A family's story

Posts tagged ‘therapy’

Now, I know…

This afternoon Jake and Cole were swimming with our neighbor’s boy. They are two houses down from us, and they have one of those pools that you can put up for the summer, and then take down once the weather cools down. It’s the perfect type of pool for our kids’ age group..and for our climate. This arrangement worked well for all 3 boys. I couldn’t go with them, as I had to stay on premises while Tate did his ABA therapy. Our neighbor’s nanny was fine with the 2 boys playing there, but I popped outside to check on them occasionally.

The boys had been outside for almost 2 hours, and it had been about a half hour since my last check. I crept into the grass, and watched as the boys giggled and shouted at each other while they played some silly game. They were happy, and seemed content. As I walked back to the house, I caught the eye of my neighbor who lives in between our houses. She had her 2 kids outside playing with the sand and water table. Her children are 4 and *this close* to 2.

We said hello and waved. Since her daughter and Cole are about the same age, she asked if we had gotten into the preschool with the school district. I confirmed that we got our acceptance letter. She told me that she had decided to keep her daughter at the same school where she attended 3-year-old preschool. I totally understood. For my other 2 sons, switching preschools would have been difficult. However, Cole can handle the switch, and the benefits of the district-run program are plenty.

We chatted a bit, and I was saying how it’s such a different experience to have a child who is developmentally on track. She forced a laugh, and said that she wished she knew. I knew that her daughter had been through Early Intervention–in fact, her daughter had the same speech therapist that Tate still sees. Turns out, her daughter is doing OT for sensory processing disorder, and is in a group speech therapy. Also, a few months ago I noticed a flotilla of cars ascend upon her house. I recognized an SUV and a sedan–they were the same individuals who had evaluated Tate for speech and OT way back in 2008. (OMG–it’s been that long?!) Turns out her son is doing the trio of speech, OT & Developmental Therapy.

When she told me that he had all three, I felt a pang in my chest. Tate had all 3 once. Back then, I was glad they were helping him..figured it would get him on track by kindergarten. Now, I know. I asked how her son was doing. She sighed and said he’s not progressing much. His 6 month meeting is in a couple of weeks, and they are starting to suggest autism as a possibility. She tried to shrug it off, saying that he is *only* two. That shrug. That self-denial. The uneasy smile, trying to convince others, and yourself, that it’s not what you fear. Now, I know. Five years ago I was in her shoes, doing same thing. I told her that the evaluations for 2-year-olds can be done. She nodded.

She asked when we had gotten Tate’s diagnosis. I gulped. He was almost 5. She looked at me incredulously. She thought she remembered that he was diagnosed early. I explained…he was in early intervention when he turned 2. He did the entire Early Childhood program through our school district. Midway through his 3-year-old preschool year we were told he was the most impulsive child the teacher had ever seen. We were told she believed it was “neurological”. I had no idea what the sam-hell that meant back then…but now I know. Now, I know. Neurological = Autism. Neurological = ADHD. Neurological = Anxiety. I told her that one of the doctors we had seen assuaged our guilt–admitting that Tate was a “blurry” case. He had some classic signs of autism…and yet, in some other categories, he presented typically.

I talked about how I wished I had known that some of Tate’s behaviors were “classic” autism. His meltdowns. He didn’t tantrum…he melted down. Hard. The difficulty with transition. The rigidity to routine. The sensory disorder. The sensitivity. The speech delay. The echolalia. Oh, the echolalia. The non-imaginative play. The hanging on the perimeter. Now, I know.

She excused herself as she ran to pull her son out of harm’s way. And by harm’s way, I mean he was *this close* to being clobbered by Jake and the other neighbor boy, who were now swinging on our playset. Her son was totally oblivious. As I watched, I remembered how we used to almost giggle about Tate and his lack of awareness of his space-time continuum. He really did not have a good sense of his body and where it was in relation to others. Then I just thought he was clumsy. Now, I know.

I watched her son as he played around the other kids. There was a familiarity to it. I have seen “play” like that before. The flitting from activity to activity. The being part of the group–without being a part of the group. Flapping hands as excitement mounts. Yes, I have seen that before. Now, I know.

Eventually my neighbor excused herself as her children were getting tired and fussy. The boys in my yard were loud and chaotic and overstimulating. She didn’t have to explain anything…because, well, I know.

Editor’s Note: If she does find out her son is autistic, I will be there for her any way that I can. She apologized several times for “picking my brain”. I couldn’t emphasize enough how I don’t mind at all…and that I am happy to help in any way that I can. I wish I had someone back then to help me find my footing. I had to go it alone…and the feelings of isolation and despair that it was *just* us were overwhelming. I want to let all newly initiated to this community know they aren’t alone, that a diagnosis isn’t the end of the world, and that there is always hope. Because now, I know. 

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.

Alphabet Soup

Today we had an meeting with Tate’s team at school. They did a reevaluation based on his April diagnosis of Autism.

It was like a big pot of Alphabet Soup…we had an IEP meeting to discuss his eligibility changing from DD to ASD. The OT, SLP, SW, and S.E.C. (special education coordinator) were there. His teacher in the EC Kindergarten and the school psych were there, too. In addition to his current placement, we discussed next year (they recommend Instructional First Grade…aka self-contained), as well as ESY. He qualifies for that, too. Dang, sometimes I wish I had zero idea about what I just typed. However, after 3 years, I think we are becoming well-schooled in the topic of special education, therapy, and services.

Somewhat on topic….It kind of stings to read the IEP. There it is in black and white…all of our son’s deficits. All of his goals…many of which are things that come naturally to typically developing children. All of the needed verbal and visual prompts. All of the reiterations of how imperfect he is…at least in terms of typical development. The accommodations. Preferential seating. Special cusions. Extra time. “Special” bussing. (My kid is on the short bus. Thankfully they state it as “small bus.”) Harnesses. Sensory breaks. I know he will benefit from all of these, but still…

The one bright spot in the meeting….AND the part that made me cry, as we parents of children with Autism are wont to do at these things, is when Tate’s OT talked about the goals she has for him…but also stressed how.far.he.has.come. I could have hugged her. I did thank her. We see it..and it is just so great to hear others say it, too. Why? I don’t think I have to tell you, but, well, because it keeps the hope alive. The hope that one day Hubz and I will sit down and be able to watch our son live a productive, happy life.

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