Tuesday, July 22, 2014

What IS Forever?

So yesterday I updated you all on how fantastic Autumn has been doing and on my new job opportunity working for Early Intervention services once she starts school. I was feeling FANTASTIC then poof, that changed as soon as I started to read her evaluations from her new SLP and OT. 

Within the past month, Autumn has had three discharge summaries, two Battelle evals, one OT eval for school, two evals at the clinic, an IEP and an eval for the VB-MAPP (verbal-behavioral milestones assessment performance program). Ten meetings that I've had to disclose the same words over and over again. Ten meetings where her "limitations" have been noted. Ten meetings to remind me, shit, this is real. Her Autism IS real. 

I know that my posts lately have been filled with rainbows and butterflies prancing around in the glorious sunlight, depicting hope and remaining focused on "the good" within my daughter. Not on just the negative aspects or the realities that could quite possibly be "her forever", "our forever".  It's a feeling that I've chosen to dominate my mind but the other still lingers there so quietly and that, my friends, is today's focus.

Now reading the reports, always subjective to an extent, made me very upset because it listed her social skills at being of a six month old. Wait, six month olds have social skills? I just assumed most babies that age were just learning how to sit up and coo at this point. I am extremely pissed by this and will be saying something today when we go back. To make a judgment off of five minutes of her going from toy to toy because she's excited, which I already mentioned prior to our arrival, just ticked me off. She scored the highest in social/emotional at the school and within the ELAP so explain this to me? Hopefully a typo error. I'll just approach it like that... 
*** UPDATE: I did confront her SLP today to ask her where/how she determined her findings and I think I probably made her cry...totally not my intention. Just didn't understand how her scores elsewhere were much more higher yet hers was so low. I told her everything I've mentioned here and I think and hope she agreed and was empathetic and understanding about. We will see how next week goes and if I still feel similar, then I will look at another place to take Autumn for speech (theres other things that bother me but I'm choosing not to mention here).

I know that I should just take their wordings with a grain of salt and keep moving forward like I always do, but I can't help but wonder AND worry about Autumn's future within this moment when I promised myself I wouldn't try to think too far ahead. The realities are there. Dang it. I seriously thought I'd be immune to these feelings, but I'm not. Watching some Autism documentaries this past week also amplified some of my concerns. I guess these "worries" have to keep me grounded and not so much in la-la land hoping that she is going to truly climb out that window and be a typical child someday, even though anything is possible (here I go being that internal optimist again). It also has made me realize, and maybe it's just the feelings of being burned out from evals and meetings this past month, how I dislike this all and just wish we had a normal, uneventful life. Not this running around all over the place, hearing everyone's subjective opinions about my child and feeling like you and you alone are the only one in the battlefield, advocating for your child and doing the best you can with minimal support.

I will tell you all this much. All of these opinions and subjections surely knock one off their horse from thinking that their kid "is the best" in life. Man oh man, having a special needs child of any sort really does ground parents and teaches us to focus on what our child can do, even though what they're not doing is a constant discussion and motivator. So I add to my list of "what my autistic child has taught me" and this probably summarizes this entire post/rant: It sucks, and yes I said sucks, hearing about how "un-perfect" my child is and how she has these so-called limitations and how she isn't "the best" bc she is "special" but "special" because of those limitations. I hate being critiqued. I hate hearing where I need to improve as a parent mainly because I'm not her only parent and feel that the other one gets off square cleaned. I hate it bc I don't like criticism and never had and feel like it's "all on me". It's a huge pill that I choke on constantly and this, my friends, is the biggest dilmemna that I've had to overcome or try my best to not take so personally. This, my friends, is MY biggest struggle that I fight daily and will continue to fight. I am sure I will just lol at it all and grow numb to it as I hear more and more about "improvements" Yada Yada Yada...

Now as for Autumn's forever? Who knows. Like I said previously, I can't think about next week, let alone "her future", which isn't probably very smart but it's my way of coping with the present moment. Even if this sounds naive and after my ranting and stating the annoyances above, I'm going to go back to thinking that everything is "rainbows and butterflies" today. I'm not going to allow the dark thoughts consume me or make me feel like a crappy parent. I'm not going to allow subjections rule my outlook on my beautiful daughter, despite what they think or say. I'm going to choose to see differently and even if it pisses people off that I choose hope. To hell with them as I smile and try my best to enjoy Autumn being Autumn. 

Here's Autumn being Autumn squashed between her teddy bear and chair:

Funny way to conclude. Yesterday were Autumn's first sessions at the clinic. Her OT comes out and says, "goodness, I don't know how mom you do it bc Autumn is intense within needing those deep pressure and lots of input." Yup, that's my kid. Hopefully the more and more she becomes regulated, the less input she'll need. However, I'm certain the hugs won't stop. 😉 

Xoxo,

Trish 


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