Custom Built Bed for my Hypo-sensitive Boy

Posted on December 26, 2013 by simpleijustdo

The Boy is often hypo-sensitive, meaning he needs more sensory input than is typical. He rubs his shoulder on the wall as he walks down the hall, loves big hugs, and could spend all day in the water if we let him. He needs that extra input on his skin to be able to tell where it ends. Part of this is that he likes to be under blankets, and in enclosed spaces, as many on the spectrum do, and has taken to hanging out in his closet to achieve the desired effect. No problem except that he is getting bigger every day, and his closet is not.

I mentioned the other day that The Man had designed and was custom-building a bed modeled after the Captain’s bed style, so that The Boy could have an enclosed space under it in which to hang out. Here is the (semi-) final result:

I say “semi” because, as you can see, the shutter door has yet to be attached on the end. The Boy chose the color, and would like the door to be painted the same color, but alas, it is made of plastic, requiring special paint, and well, there’s only so much time in the day. Some of you IKEA fans, may recognize the dark long piece with drawers that acts as a step and added storage that can be accessed from both underneath and the front of the bed. It is from the Expedit line, and we used it for sorting the recycling at our old house. It provides much needed additional storage in The Boy’s new room design. We got rid of the box spring, and his mattress sits on top of slats, allowing for extra head room underneath.

The best part is that The Boy loves it. It really is nice to have a husband that fulfills his promises and is incredibly handy.

Is it Time to Call a Spade a Spade?

Posted on December 19, 2013 by simpleijustdo

I described the ex’s latest cancellation the other day, and The Boy’s reaction. I am always the one who has to relay the news to The Boy, and I am the one left to field questions to which I have no answers. I am the one to deal with the acting out that quite often happens after one of these cancellations.

The ex will never change, but does that mean I shouldn’t try to show him what he’s missing, and what he is doing to our son?

English: : A mirror, reflecting a vase. Españo...

Time to hold up a mirror so he can self-reflect?…

I’m thinking of sending him a text (he doesn’t even access his email, and I don’t want to get into it with him on the phone) to point out that he hasn’t seen his son in eight months, and to ask him to imagine not having his own dad around for that long a time period. Explain that I understand money is tight, and that he has a hard time taking work off, but that if he saved a bit out of every paycheck, and told his boss months in advance (instead of days), he might be able to swing it. Ask him to stop “trying” to make plans and only tell The Boy he will see him when he is sure he can. Point out that his son is sad and angry at him, and that he deals with this by acting out, often at school.

He will undoubtedly get angry and not speak to The Boy for months after I send it, because that is his MO. But I feel I have the right to ask someone who continually hurts my son to take a moment to realize he is doing it, and to please stop.

I know he won’t change, but there’s a chance he has simply not given a thought to the effect of his absence and broken promises on his son. And if there’s a chance, it’s worth trying, right?

You Never Really Have the Knack of it

Posted on December 11, 2013 by simpleijustdo

As The Boy grows, I have these brief feelings of knowing what I’m doing, like I’ve got him figured out and can anticipate whatever may come up with him. And then Life laughs in my face and says, “Are you kidding me? He’s growing which means he’s changing, and you don’t have a clue!”

And I don’t.

He no longer requires toys for birthday and Christmas, which is a GREAT thing, but his electronics have overtaken everything, and if one of them gets damaged (a la an iPad screen) or goes missing for whatever reason, it can’t be replaced. Did I say if one goes missing? Hahahaha. There goes Life laughing at me again. I should have said when one goes missing…

I mentioned recently that his old DS, a gift from his 8th birthday, which had been forgotten in a drawer for a couple of years has recently resurfaced because many of his friends have them down here. Many of the Christmas and birthday presents purchased for him this year are based on that rekindling. And now his DS has gone missing because he has been taking it to school so he can play it in the van on the long, early ride.

He had been warned about taking his electronics to school, but now what? What if it wasn’t misplaced at school or at Grammy’s or in his messy, messy room? What if it was stolen, or “borrowed” by some unscrupulous acquaintance? What do we do?

I haven’t a clue.

Very funny, Life…

The Boy Turns Twelve

Posted on December 10, 2013 by simpleijustdo

Twelve?? Yes, twelve. I still can’t believe it. He keeps getting older. And bigger. And his voice keeps getting deeper.

When he was born, he weighed 5 pounds, 6 ounces, and he fit between my elbow and my palm (all snuggled, of course). When he was born, the nurses quickly nicknamed him “Red” because he was born with a full, and I mean full head of hair that they thought was red. It still looks red when it gets wet, but he has always been blonde. When he was born, he was a great eater.

About a month later, we almost lost him. He had a “malrotation of the intestine” which was not discovered until I questioned his pediatrician’s assessment of the fact that he was projectile vomiting across the kitchen and spitting up yellow. Only after we switched pediatricians and did an upper gi scan did they figure out he had this malrotation. And that he was hours away from being in serious, serious trouble. Immediately after the gi, they took him and told us he was scheduled for surgery in four hours. To this day, I’m glad it all happened so quickly. I didn’t have too much time to think about what could have happened.

After the surgery, he wasn’t allowed to eat. They wanted everything to pass his system to make sure the surgery was a success. Therefore, only sugar water was allowed in small amounts. I didn’t realize it at the time, but pictures from that time reveal him to be this tiny skeleton-looking baby. After three days, he was supposed to be clear, but he wasn’t. He ended up not being able to eat for six days. I was still recovering from childbirth, and there was no place for either of us to sleep there – only one recliner. So we took turns sleeping at the hospital. It was the worst kind of purgatory, being separated like that, praying for his recovery, while still in pain and bleeding myself (and having to pump on top of all of it).

Needless to say, he not only survived, but thrived, and soon filled out into a typically chubby, happy baby, who was still a good eater, still had a head full of blonde hair, but could no longer fit between my elbow and palm. He was growing, and he hasn’t stopped.

Happy Birthday to my Boy. He’ll never know how thankful I am he’s here.

Use Your Words

Posted on December 9, 2013 by simpleijustdo

Tomorrow is The Boy’s birthday (Just FYI – there will be another birthday related post tomorrow. Birthdays are a big deal). Today’s post is about verbalizing. The Boy is verbal. In fact, if he is speaking about interior dome lights in cars, he is downright verbose. But he is not always verbal about what he wants and needs, nor is he verbose when asked direct questions. This is fairly common with autistic kids. They can tell you every plot point of the latest Disney movie, but ask them to make up a story and you are met with complete silence.

The Boy has always been this way. When he was younger and Webkinz were a thing, he would receive a new one for his birthday or Christmas, and could not come up with a name. They were often named whatever the first suggestion I offered was.

Tails added to “the list”

He will tell you what he wants (in terms of toys, games, etc.) while in the store, when they are staring him in the face. This is why we came up with the strategy of taking pictures of them with my phone and putting them on “his list”. This helps us get out of the store without having a meltdown about not purchasing what he wants then and there. And you may be thinking, “Great! Then you know exactly what he wants when it comes to birthdays and Christmas, because you have pictures of them right there on your phone!” But often, he never speaks about those things again, and I am left to wonder whether he really wants those things, or whether he was just attracted to them at the time. Was it true love or was it just lust?

Therefore, I did a mental double-take last week when we were at the store last week, and he saw some fleecy sleep pants he liked. He pronounced, “Mom, you could get these for my birthday! I want these for my birthday! Take a picture!” He repeated some variation of these three phrases for a couple of minutes, and I think he was as excited as I was that he had verbalized his want for something specific for his birthday.

A couple of says later, I casually asked, “Do you still play with your Bionicles?” He said, “Yes, I do. You could get me a Bionicle for my birthday, too.”

It may seem like a small distinction, but it was huge to me. He has never before asked for something specific for his birthday, and he continually amazes me by making these small (but huge) steps toward independence.

We’ve Come So Far

Posted on December 5, 2013 by simpleijustdo

When The Boy was little, haircuts were tortuous. I gave him one at home exactly once. Plopped him in his high chair, and it went OK, besides the fact that it took me two hours… After that, we went to the Fantastic Sam’s, or the Great Clips, or whatever was the latest one in the strip mall nearby, and he would scream and cry, and I just didn’t know how else to do it. Some of the ladies cutting his hair were lovely people. Others were less than lovely, roughly yanking his chin this way and that, easily frustrated by his inability to be calm and compliant. This was all before his diagnosis, of course.

Then I had an epiphany and we began to bring a milkshake with us, which kept him happy and distracted.

Nowadays, I don’t even have to go with him. Sometimes he goes with his Poppy, sometimes with The Man. He still isn’t a fan of the clippers, but he has come a long way since needing a milkshake just to get through it.

And when he’s done nowadays, he looks like a man. *sigh*…

The Man for The Boy

Posted on December 3, 2013 by simpleijustdo

This morning, The Boy’s transport van was ten minutes early. If you know nothing about autism, you probably still know that routines are king, and if you mess with a routine… Well, watch out.

I heard the first honk at 6:38am. The Boy had just decided he didn’t want to wear the pants we had chosen, but wanted to wear the blue ones. I frantically searched for the blue ones, found them, gave them to him and he said, “Their inside out!” I quickly turned them right side out, handed them to him and asked him to put them on, while I found a pair of socks to put on his feet myself. That done, I headed to the front door, opened it, and stuck out a finger (no, not that one, although I was tempted), to let her know we had heard her and were coming as quick as we could.

I returned to The Boy’s room, and told him to go put his shoes on. I grabbed his poptarts in a baggie, and his bookbag, and tried to hurry him out the door. “Where are my glasses?” he wailed. I set everything down, and went into his room to get his glasses.

She honked again.

Really? Did you think I didn’t know you were there? I already came outside in my robe to let you know we were coming, but you needed to honk again?

I gave him his glasses, gathered all of his things, and shooed him toward the door. “I need you to tie my pants! You’re not going to tie my pants?” I got him on the porch, gave him his things and tied the drawstring on his pants. I gave him a kiss and sent him on his way.

When I came in, The Man said, “Really? Why was she so early, and why did she have to honk twice?” Exactly. “You need to call them and tell them they can’t do that to him. He needs his routine, and they definitely don’t need to be honking like that.”

The Man advocating for The Boy.

Not just supporting me, because he knew I was a bit frantic and anxious from the situation the driver created (which he did, as well, asking more than once if I was OK), but actually defending and advocating for The Boy.

Exactly.

Agitation

Posted on December 2, 2013 by simpleijustdo

The Boy was agitated Saturday, it seemed like all day. Nothing was working right for him, he couldn’t find things when he needed them, and he was on edge. Everyone has days like this, but not everyone’s agitation could end up in a full blown meltdown, so I was also on edge as a result.

We tried to take it easy, and take him places he would enjoy. He particularly loves to go to dealerships with The Man and look at cars, and sit in as many as he can to check out the interior dome lights, one of his obsessions. While we were pulling in to the local flea mall, where The Man bought him a toy Town & Country van similar to the one that now picks him up for school in the morning, The Boy spotted a place that repairs cars, and sometimes sells used ones. He made us promise we would stop to look at the cars when we were done at the flea mall, and we complied.

When we stopped, I stayed in the car, as I usually do, because I am not obsessed with cars, and quickly become bored. The Man is fairly deft at handling The Boy and redirecting him when necessary on these excursions. But today, The Boy opened a car door, and The Man found a key in the ignition. It was fairly important to get that key back to the shop, so I carefully watched The Boy as The Man went inside. The Boy, of course, began to flit toward cars that I couldn’t be certain didn’t belong to anyone, because people leave their cars unlocked down here.

He chose a Saab sitting next to the shop, and when he opened the back door to see the some lights, I saw a jacket and a tennis racket inside, and realized this was someone’s car! I carefully steered him away, trying to explain that we couldn’t go in that car because it wasn’t for sale, and The Boy wasn’t quite understanding – if they belonged to someone, why were they open? Then he chose a Jeep right in front of the shop, and The Man motioned to him from inside to get out of that one, too. That one was also not for sale.

I redirected him toward the front section of cars, and let him be until the Man returned. It was then we realized The Boy was upset.

He “has” an imaginary Chevy Sonic, to which he has created a set of keys, complete with a computer-generated and printed key fob with lock, unlock, and alarm buttons, as well as a cat charm. He takes them to school everyday. The key is an actual key that was an engraving mistake from the hardware store, given to him for free.

As his eyes brimmed with tears, he told me that he had to give up his Sonic now, and trade it in for a Land Rover.

This was his punishment, I believe for going in cars that he wasn’t supposed to. Neither The Man nor I had been upset with him, but he felt like he had done something wrong, and needed a punishment, so his “car” needed to be traded in.

I felt awful for him, and I didn’t really know how to help. I insisted he didn’t need to give up his Sonic, and then tried to redirect his attention elsewhere. When we stopped at the hardware store on the way home, he picked up another key, deciding that he needed to replace his current keys with Land Rover keys… OK. Whatever you need to do.

This morning, he announced that he was able to return the Land Rover and exchange it for the Sonic, so something had shifted, and all was right in his world again. These are the times when I would love to have just an hour inside his head…

Triggers and Blowups

Posted on November 20, 2013 by simpleijustdo

Last night, The Boy and I sat down to do some social studies homework (it never ends), and like most on the spectrum, he has a hard time with the whole concept of homework: School stuff should be done at school, and home is home. It’s a struggle, but as long as I break up our sessions, reward him, and don’t ask him to do too much at once, he does what I ask, and we are relatively successful. Usually.

At first, I couldn’t even find the answers to the fill in the blank questions. It took a fair amount of digging in the textbook, something at which my boy is not so good. Nor is he patient. “How long is this going to take?” he kept asking.Knowing the assignment was four pages and that this is his last week at his current school, I was overly optimistic about how much we could get done. If the assignment hadn’t been so challenging, we probably wouldn’t have had a problem. But we did.

He began playing with a chip clip on the table, and when I needed him to read from the text to find an answer, he was distracted. I asked him to put it down until we finished five answers, and he refused. I tried to take it away, and all hell broke loose. Screaming, swearing, breathing heavily, skin becoming mottled, and near tears, The Boy was all of a sudden not The Boy.

He became preoccupied with the “swear” which wasn’t really a swear, but he knew he had crossed the line, and was now punishing himself, saying he had to apologize to everyone he had ever sworn in front of, and was throwing quarters across the room (a family joke about owing someone a quarter every time they let a swear word slip in front of him)… I had to get him calm enough to figure out what had triggered this, and get him off the idea that I was mad about the swear word. It was a challenge.

After about a half hour, making him sit with me on the couch, practicing deep breaths together, I was able to get him calm enough for me to understand that the homework was just too much. I told him we would cut it down to one page tonight, which turned out to be 3/4 of a page, but I was amazed that we were able to get anything done after a blowup like this. Progress? Maybe.

As he gets older, his triggers change, and what these blowups (pre-cursors to meltdowns in our case) look like change, as well. I won’t ever stop learning about my kid, oftentimes after the fact. It seems that as long as we concentrate on why the blowup happened, and take the focus off of consequences for “poor” behavior, I am able to learn so much more, and he is able to recover much more easily. Usually.

I’m Tired

Posted on November 11, 2013 by simpleijustdo

I’m tired of responding to emails about The Boy refusing to do his work, or clearing up miscommunications about tests and modified due dates. I’m tired of having meetings that go on and on about how he has basic characteristics of autism. Yup… We knew that already. I’m tired of people who apparently don’t have a dictionary or basic internet access, and still don’t understand what a modification is, or what autism even is in the first place. I’m tired of teachers trying to penalize him for “refusing” to do his work. I’m tired of receiving an email that sends me into a frustrated tailspin for the rest of the day. I’m tired of teaching my son about Egypt and minerals because for some reason they just don’t know how to teach him this stuff at school. I’m tired of politely telling them how poor their assessments are, for any child.

It’s overwhelming, and it has become my full-time job. And it can’t be. Pretty soon, I will not be available at their beck and call, and I will not have hours to prepare lessons for my own son. Because I need to work for real, and earn real money ASAP.

I know he is one of the 70 kids you see in a day (and don’t try to tell me you have more, because you don’t. There are only 70 sixth graders in the school). I know you feel like you don’t have the time to spend on this one child. But if there’s one thing you should have learned over the span of your careers is that the amount of time you spend on each child will never be equal. Some kids need more of your attention, and the equitable thing to do is to provide it, instead of throwing your hands up in the air and saying, “I just don’t know what to do!”

The internet is an amazing thing. You can find YouTube videos on just about anything. Hell, I don’t even teach PE, but I was able to find a resource on how to provide accommodations to students with special needs on the President’s Physical Fitness Test by simply typing all of that into my google search bar. It took me less than 10 seconds.

I just spent an hour searching “autism work refusal” and got some really helpful information from a bunch of sites. It’s not all helpful, but the search provided ideas for how to engage students on the spectrum who will not do classwork (and who won’t even show up for school), rather than punish them, and “hold them accountable”.

My kid loves school. My kid thrived in his old school. My kid has adjusted so incredibly well to the structure of middle school. They have so much in their favor, and they still can’t make it happen.

I can’t make his teachers want to help him, and I can’t help him all on my own. This is my conundrum, and this is why I’m tired.