A family's story

Posts tagged ‘Struggles’

The Gaps..and the Hard Place

I know I also haven’t written as much lately because, well, my boys are getting older, and I just don’t know how much I should share. I hear this sentiment echoed often through the blogosphere…I do hope that my boys know how much I love them and how much my writing is a catharsis for me.

I decided to write today because I am struggling to process through the events of this morning, and I just need to work out MY feelings.

Our school always does a breakfast for veterans. It is well done, and teaches the students about sacrifices that our veterans have made for our country. The third graders are responsible for putting together the event. Well, the teachers and a few of the third grade parents plan it. The kids make crafts and invite veterans and sit with the veterans during breakfast. The rest of us moms and dads volunteer and serve the veterans and kids, and help them in their endeavors.

We had prepped Tate for today. I did a little social story. His teacher sent home the songs that would be sung. I showed him pictures from the Veterans’ Breakfast that Jake’s class put on a couple years ago. He knew that I would be there helping out, and that my dad, Grandpa, would be there, too.

Tate started out just fine. He sat with his Grandpa and with some other students from the class that he pushes into. Then he started to look for me. I was out directing guests to the right location. One of the aides came to get me so that Tate could say hi to me. We walked in, and Tate ran up and gave me the biggest hug and hugest smile. We talked about how I was going to help, and how he had to go sit with Grandpa. He went back and sat with my dad.

At first, everything was just fine. The veterans mingled with the children. We parents walked around, offering refills of juice, coffee, water, and fruit and pastries. Tate happily sat by my dad and talked to him. He started to stim with a spoon. He came up to find me. I assured him that all was well, even though I could hear the voices getting louder, and the commotion started to increase.

Tate sat beautifully through a VFW representative’s speech. He kept stimming, but he was seated. Then, people started to move around. Parent volunteers started to roam the aisles to get pictures of their kids with their invited veterans, or pictures of them with their child. Tate is in a no picture phase, so I knew that when I asked he would politely turn me down. “No thanks, Mommy.” I snuck in a few but they weren’t the greatest quality.

The noise in the gym started to increase. The screech of the chairs. The talking over one another. Peals of laughter. Shrieks of delight. Little by little the noise increased as the time dragged on. It started getting warmer in the gym, too. Some adults took off their sweaters or their vests. Some removed jackets. The third graders were starting to roam around and find their friends.

During this time Tate got up and posed for a picture with some of his classmates. He really struggled to do it, because, like I said, he is in a no picture phase. But his beloved girl classmates were asking him to join them, so he did. Then they were starting to get silly and do girly things. It was clear that Tate was no longer a part of their interaction. I asked Tate to sit down. He did, begrudgingly. He wanted to be with his girls.

One of the girls told him he couldn’t sit by them, because he isn’t in that classroom. He got flustered. He really struggles when it comes to handling his emotions of disappointment or embarrassment. He was so disappointed. He threw a spoon in her general direction. When I asked him to calm down, he said, “sorry, mommy”. I tried to explain that the girls were with their class, and wanted to be together..and that he could come talk to the boys. He didn’t want any of that.

Then, well, one of his beloved girls came back to him and asked why he was yelling at his mom. He lost it. He pawed at her. I pulled him aside and asked him to calm down. He laid on the floor. One of his aides came by and we got him into the hall, the hallway where it should have been quiet, but unfortunately, the 2nd grade was getting their coats to go outside for gym class. He wasn’t getting his quiet escape, so he asked to go back in the gym.

As we entered the gym, the girls came by him again. This time, he hit at his beloved girl a little harder. I was gobsmacked. I reacted, maybe not as I should have, but I told him he needed to calm down and keep his hands to himself. I directed him to his seat. I forced him to sit down. He started to call me stupid. Then he threw another utensil in his beloved girl’s direction. One of the regular ed teachers tried to step in and reprimanded him. That did no good. He started to fake wail. He was losing his shtuff.

His teacher came to the rescue. As he was whining out of frustration, she walked up calmly and asked if he’d like to go do a break in the classroom. He said no. He stood up and called his beloved girl stupid again. Tate’s teacher knew he didn’t mean it…she knew that he was just frustrated…and embarrassed…and overloaded. So she told him that he had a choice. He could do a break in her classroom or go get a drink of water so he could calm down. He chose the classroom, and they were off.

As they exited the gym, the third graders lined up to sing their songs for the veterans. Tate SHOULD have been there. THe singing is his favorite part. He LOVES music. He’d been practicing all month. But it wasn’t meant to be. He was content to be in the quiet classroom where he could bounce on the trampoline for a few and not have all the overwhelming noise and commotion.

As Tate found his calm in the classroom, my heart broke. It’s not fair. Something as “simple” as an hour-long breakfast with other third graders and veterans was just too much. I wanted to cry. I wanted to scream. Instead, I watched other children sing and sway and pledge their allegiance to the flag. My dad watched other people’s grandkids belt out “The Star Spangled Banner” and “America the Beautiful”.

In those moments, I wondered, are the gaps getting too big? Is Tate being properly served by being in a general school setting at various times during the day? The other children his age are maturing at a faster rate. They are able to do so much more independently. They are able to perform songs as complicated as “The Star Spangled Banner” and can last an hour in a large group of people. Tate tried. He gave it his all. But in the end, it was too much. And is this gap fair to him?

And I find myself back in the hard place…wondering if we are doing the right thing. Wondering if we are keeping him in a general school setting because it’s more comfortable for us…is it what’s best for him?

And that internal struggle as a parent begins over again…

Rambling Thoughts…

Sometimes, I forget that I’m a parent of a special needs child. In the recesses of my mind, where I think about my life and where I am at, where I was, and where I hope to be, I don’t always factor in that two of  my sons have some challenges. They are simply “my boys”. As a parent, a mother, I love them. NO descriptors need to be used with that, right? So, when I listen to my inner monologue, I rarely use the “autistic” and “ADHD” and “special needs” descriptors because plain and simple, Tate and Jake are my sons. I love them. Period.

Of course, the reality of it all is that I do have children with some special needs. The society within which we live is not designed for individuals with different neurologies. It really seems to be designed for those of us who function within the realm of neurotypicality…whatever that means. Because my children do have needs above and beyond what other children in their age groups require, I have stress. A lot of stress. Like many people, I internalize my stress. I stuff it down. Sometimes, I trick myself into believing that I have it under control. Until I don’t.

On Sunday I mentioned to Hubz that my throat felt scratchy. I figured I was getting a cold. As I have done my workouts the past 5 days (in my 10th week of the 30 day shred. Shut up. At least I’m still moving.), I have found that they are harder, not easier. I was feeling exhausted all of the time. My head hurt. My joints were achy. Tuesday night I thought I had a mosquito bite on my back. I scratched it, and let it go, as I had to calm a certain 7-year-old’s anxieties about the start of Extended School Year. Yesterday I noticed how ITCHY my back felt as I was in the shower. As I toweled off, I angled my body to see what was going on with that mosquito bite. Holy moly!! It wasn’t a bite…it was a swatch, about 3 inches wide, on my left side. CRRRAAAPPP! The pieces started to fall together.

It all was eerily similar to the June of 2006. Tate was 2 months old and incredibly fussy–and never sleeping. Jake was demanding of all of my extra attention because he had this pesky new baby brother who always needed me. Hubz was working–a lot. I had a really bad itch on the right lower side of my back. And it was raised..and a little blister formed. Shingles.

Yes, with all of my stress, the stress that I have internalized, the shingles have returned. I luckily don’t have pain…just itching and joint discomfort. And I am so tired that I feel like I could be Rip Van Winkle and sleep for years…and maybe STILL need more sleep. I’m moving at a snail’s pace, but I’m still moving..and still able to function–mostly.

Guess I wasn’t handling that stress as well as I thought. It got the best of me. So, yeah, parents have a lot of stress. Parents of children with special needs have even more stress. We deal with more than most do on a daily basis. It is hard. It is okay to admit that it’s hard. That is not demonizing our kids or whatever needs they have. It’s a fact. We have to plan, prepare, make contingency plans, call ahead, fight with insurance, fight with insurance some more, have difficult conversations–almost every single day. We can’t rest too much, because there is always something else coming up that requires careful consideration and planning.

That being said, if you’re feeling overwhelmed. Overburdened. Overdone. Get some help. Call someone. Anyone. Help is out there. Please take advantage of it. (I, for one, am taking advantage of my in-laws offer to watch the boys overnight on Saturday. Hubz and I need the quiet. The time just for us.)

Editor’s Note: My shingles saga is a weak segue into the tragic story about Alex Spourdalakis. It has weighed heavy on my mind (and heart). All I can think of is this dependent child who lost his life when his caregivers thought there was no other way out. There is always some other way. Murder is not the answer. EVER. 

This horrific act happened in my state. It is way too close for comfort. That poor boy. While he was adult-sized, he was a boy. Innocent. Upon hearing the story when it happened over the weekend, I couldn’t get over how the police chief said they were acquainted with the boy and his family because he often had to be restrained when going to the doctor’s office. If the family was acquainted with the police department, why didn’t the mother and caregiver call the police when they were at a loss…the police could have gotten Alex out of there…to safety. DCFS had offered help. It was refused. (Even if it wasn’t enough, at least it was something…why refuse it? Why play martyr?) So many why’s and what-ifs….

So, please, if you ever feel like you’re at the end of your rope…truly at the end..and have no hope, there is always hope. Always. Here are some links for references…for lifelines…

Childhelp® –  800.4.A.CHILD (800.422.4453)

National Parent Helpline® – 855.4APARENT (855.427.2736) (available 10 a.m. to 7 p.m., PST, weekdays)

US Dept of Health and Human Services Child Welfare hotlines by state

The Super Sleuths are on the Case

Tate has been a wreck. In Tuesday’s post I discussed how dysregulated he was this past weekend. Thing is, the past 3 weekends have been like that. He wants to stay home. He whines. He scripts incessantly. He bosses his brothers around like a little dictator. I know he’s struggling…and I can’t pinpoint the exact cause of his distress. And that is what distresses me.

It may be the winter weather. Tate has never liked winter. He hates pants and long sleeves. He shuns boots and mittens and hats. He complains about the 2-layer winter coat that he needs to wear when the temperatures dip below freezing. Please do not get me started on snowpants…which almost always end up with one or both of us in tears. Tate is super sensitive to the cold. The kid “runs hot”, and yet, when he’s outside in the frigid air, it’s like he’s in suspended animation and he just can’t get his body to work. Commence whining, as he has yet to learn to cope with the cold. (I really can’t say much..I hate the extreme cold, too.)

Maybe it’s the change in the way his team at school is handling his behaviors. They are working on helping him learn to wait…which I have established is incredibly difficult for Tate. The new routine and behavior plan may be stressing him out. That, on top of the weather may be making school a bit too much for him…and he holds it together there fairly well, so he falls apart at home–his comfort zone???

Maybe it’s the lack of outdoor recess? It’s been FRIGID this week. The kids haven’t been outside at all. My kid needs physical release. He needs that time to run, swing, jump, crash, yell, scream. That outdoor, be-as-loud-as-you-want-to-be time.

The dysregulation could be a result of anxiety over my change in behavior. I notoriously struggle during the cold winter months. I get SAD. I am much better this year, thanks to a healthier diet and regular exercise…but I still don’t get proper sleep (thanks to my children), and hence, can be a bit short and crabby..and down. It’s harder to be the cheerleader when all one wants to do is lay on the couch and read or surf the Interwebz.

Tate is on meds for his ADHD. He had been more focused and attentive and less impulsive on the meds. But we haven’t had a change in dosage in a year. In a year, he has grown 2 inches and lost about 8 pounds. (He had been “obese”, so the weight change was being monitored, but wasn’t detrimental.) I have noticed less focus and more impulsive behaviors lately. He is fidgety again. And he wants to stim all.the.time. We see the psychiatrist in 2 weeks. I am wondering if it’s time to change his medications…

If I’m honest with myself, I know that the struggles are from a combination of all of the above. He has a lot going on. I guess my sleuthing needs to uncover which of the above is the biggest driver of his behavior…and then I need to see how I can help him feel better. Which is difficult when he won’t break a script…and won’t use a script to help me out. All I can decipher right now is that he’s pretty darn miserable…and I told him last night I want to help him feel better. That garnered me a hug. Which gave me a dash of hope that maybe we can get him to his happy place again.

Right now, though? I’m stuck in that hard place…and it’s not a place where I want to be…or him to be.

Kid-friendly Autism “Elevator” Speech…fail

Editor’s Note: This could also be known as “The Day I was not smarter than an 8 year-old”.

I am carpooling with the neighbor family again. Their nanny takes the kids to school, and I pick them up. Tate takes the bus to school, though, so he isn’t in the mix. I pick him up early, so he’s not in the car on the ride home.

Jake and Sis are 3rd graders. They’ve known our routine for a while. They know Tate is a little different. Sis likes to asks several questions about Tate. I know she listens quite attentively when I talk to her mom about Tate and his progress/therapy/delays. I know my neighbor has told her daughter that Tate has Autism.

Bro is a kindergartener. He is new to our pick-up routine. He asked, again, where Tate was when I picked the kids up from school. I told him that Tate was home doing therapy.

Bro: What’s therapy?

Me: Oh, um, it’s skills-building activities for Tate because he needs some extra help with learning.

Jake: It’s like going to a class or something. You learn stuff.

Bro: Oh, ok.

Sis: Bro, Tate has, has, um Aw…AWT-ISM. You know what that is, right?

Bro: No.

Sis: Well, Tate was born different than us. He’s different.

Gaahhh!! Yes, he’s different…I can’t dispute that..but, er, well…I don’t need these kids going around talking about how “different” my kid is….and then again, I guess that’s just something I need to get used to, isn’t it? Tate is different. It’s not bad. Just…different.

Me: Well, his brain works a little differently from ours. Tate is like us in many ways, but he is also different, too. It’s kind of like a mini-van and a car. They are similar, but different. Like, a van has sliding doors and a rear-lift, and requires some different maintenance than a car that has 4 doors that swing open and shut and a trunk.

Sis: I guess. You know, we all think differently. 

Me: Yes, we do think differently…we all have our own opinions and thoughts. But it’s more than that. It’s just that Tate’s brain works in a way unlike the rest of us. Not bad.

Bro: Oh, ok. I think having Autism would be cool. Cuz, well, you can punch Tate in the stomach and he doesn’t cry.

Me: Uhhh….(How the hell do I respond to THAT?!)

And with that, Bro & Sis jumped out of our car and into their driveway. Fail. Fail. Fail…..I failed my kids. I failed at a great opportunity to make these kids aware of autism and how it affects us..how it affects Tate.

The larger part of this issue is that I am absolutely frustrated with Sis. I bristle at many things she says lately. I am probably taking things wayyyyy too personally from an EIGHT YEAR OLD…but she is  an 8-year-old who is very smart and very clever…and knows too much for her own good. The past few mornings as we wait for Tate’s bus, she comes out with her brother and waits with us…but it becomes a running commentary on her part about how weird/different/awkward my kids are. Jake is still using training wheels?! I can’t even get on a  bike with those anymore! Can’t he balance on a bike? Does Tate ride a bike? Your boys don’t really like riding bikes. They only ride scooters. Jake has the “easy” teacher for 3rd grade.  I don’t know how to cut it off other than to say “that’s enough” and move along to attend to my weird/different/awkward kids. I KNOW my kids are weird/different/awkward…I don’t need one of their peers constantly making remarks about it.

Well, I need to go figure out a better way to explain Autism to the kids we know…I can see that we’re finally to the age where I will need to start giving the “elevator” speech about this life of ours….and how weird/different/awkward it is.

The key, though, is to also share the beauty, upside, and unique nature of our life. How we can enjoy the little things more..because the little things aren’t so little. How we have all become more accepting, more forgiving, more understanding….


Why Does He Do That?

I know that Tate, who appears outwardly typical in appearance, just, well, isn’t. His brain works in mysterious ways.

When our Tater Tot is excited, he flaps and volume control goes out the window. When he’s anxious, he paces, he flaps, he pulls his underwear waistband, he emits some odd sounds…a mix between a hum and a pained cry. So, yeah, not “typical”.

We walk the fine line that so many who live with Autism do…the one between encouraging more socially acceptable behaviors and allowing your child/brother/nephew/grandson just be himself.

Our family knows that this is Tate. It’s who he is, and how he reacts. We all, 2.5 y.o. Cole included, know how to talk Tate down from his anxiety. We all know which stims work best when…and we are starting to decode his scripts…even Jake, who has language issues himself, knows that Tate’s scripts mean something.

I have been preparing myself for the inevitable. The questions from kids in the neighborhood, at church, at the store, at the park….why does he do THAT? However, last night, as my boys frolicked in the Summer-ness outside, I felt blindsided.

We were outside with two neighbor families. The one family has a daughter Jake’s age, and 2 sons, each a year behind my two younger boys. The other family has a 3 y.o. daughter and infant son. The kids had been chasing each other through the yards and the cul-de-sac out front. They were all having so much fun. And Tate? He was keeping up, having fun and, loving being in the thick of things.

Somehow we ended up in our neighbor’s back yard. They have a small playset (since it’s only their 3 y.o. who plays out there currently), which has one toddler swing and a regular swing. The older neighbor girl, the one Jake’s age, began to swing on it. Cole was in the toddler swing.

Tate ran toward us. He made a beeline for the regular swing. He started to flap. I could see the anxiety catch up with him. Between the 7 kids roaming around, and Tate’s desire to swing on the unavailable swing, his inability to cope became obvious. He lost his words, and the emotions took over. He flapped. He paced. He made that noise.

Me: It’s ok, Tater. You can have a turn soon. She’ll let you swing when she’s done.
Tate: hruuuahhhuuuh. I’m fine. Huuurrmm. Huuurrmm. (Flap, flap, flap)
Me: Settle down, sweetie. It’s ok. (I reached out and gave a deep pressure hug.)
Tate: I’m fine (his script) (Flap, flap, flap)
A: Mrs. Hope, why does he do that?
Me: The flapping?
A: Yes. Why?
Me: (hoping the panic didn’t show on my face) Well, A, Tate reacts to anxiety differently than we do. Like, when we get excited, or really, really want something, but aren’t sure we’ll get it and we just wring our hands or think things quietly in our heads, well, Tate shows that feeling with his hands and feet. We might feel that way, but we do it inside, where Tate puts it out there.
A: Ohhhhh…
Me: It’s not bad or anything…just a different way of handling his emotions.
A: Yeah, I guess. (Gets off the swing.) Hey, bud, you can use this now.
Me: Thanks, A.
A: Sure. He really wants it more than I do….

Aaaannndddd, exhale. I am very lucky that one of my first explanations was to a girl who is (1) very mature for her age, and (2) fairly understanding of younger kids. I am sure she had more questions for her mom later, but she was content with my explanation for the time being…

Now to refine my explanation for future questions, looks, and judgements…

By the way, while we discuss Autism in our house, we really haven’t said much to other kids. Tate has never asked, and if I tell him, I don’t know how much sinks in. Jake asked once, but then he was like, oh, that’s Tater.

Our friends know, but never ask if we want to talk to their kids about it…and I never know if I should bust into a lesson about neuro-diversity.

Sometimes this parenting gig is hard!

Tag Cloud

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