A family's story

Posts tagged ‘special needs siblings’

Well Aware

I didn’t post yesterday. Quite honestly, I am not sure what I can say about autism and awareness and acceptance that hasn’t already been said. I mean, with the rate at which children are being diagnosed with autism spectrum disorders, many of us know of and are well aware of autism. It is everywhere.

Our school has a big bulletin board up at the front of the school. In big bold letters it proclaims, “April is Autism Awareness Month”. The school social worker, who has the biggest heart and a very personal connection to autism, put it up. I like that there’s something up there. I noticed several kiddos in the school were wearing blue yesterday. A few had various “Team _________” shirts on to support loved ones or family friends. So, I do think that the school community is aware.

Now that everyone is aware of autism, I think we need to work on letting those with autism advocate for themselves. I am obviously still advocating for Tate, and will always do what is needed to get him what he needs to succeed. However, I am trying not to speak for him and do everything for him. I’m letting him take the lead a bit more.

At home, lately, when Jake or Cole ask me why Tate is doing something that is seemingly odd, or maybe even annoying to his brothers, I have stopped answering for him. Instead, I ask them to ask Tate. Tate knows why he does things better than I do. For instance, yesterday he was whining in the van. We call it “perma-whine”. It usually happens when he’s worn out and/or hungry. Cole kept asking me why Tate was “crying like that”. I told him to ask Tate. So, Cole did. Tate said, “Cole, I hungry. Soooo very hungry.” And we were on our way to Culvers for a take-out treat, so it made perfect sense. He’d been at school all day, did 3 hours of therapy, and then we visited the library. He was plain old starving by the time we got our food!!

Jake had a musical concert a few weeks ago. We sat in the back row, ready to make an escape, if needed. Tate got a little antsy. Then a little whiny, and then a little oppositional. I know he was trying to find his calm, but it just wasn’t working. Hubz took him out into the hallway at one point, even though Tate said he didn’t want to go. After about 2 minutes, they were back, and Tate was able to watch the musical for a bit. Suddenly, he looked at me and said, “I, I, I need to get out of here. I need to go….I need to go pee.” We quietly left the gym and walked to the bathroom. He used it and came out. He was visibly calmer and more regulated. He just needed to move. So we hung out in the hallway with the toddlers who also needed some sensory breaks. We walked past his classroom. He showed me his locker. We made it back to the gym for the finale of the show. No tears. No shouting. No meltdowns.

This morning we were sitting around waking up and eating breakfast. It was raining outside, and it got a little windy. There was a flash of lightening. Then, obviously, thunder clapped. Tate ran into the kitchen where I was reading the paper. “I’m gonna, gonna….gonna be sick.” It’s a script of his. Often, it means that he’s anxious. He gets, I assume, that fluttery feeling in his tummy. I looked at him, and as we shared a gaze, I told him that he wasn’t going to be sick. I thought he might be anxious…worried…about the thunder. “Yes!” I assured him that he was safe inside. He asked if it was going to rain during the day. Our forecast is for rain on and off throughout the day. I told him as much. “But no thunder, right, Mom?” I explained that there could be thunder, but most likely it was just going to be rain…with maybe a little thunder here and there. I reiterated that he’d be safe in the house, on the bus, and in school. “Okay, Mom. But I sleep with you if there’s thunder tonight.” (Oh, boy…)

So, I guess that this month, since we are both aware and accepting of Tate and his neurology, we’re going to approach this as Autism Advocacy Month. Tate’s language skills have blossomed tremendously lately. Why not let him practice the skills he has worked so hard to gain? Yeah…Autism Advocacy month.  I like the ring of that.

Brothers…

Editor’s note: I meant to publish this sooner, but an unfortunate tummy bug took control of my life for a few days….enjoy.

Shortly after Tate was born, there was a commercial for ESPN with the Manning brothers. All five of the Mannings were touring the offices. Archie and Olivia Manning are in the lead, very interested in the tour. Cooper Manning, the eldest, is right behind his parents. Lagging behind, Peyton and Eli are kicking and jabbing at each other…like brothers tend to do. Hubz and I watched the commercial, amused, and joked about how that would be our boys some day.

Of course, that is before the delays were painfully apparent. Before autism and ADHD diagnoses. And before we realized how different our family dynamic would be. It’s not wrong or bad…just different. Admittedly, after we found out about Tate’s autism, I mourned that he and his brothers would not have a “typical” sibling relationship–complete with rivalry, bickering, and secret moments that only they would “get”. I was stuck on that whole “social isolation” component of autism. It made my heart ache.

Luckily, our boys have always had a pretty good relationship. Different, yes, but they have always had some connection. As Tate has made gains over the past two years, the bonds have only strengthened. So, while our boys do have a slightly a-typical relationship with each other, there is so much typical in there that it makes me smile.

For instance,Tate and Jake giggle and chat in their room each morning before they emerge. They have inside jokes. They share glances and giggle. Yes. I said it. They share glances!!

Tate is a stereotypical middle child. He loves to instigate, prod, and tease. He also tends to feel, quite strongly, when one of his brothers is sad or hurt. He is usually the first to ask about their issue/problem, and is often quick to offer a tap on the shoulder. This tap is a huge thing for Tate…and it’s his way of connecting.

Tate and Cole share banter…a lot. They bicker, they shove, and they jab at each other. And often, they end up giggling together afterwards. As much as it does annoy me, I admit that it  is somewhat comforting, as well. I love that my boys, even with all of their “shtuff”, connect. That connection is going to be important as they get older…

Last Saturday Tate had a soccer game. It was his first one of the spring season. As we walked back to the car afterwards, Jake put his arm around Tate’s shoulder. They were sharing a moment..and then it became a headlock, with Tate shrieking with laughter. He kicked his leg at Jake, playfully. Jake playfully shoved him aside. Hubz and I looked at each other…and knew, just knew….it was going to be all right. 

The Siblings…

There is a little boy in Cole’s preschool class who still struggles with separation from his mom. On many days that he attends class, his eyes are rimmed with red from crying. He looks miserable. Cole often tells me that this child cried during class. Or that this child is “sad”. (In Cole speak, that probably means that the child is having a meltdown.) I haven’t ever been able to talk to this child’s mom about how I “get it”, as she’s always busy reassuring us parents that she’s ok, he’s ok, and that it’s just a rough morning. 

Last week, this child was having another bad morning. He was crying at drop-off. His mom looked as frazzled as he did. I asked if I could help. Another mom, who seems to know them better, asked as well. She politely declined. I smiled and wished her good luck…and threw in, “I get it…” She looked at me with slight disbelief. She has no idea about Tate…she only knows Cole…the most “typical” of our lot.

Apparently, the crying from drop-off continued through the morning. Many of the children were watching this child as he cried and sobbed during the letter of week time. Cole went about his morning routine as best as he could, and according to his teachers, didn’t give the child who was melting down too much attention. As one activity transitioned to another, the kids had some play time.  Cole scampered over to the play area and started to rummage around the bins.

His teacher said that he found what he was looking for–a stop sign. He walked up to her and said, “Can we tell _____ that it’s time to stop (points to the stop sign)–stop the crying. He needs to use words to tell us what he needs.” She said she was flabbergasted. Before she could give Cole an answer, Cole approached the boy. “_____, use your words to tell us what’s wrong.” Cole showed the boy the stop sign. The boy stopped crying. He was surprised that Cole said something. But he stopped. Cole invited the boy to play with him. The boy said no, but the meltdown was over. Cole went about his playtime.

When Cole’s teacher told me about the day’s events, she said that he was never rude or harsh. He didn’t bully. He was simply trying to help the boy who was having such a rough time at school. She couldn’t believe his method for coping with the issue, either. I told Cole’s teacher about Tate, and how Cole is accustomed to dealing with an autistic brother. This is what Cole knows. She then told me that the backstory of Tate’s autism explains a lot…she went on to say that Cole is more tolerant, more kind, more compassionate than the average kids in her class. She said he has patience and is often the first to try to comfort an upset peer. (COLE?! Our resident instigator?!)

I often worry about how our family’s experience with Autism will affect Cole and Jake. I worry that they’ll feel neglected. That they’ll feel slighted. That they’ll feel like they are less loved. I worry that they’ll act up–or out. That they’ll seek attention because they don’t feel like they get enough at home. I worry that they’ll be nasty to children who struggle.

After hearing about Cole’s experience at school, and knowing what I know about Jake, I am confident that, if anything, living with autism has given my boys perspective. It’s given them compassion–even Cole at 3.5 years old. Instead of staring, Cole went on with his day. Instead of making a production about the disruption, Cole tried to find a way to cope with it. Instead of judging, Cole tried to calm the boy and asked him to play.

This gives me hope that our boys will use the tools they have been given and will build upon them as they mature…and that the experiences with their brother will make them better men. More understanding. More compassionate. More patient. More empathetic. Just…More.

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