A family's story

Posts tagged ‘Perspective’

A glimpse into my kids’ lives

Tomorrow Hubz and I have a holiday party. A couple with whom we’ve been friends for years has an annual holiday party for grown-ups only…and it is a great night out. Except that the few days leading up to said event gives me the worst social anxiety. Like, I already have butterflies in my stomach, and I can hear my heartbeat in my ears when I think too much about going to said party. I know that once I am there I will get more comfortable, and that we’ll enjoy catching up with our friends…but it’s the waiting…where all of the what-ifs and insecurities play out in my head…that is almost painful, sometimes.

I am, to my knowledge, neuro-typical. I know that I am experiencing anxiety, and that the anxiety is actually worse than the act of attending the party. To keep the anxiety at bay, I focus on how I feel when I’m at the party…how it is enjoyable to see old friends, how it is always interesting to hear about what is going on with others’ lives. I can separate the two…the anxiety and the party. I talk myself down from the ledge. I focus on the positives. I try not to dwell on the pit in my stomach. I practice my party scripts in my head. (We all have scripts, you know.) 

This year, said party has an “Ugly Sweater” theme. I have to go to Goodwill and Walmart today to see if I can find some hideousness for the party. I get another pit in my stomach. I know Goodwill will likely be cheaper..and who wants to spend a lot of money on something that is a gimmick. But my sensory disorder starts to give me some anxiety… what if the sweater is itchy? What if it makes me too hot? What if it smells funny? What if I can’t find anything and have to go to the party in the current trendy non-tacky sweaters I have, but I win anyway…what if I’m tacky?! (See, the anxiety creeps back in…)

Again, I know that I’ll be able to make a rough attempt at humor over my attire…and that my friends will laugh. And no one will care. We’ll talk about work, about our kids, about the chaos that is the holiday season. We’ll eat, we’ll drink, and we’ll laugh. There’s always loads of laughter at this party…and that is good for the soul. And with that, I start to look forward to the party again.

As I grapple with  my social anxiety, and my sensory disorder, and the anxiety that the sensory disorder brings, too (such as the loudness of the party, the temperature…too hot..too cold, the amount of people crammed into one space (and the fact that I’m at armpit level), the smells, the perfume and cologne that people insist upon wearing but is a huge assault to my sense of smell), I am smacked upside the head by the realization that my boys, in particular, Tate, deal with this stuff every.single.day. And he isn’t always able to rationalize his anxiety away…he hasn’t totally pinpointed the causes for his anxiety…yet. He gets bombarded every day…no wonder the kid is on high-alert and has a melt-down. I know that when I get into the car after the party, I need that hour drive home to just totally decompress.

I can’t imagine having this feeling all of the time. It would be debilitating. It would be overwhelming…and again, I am reminded of how amazing my kids are, too. They struggle with these disorders daily. They have to work through the anxiety, the social awkwardness, the sensory disorders, just to make it through a day. Not a once-a-year party…but every day of the year. I have such respect for my kids…because they do handle it. Not always perfectly, but they are able to function. They get out of bed. They go through a routine. They use the scripts they have been provided…and they make it through.

Pretty impressive for a couple of kids who are developmentally behind peers, don’t you think? I say it so often, but Tate and Jake…they are my heroes. They teach me how to be a better person. How to be a better mom. Being their parent has given me such a deep perspective that I never used to have…and I am grateful.

 

The Grass Isn’t Always Greener

In January, three of the boys who had been in Tate’s Instructional Kindergarten class were moved to regular education classrooms. I don’t know much about one of the boys, but the other 2 were still receiving a few services via updated IEPs. When I ran into Geo’s mom (Geo was in Tate’s class), she was nervous, but said that the team was confident that Geo was going to be ok in a classroom of 23 kindergarteners. Geo would continue to receive speech services, but his other services were being cut. He was going full-mainstream without an aide. The classroom did not have an aide, so there were 23 students to one teacher. She said she wasn’t so sure, but well, they were the “experts”.

Last week, we had Geo over for an ABA-therapist-assisted play date. I figured it was a great way for Tate to play with a friend whom he hadn’t seen in a while. Also, since Geo had been mainstreamed (oh, what a dream!), I figured he had made significant gains and would be a good role model. When I had extended the invite, I asked about Geo, but his mom didn’t say much.

Geo arrived with his mom. Geo, making very fleeting eye-contact, blurted out a few questions about Tate’s whereabouts. I directed him to the basement where Tate and his therapist were waiting. Geo did not say goodbye to his mom or to me. He just flew downstairs, shouting for Tate.

Geo’s mom thanked me for having Geo, saying that he really was excited to play with his old friend. She hesitated, and then dove into a conversation with this statement, “So, have you seen benefits to having an Autism diagnosis?” Uh, er, um… I must have looked stunned, because she apologized for blind-siding me. I told her no apologies were necessary.   I said while the diagnosis was hard to hear, we had suspected it, and since we started ABA, Tate’s progress has been amazing. Short answer: yes.

She asked if we are glad that Tate will be in Instructional First Grade. That is a mixed bag…but mostly, I answered, yes, for him, it is necessary. He still struggles in the larger groups, so he needs that space with fewer children and 3 adults to be able to work well in a school. She looked wistful. She then said that she wished that Geo had not been mainstreamed. Without the smaller class, and all of the supports that he had in place while in Instructional Kindergarten, Geo really struggled. His social skills declined. His academics declined. He started to shut down. All of that progress…gone.

She is dreading first grade for Geo. They are waiting to get him evaluated by a pediatric neurologist.  She hopes that with an outside evaluation, they can get (at the least) some more services in place in the regular-ed classrooms. She said she wants him to enjoy school again, and not be sitting in the corner, with his back to the class, hands over his ears, shutting it all out. That statement made my heart ache.

The boys had a great play date. Tate was squealing with delight. He was trying to get Geo’s attention. They were laughing. When Tate’s therapist brought them upstairs so Geo could prepare to go home, she looked exhausted. She commented on their high energy. Geo’s mom came, and asked how it went. From my point-of-view, it went well. The boys played together and really ENJOYED each other’s company. Tate’s therapist gave a more professional synopsis.

She had tried to engage the boys in a more sedentary activity first, because Tate had been working on some writing programs. He was interested in Play-doh. Unfortunately, Geo was unable to attend long enough to play. Noticing Geo’s need for input, Tate’s therapist set up the obstacle course that they use for Tate’s gross motor program. Even with running the course several times, Geo still was seeking input.

Geo’s mom was grateful that Tate’s therapist was able to give a professional opinion. We discussed setting up another play date in a couple of weeks. Tate was actually excited about that. Yes, my kid, the one with social issues,HE wanted to play with his friend again. Oh-em-gee…that is heaven!

This play date helped me realize that the grass is not always greener. Hubz and I really would love for Tate to be in a regular-ed classroom.  I was a bit  jealous of those boys who got mainstreamed in January…I so wanted that for Tate. At that time I knew that it would have been detrimental, of course, but still…a regular ed classroom. That’s the “promised land”.

Now that I’ve heard this downside to mainstream-land, I am so much more aware of what can go wrong when children are plucked too early and transplanted without all of the right tools. For me, it was a reminder to stay the course. To fight for Tate’s rights. To fight for services and an appropriate IEP. Geo’s mom said that this has been quite the lesson on being her son’s advocate. She’s ready to battle. I let her know that I am always willing to talk, to share ideas, to listen. No one should have to go through this alone.

That’s Better

Memorial Day Weekend 2012 kicked Memorial Day Weekend 2011’s butt. In so many ways.

First, we didn’t have to do a 48-hour EEG. Anyone who has had to endure one of these knows the pure hell it truly is. I can think of fewer procedures that were more painful for us. Between the sensory hell for Tate and the heartache I had as I had to essentially sit on him while he pleaded, through tears, to make it stop, I was “over” the experience before it even began. This year, we had no major plans and spent oodles of time outside enjoying the early heat and water play.

Second, we got sleep. See above…I challenge anyone with wires and a battery pack on their waist to “sleep as you typically would”. Baloney.  That was 2011. 2012 brought sleepovers in the basement with Hubz and actual sleep for all 5 of us. It was glorious.

Thirdly, Tate watched our Memorial Day parade. He danced while the high school band played. No, wait. He OWNED IT.  He pointed out Jake’s Cub Scout Pack. He waved to his brother and made sure that I saw Jake, too! This was sooooo much better than 2011 when he hid under a pine tree until the whole thing was over. Soo much better.

Fourthly, we had a bbq with Hubz’s family. The kids played quite well together. Our nephew and niece were engaging Tate, and he played with them. Jake and our nephew played, while Cole tried to keep up with them. (And he amazingly did…for most of the afternoon.) Tate immersed himself in the water..and was in his element. Last year, Tate struggled as he fed off of my unease during a family bbq where my dad introduced one of my sisters to his girlfriend. As Jake would now say, “awk-ward!”

Finally, in 2011 we were days away from the end of school with no real plan for Tate besides ESY and continued PT & speech. This year, we have a rock-solid foundation for the summer. We know that we may need to adjust throughout the next 12.5 weeks, but Tate will be getting the therapy and socialization that he needs to continue to make gains. We see where he was….and see where he is…and it is so inspiring. It gives us hope for so much more.

So, yeah, 2011 can suck it. 2012 has been a huge improvement!

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