A family's story

Posts tagged ‘Things that make me stronger’

That Stings

Overall our winter break has gone relatively smoothly. Tate is starting to fall apart, but we are all trying to help him make it through. Jake is doing a magnificent job of using his coping mechanisms to retain his composure and focus.  I am growing weary from the bickering and complaints of boredom, but overall, this break hasn’t been one of our worst, and for that, I am grateful. We have four days left before the boys head back to school, and I am confident that we will make it to that date without any major drama.

I had figured I’d wait to blog again until the boys were back in school. After all, Cole is refusing to nap while his brothers are home, and I don’t have my couple of hours to myself right now. I get ideas in my mind, but have no time to write anything concrete. I was content with my little blogging break, too. It was a nice little vacation. Then we got together with some friends last night, and a few statements were made, and I’m left feeling hurt. And how do I process hurt? I write…

We were sitting around our neighbor’s family room watching the Rose Bowl. None of us were totally vested in the game, but it was fun to watch and hang out..and to get out of the house for a bit. The kids were playing in the basement, and we adults had some time to talk, which was much needed. Between the 6 of us adults, there are 8 children. As parents are wont to do, we discussed the kids, and various situations, experiences, and the like.

Most of the conversation was light–fluffy. We talked about how cute the kids were when we have been the “guest” reader. We laughed about reactions to gifts at Christmas. We talked about our children’s personalities. We marveled at how different the children from the same parents can be.

At one point, my neighbor’s 2 and a half year old woke up from his nap and hung out around the adults while he woke up. We had just been over there on Saturday, but I swore that their son had grown again. We all remarked that his speech had exploded, too. My neighbor acknowledged it, as well. She said she had started looking into getting a speech/language evaluation..and then he started to talk. She said she was beyond relieved.

Then she said the words that stung.  “Yeah, I totally didn’t want that kid who is in therapy, ya know?” As she said it, she rolled her eyes for effect. I stared blankly ahead. I should have come back with something..anything…but I didn’t. I couldn’t believe it. She’s been very supportive and asks questions about our boys and their therapies. She seemed to be understanding when I asked to change carpool for a therapy appointment. She had remarked about our boys’ progress, too. I always thought she “got it”. But I guess not. The disdain with which she made her proclamation was clear. Hubz prickled at the statement as well. It was very clear that having a child with a disability is seen as a bother…an inconvenience. Ow. Just. Ow.

I am terrible with confrontation…and I am not always quick on my feet with witty comebacks. I left the room to check on my kids in the basement. They were all doing fairly well. Glad that they were holding their own, I went back upstairs and took a deep breath before joining the group again.

Later on, our friends were discussing how their daughters, both third graders, had a sleepover a day or so after Christmas. They were laughing about how “cute” it was that the girls were on their i-Pod touches talking to other friends and each other while they sat next to each other on the couch. They weren’t talking to each other, but were wrapped up in their devices, huddled on the couch together. I had to laugh at the irony. Hubz and I spend thousands of dollars on therapy and social groups for our boys each year to get them to communicate with peers face-to-face…and here are two neuro-typical girls whose parents think it’s “cute” that their daughters aren’t communicating directly with each other.

Sometimes I wish I was able to find technological isolation “cute”. But I can’t. In our world, when our boys get absorbed with technological devices and isolate themselves from others in the room, we have to encourage them to put the devices away and interact. We have to model social behavior for them. We have to use social stories to help our boys understand the importance of communicating with others.

I am probably being overly sensitive. I know that the comments were not made to make me feel like a bad parent..and weren’t directed at making a point about my children. However, it became very, very clear to me that people who don’t live in our world don’t understand that therapy isn’t an inconvenience. It is a necessity. And it is a lifeline. And it works.

I also realized that among my friends, whom I thought had a fairly decent awareness of the importance of therapy for children with delays, there still is a stigma associated with delays and disability. So, as I sit and lick my wounds…I have decided that my biggest resolution for 2013 is going to be to spread awareness and to get people to understand that a child with a delay or disability is not even close to a bother or inconvenience.  A disability makes my children different, yes…and that’s ok.

Seven Months

On April 8, 2011, we became official card-carrying members of the “Parents of Children with Autism Club”. The official word from the neuropsychologist confirmed what we had suspected for months…for years. And yet, it still was a gut-punch…as there was always the hope that I was just being dramatic, over-protective, and that Tate would grow out of this…

Our neuropsychologist asked if we had any questions. The only thing I could muster was to ask if “it was a good thing” that our son did share emotional reciprocity with family and close friends/teachers/therapists. She nodded. She also said something to the effect that Tate’s anxiety, ADHD, and sensory processing disorder contributed to his poor performance, and she thought that after some therapy (like ABA) he would perform more skills at-level. We are supposed to reevaluate in another year.

The “wait- and – see” approach hadn’t gotten us very far, so I sprung into action. We ruled out medical stuff. We saw a geneticist. (The Rx for blood draws for genetic testing sit in a folder. I know I need to go have it done, but taking Tate for a blood draw is no picnic.) We spent the summer fighting insurance to get ABA therapy covered…and won! We got Tate back into private OT, we worked with his team at school to rearrange his schedule to fit in therapy, we reworked his speech goals with his SLP to work on things where he was most deficient.

We got him into a pediatric psychologist. She agreed that he has off-the- charts ADHD, which is compounded by his high anxiety levels. The attention and focus are our first target to work on…and Tate is on meds. I am not too sure about this…we see slight improvements, but nothing life changing. But at least we have a plan.

With the plan comes the need for patience while we implement and adjust therapy and treatment to best serve Tate’s needs. And waiting for progress is the hardest part…We wait for the therapies to teach him proper pragmatic speech, to help him gain stronger motor skills, to help him cope, to help him survive this cruel world. We wait for the ABA therapy to help him choose more appropriate behaviors in general, and in response to his peers and the social demands put on him every.single.day. We wait for the right combination of medications to help him focus, attend, be present…to help control the impulsivity and fidgeting.

Tate has made impressive gains in the past 7 months. Many important foundation-building gains. So, we wait…and we hope…and while we have moments where we falter and go to that hard, dark, cold, unforgiving helpless place, the moments of hope lift us and keep us going in our journey, in our DUTY to give Tate, and his brothers, the best that life has to offer.

Tag Cloud

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