When His Dreams Are Bigger Than He Is

"I want to be a hunter when I grow up, Mommy! And a doctor and a singer man and a house builder man and a fireman and a policeman and a artist! I want to have lots of jobs when I grow up, Mom!"

At five years old, Kyle has a lot of dreams. He wants to do all sorts of things when he's older. And while I believe in him and support his dreams, I don't have the heart to tell him I don't know if he'll be able to. 

So what's a mom to do when his dreams are bigger than he is?

I could sit him down and have a long talk with him about how his medical problems and his mental issues and his cognitive delays mean he probably won't be able to do a lot of those things.

I could break his heart.

Or I could swallow the lump in my throat and blink back the tears and smile my biggest, brightest smile at him and say, "Of course, honey. That sounds GREAT!" 

Five years of raising Kyle has taught me he is an overcomer. I can't see it now, but maybe twenty years from now, he will be one or more of the things he wants to be.

Meanwhile, I'll just be happy if he remembers to turn in his homework on Monday.

Three Steps Forward, Two Steps Back

During our hiatus, on December 1, 2015, Kyle had a bilateral derotational osteotomy. For those playing along at home who don't speak orthopedics, this is a fancy way of saying he had the tibia bones in his legs (lower leg bones) surgically rotated to the correct positioning. Kyle had what is known as tibial torsion in both legs (bilateral). Now, tibial torsion is very common in young children. It's what gives toddler legs their bowed appearance. Most children either totally work out their torsion by about three years old or have had their torsion begin to improve to a degree that their doctor isn't concerned. Kyle's legs had been rotated to -15 and +5 degrees consistently since he was first looked at for it when he was 3 years old. They had never improved, and it was to the point where, after all the other procedures, interventions, and therapies we'd done to correct his clubbed feet, we knew the continuing issue with correcting his feet and thus enabling him to walk more correctly was the tibia torsion issue. Basically, your bones hold the muscles in place. If your bones aren't correctly positioned, your muscles, tendons, etc. won't be either. Untwist the bones and the rest will follow, essentially.

The day after his surgery found Kyle in thigh high casts (rainbow colored, because of course) and unable to get around on his own. The King was born on November 10, 2015 by c-section. I was still in recovery and not able to assist Kyle in and out of bed. We were still in the hospital. Kyle was a two person lift. His nurse, M, didn't wait for assistance and dropped him in full view of myself, my mother, and Kyle's doctor, who were speaking about his expected course of recovery and projected release at the time.

This left one of the pins in Kyle's left leg, which was holding his surgically broken bones together, bent.

To say this didn't bode well is an understatement.

Fast forward three months to today.

I took the kids to the park after we picked Kyle up from school. I had noticed a tendency for Kyle's lower legs to look red and splotchy since he came out of his casts about three weeks ago. Today, at the park, they were red, splotchy, swollen, and he was complaining of pain. To add insult to injury, the poor child had an asthma attack. Guess what we didn't have?

If you said a new inhaler, you're right.

So, I called his doctor and rushed him in to see her. (He has six doctors. I'm currently talking about Dr. C, his pediatrician, who is much closer than our beloved Dr. F, the orthopedist, although he did receive a phone call from both me and Dr. C.) After consulting and discussing and congratulating Mom for taking pictures of his legs, which already looked much better by the time I'd driven him the half hour from our town to her office (she is located in the town we used to live in and we adore her. When you're a special needs parent, you do what you can not to lose good doctors. I'll drive half an hour quite happily to see her.), so the pictures I'd taken allowed Dr. C to see what I had been seeing when I called her office to come in, we have figured out what's going on.

Kyle is allergic to pollen, first off. Let's clear that up. And it's spring, so pollen is everywhere.

Anyways. Kyle's legs were red, splotchy, and swollen because his circulation is absolute crap in his legs now. Dr. C believes the asthma attack, which he hasn't had in months, was triggered by a combination of pollen allergy and being too hot- although it was 80 outside and the child was bright red from the heat, he wasn't sweating at all. His sweat glands are damaged from all this.

Although Kyle has finally gotten his wish (aside from the scars and a lurching gait, he at last looks more like his friends), this puts us behind again. Three steps forward, two steps back. He looks better, but he now has chronic issues he didn't have before that we can't do much about.

Kyle says, "It's okay, Mom. I don't mind. More stuff to teach my friends about!" (That would be all of you, by the by. Kyle calls each and every one of you, most of whom he doesn't know, his friends.)

This entry has been read to and approved by Kyle.

Kyle, the week before Christmas, shared by his request

So Exactly What Happened?

So, as promised in my posting two days ago, Exactly What Happened? Why did I stop writing this blog? Where did we go for over a year?

The readers who know us personally  know exactly what happened, but those of you who follow us from around the world that have never personally met us have no idea why one day, we were here, and the next day...nothing for over a year.

Right before my final posting over a year ago, Mom met someone. And that someone...well, let's just say Mom should really just stay out of the dating game, because Mom is just NOT good at it.

As a result of that relationship, The Crew was left with no income because Mom lost her job as a result of "someone's" issues, and left homeless because Mom had to leave that relationship and had no income to pay the bills with anyways. We ended up living in a hotel for a little while before landing somewhat on our feet again in a town about twenty minutes from where we had been, with the help of family and friends.

Also as a result of that relationship, we welcomed The King into the world on November 10, 2015. Kai and Taryn are now the proud older brothers of a bubbly, healthy little boy.

During this "missing" year from our blog, we had a lot of other things happen, too.

Taryn was diagnosed with bipolar disorder and hypoglycemia. He is also undergoing genetic testing at the moment.

Kai underwent that tibial torsion surgery on December 1, 2015. We had a lot of ups and downs with that, which you can read about on our FB page, Life With Kyle, which we started in October 2015.

Taryn and I were in a car accident on December 22, 2015. We were hit by a semi truck on our way to Taryn's geneticist. We're still in recovery from that, with Mom in physical therapy and potentially needing further help with my shoulder and back.

Kai is now in Kindergarten and doing very well. His teacher and I communicate on a near-daily basis via notes in his agenda back and forth, and I adore the staff at his school. Mr. F, his assistant Principal, is one of Kai's all time favorite people. Mrs. K, his teacher, is wonderful with him. Kai has even made two very close friends, K and M. He's also learning to advocate for himself and not afraid to talk to people about his issues. He is still very sensitive about his scars, and struggles to understand what he's done when his classmates get upset with him- he has very little understanding of social rules and acceptable behavior, and this often causes problems for him with his peers. He's also been diagnosed with Oppositional Defiance Disorder (ODD) and formally diagnosed and in treatment for ADHD, and we've found he's dyslexic, which has caused some ridicule in class from his peers as he struggles with things they find easy. Kai is mainstreamed, as we felt it would be a disservice to him to stick him in special ed- he struggles, but is too bright for the work he would receive in a special ed setting.

Taryn was given developmental and intelligence testing in October and was scored in the top 2% of the population for his age group intelligence-wise. He's very bright and I look forward to his school experience starting next year.

The King is a bubbly, healthy baby who is the unequivocal ruler of the house at the moment. He is developing on target, and is wonderfully healthy. He is Mom's first full-term baby and the first to not need an extended hospital stay. He was released when I was, and has only needed the usual well-child check ups. Even at just barely four months old, The King has a personality and is lots of fun!

So, now those of you who don't personally know us are all caught up on just where in the heck we went for over a year except for the things that I don't feel comfortable discussing. (We're very open, but there are some things that are not up for discussion.) We don't plan to disappear again! We're very excited to welcome you to the new edition of our family blog and hope you enjoy the journey! 

A Rant on Cures

So, it's been a while. A long while. And I promise I will explain that.

Next posting.

This posting, I'm going to take a second and just...rant. I'm going to rant because the subject I'm going to rant about really, really, REALLY bothers me.

BLEACH ENEMAS TO CURE AUTISM.

Okay, first of all, I am NOT a supporter of autism as a disease. I do not view it as a disease- you cannot catch autism, you cannot spread autism if you are autistic, you cannot surgically fix or remove autism, etc. It does not fit the parameters of a disease. Autism is a DISORDER. A neurological DISORDER, not a DISEASE. As such, I don't believe it can be cured. I believe each autistic individual should be given all the tools they can possibly receive to lead the fullest, most successful they as individuals are capable of. I believe that no autistic person should be told they can't be independent or succeed at their own goals in their own time simply because of autism. (Naturally, there are autistic individuals who cannot live independently, but I believe that independence should be encouraged to each individual's specific abilities.)

Those tools, however, should NOT include cleaning agents as enemas! In what world does that make sense!?

"Bleach? You mean, like the stuff I use to clean my floors and make my whites whiter? Insert it into my child's body to cure them of a neurological disorder? That sounds like a GREAT idea! Here, take my money!"

The hell, guys????? Come on! I understand, I do, I really truly do, that there are parents out there whose children are non-verbal, who cannot self-care, who are aggressive, who encapsulate the worst traits of autism as seen in the media and described by books and articles- and I get that these parents are desperate to help their children. My  heart hurts for them, because Kai WAS that kid. He's STILL that kid in many ways.

But seriously, how on EARTH does inserting a cleaning agent into your child's body get even momentary consideration!?

There are so many other ways to help. There are controversial things, like ABA. There are proven therapies, like music therapy, occupational therapy, even art therapy. There are medications for those who are open to them that can help with the aggression. There are other forms of communication you can (admittedly pain-stakingly) help your child learn to use besides their voice! (As special as that is; as mom to a formerly non-verbal child, I totally get that!)

Please, people, PLEASE, for the love of whatever you hold to be holy, STOP INSERTING CLEANING AGENTS INTO YOUR CHILD'S BODY IN HOPES OF CURING THEM!

That is all.