet at four?". Because from the looks at what they want her to do, even most typically developing kids aren't expected to do those things "eighty percent of the time". Like the tortoise, she may be moving slow, but she will get there. She WILL. I've seen it and continue to see it and believe it.
Thus, the teacher appreciated my words. I told her that I will be in contact with the BCBA and school psychologist informing them to stop pushing the full day onto us right now. Maybe next year, but it isn't happening this year. Done and done. I hope they respect my wishes otherwise, in my husbands words, she'll be pulled out if they don't stop with their "unrealistic expectations".
I know that her language sucks compared to her peers, but it was only a short 16 months ago that it took her over 45 minutes to say the word "milk" after working and working with her and having our "break through". That this time last year she finally started to acknowledge Leah, that six months ago, her daddy and her truly started to bond over Frozen and popcorn, that her language has "blown up" to the point that she no longer needs pecs to assist. That her sensory system is much more regulated that shopping with her has become easier, that she greets everyone and looks right at people, etc.,. The list goes on and on. Things we've been working with her on for a long time. So feeling like we've been discredited is an understatement, which explains my emotions throughout this post. And it hurts. Period. But I know that I have the power to choose how I feel and I won't feel discredited or "less" bc my daughter isn't doing things on their terms. I know she's worked hard and I couldn't be prouder of my Belle. Here's to climbing this mountain together. All of us, together.
Okay, I think I'm done for now. Happy Friday all.
Xoxo,
Trish
