Tag: High Functioning Autism

It’s Time

When I was pregnant with him, I was sicker than I’ve ever been in my life. I read all the books, studied up on exactly how he was developing and growing. We dreamed about what this little baby would be like when we were able to finally meet him, like all parents-to-be surely do. When I held him for the first time I was on so many drugs from the c-section, but I distinctly remember the overwhelming and crushing tidal wave of love I had for this boy.

Watching your child grow and learn to crawl, and walk, and do all the miraculous everyday things they do is – in a word; incredible. Going through the sleepless nights, the endless days of diapers and feedings that feel like every day is groundhog day – all of it in hindsight seems to pale in comparison as we move into new phases of hard.

We’ve always known, really.

From the time he was two and half and cowering under a chair in the doctor’s office, when he still didn’t have any words at three, and stuck to the sign language and the mother/son way of communicating that we had developed, the way he speaks without consideration of volume and personal space, the rigidity of thought, and the extreme meltdowns when plans were not executed in the way they were supposed to be; we knew deep down. We’ve met with professionals, each reluctant to give us the official word for various reasons.

He’s not like other kids. He’s different.

He will eat the same 4 things every single day. For 5 years. Change to routine is hard. As a military family, moving is very challenging under the best of circumstances, it becomes chaos at times for us. Florescent lights in retail stores and the constant over-stimulation while shopping overwhelms him to the point of meltdown. Outsiders only see a bratty kid having a tantrum, because well, ‘he looks normal’. For the record, a meltdown is not a tantrum. While my heart is breaking trying to deal with his inability to deal with life, a stranger will mutter cruel and unwanted “advice” as they walk on by. This has happened more times than I can count.

It’s hard to watch your kid realize that he is different.

It’s hard to see him recognize that he doesn’t have many friends.

It’s hard to explain to him that to have friends, there has to be a give and take. He simply doesn’t have the social tools.

I cringe when people meet him for the first time and the wave of realization that he is different crosses their face.

I fluctuate between denial and harsh reality.

I’ve been living in the denial land of “he’s just a little different” and “maybe he will outgrow it”. We didn’t need a label before, but things are changing. Last night we met with his teacher at his new school. The first two weeks have been bumpy. He’s cried in class multiple times. He’s having a hard time adjusting. He is a quick learner and can do the work, but lacks the social skills for his age. He needs tools that a diagnosis will provide.

My heart breaks for his struggling little self.

It’s time now.

He’s different. He’s a kid who falls on the autism spectrum. And it’s okay.

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Sunrise

Looking out the back window at the ever changing colors of the sunrise, I paused in the busy preparation of breakfast to just stand there for a few minutes and watch. After slogging through the grey months, this display of dawn was a welcome reprieve. “Autism spectrum….obsessive compulsive tendencies,” the words the child psychologist said the day before still ringing in my ears.

We’ve been down this road before, though it was a few years ago. Screening prompted by his inability to speak at the level of his peers, and irrational terror by simply stepping foot into the doctor’s office. Deep down I think we both have always known there was a difference. Not extreme, not on the far end of the spectrum, but just enough to bring pause, a raising of our curiosity. We’ve never been parents before, he’s our oldest, so there isn’t a barometer of ‘normal’. I still cringe at that word.

In a strange way, having the doctor explain things to us in detail, having him nod in complete recognition at the descriptions of his behavior, was entirely comforting. No expressions of revulsion, no judgement, no surprised questioning looks about his behavior, or our parenting.

We aren’t crazy. We aren’t bad parents.

Those words are huge. Much in the same way our local froyo lady complimented our parenting skills (and turned a particularly rough day around for me) the words this doctor said, the encouragement he gave us, were beyond helpful. I felt my shoulders relax where I had no idea I was holding tension. There was a lifting of a heavy load I have been carrying around unknowingly.

He shows definitive markers on the autism spectrum, but he’s highly functioning. There is no reason he won’t grow to have a family and lead a very happy life.

There are things to be concerned about. You’ll have to find what works for your family. If it doesn’t work, even the things I say, don’t use it. Use what works for you.

Much of it will be trial and error. That’s to be expected. When things blow up and don’t go well, use those as learning experiences. You’ve just learned what doesn’t work. On to the next thing.

We gained validation. We have some new tools in our parenting toolbox. Most importantly, we were given a perspective that is not of the “beat the child into submission” variety, nor a hippy-dippy let the kid do whatever, whenever hands-off approach. More cooperation, less adversarial. Less controlling, lots of boundaries. More respect for sensitivities to overwhelm. For him, sensory overwhelm causes the tantrums and outbursts. Loss of control triggers anger. He’s not an angry child. He’s not a bad kid. He simply gets overwhelmed. It’s our job to continue to teach him how to deal with life as a sensitive person in a not-so-sensitve world.

Seeing the sun finally break the horizon, I sip my hot coffee. I take a deep breath and put the bacon in the oven. Kissing my husband off to work, I glance at the calendar to see what’s on deck for the day. It’s a welcome stark white space. A blank slate, a square with opportunity…24 hours of possibilities.

Hope.

I think I’ll start by doing a bit of writing…

Beyond Gratitude

Taking my son to the doctor has never been easy. Aside from the usual vaccinations which of course are unpleasant, from the time he had to have a blood draw at 18 months old, every appointment since has been awful. (The blood draw was done by a person who couldn’t find a vein – 4 times.) And by awful, I don’t just mean inconvenient. Awful to the point that he cowered on the floor hiding in fear under chairs, full on meltdown freak-outs. It was so bad at one appointment that the doctor recommended we have him evaluated for Autism spectrum disorders.

It was a crushing recommendation and one we did not take lightly. It is a horrible feeling knowing your child is terrified, and doesn’t trust you to realize that as his parent, you aren’t going to let anything bad happen to him.  Through the process (he is not on the spectrum) and his growth since that appointment, I am constantly reminded that he is simply a kid that does things in his own time. 

Fast forward to the past two weeks of all three of us being sick and we’ve been to the doctor for pink eye. It was as if he was a different boy. I told him that we had to go to the doctor for his eye. There would be no shots, but the doctor would have to look at his eye and ask me some questions. I also asked him if he would like to bring his favorite video to show the doctor. (He actually likes to just hold the DVDs!) It worked! He chatted up the doctor like they were old friends. I found myself feeling very proud, and overwhelmed with gratitude as I watched the interaction.

And then we had to go again today. (I’ve had enough, it’s been a week, my teeth hurt, and we aren’t improving.) Off all three of us traipsed to our new clinic’s urgent care. I was anticipating a frustrating appointment with all of us feeling yucky, waiting in a waiting room for who knows how long, and then culminating in Jake not cooperating. I wasn’t exactly trying to expect the worst, but rather bracing myself. I’m usually an optimist by nature, but I have learned by experience to expect the unexpected.

Again, I was humbled by and proud of his behavior. Luckily we were the only ones in the office, had no wait and both kids cooperated beautifully. If anything I am grateful for this round of sickness, because it gave my son two positive experiences with going to the doctor. It also helped that when the doc looked in my ear, both kiddos saw that Mama was fine, it didn’t hurt and there was no need to be afraid. Hannah fussed just a bit, but then Jake leaned up right next to her, rubbed her back and said, “It’s okay. You don’t have to be afraid. You can be brave like me.”

More than thankful, it goes way beyond gratitude.  Yes, it makes appointments so much smoother, but more importantly, I am thankful that my son seems to be letting go of fear.

Wonder-Full Wednesday: General Anesthesia Edition

So this week, along with moving and accepting a writing gig, we also had both kids in to see the dentist. Of course in our house, the dentist visits are quite the ordeal. So much so, that they both had to go under general anesthesia for their procedures. Oy. Reading the list of possible complications was like listening to one of those ads where the medicine they are selling will have side effects galore, and MIGHT cure the one thing that ails. (Restless Leg Syndrome, anyone?)

Watching my kids as they went under and watching them come out of GA, it got me to thinking. (Shocking, I know.) Thanks to powerful narcotics, here’s the parenting lessons gleaned from the day:

1. I am not in control. Ouch. Mistakenly, I often assume that Jake thinks the same way as I do. We forget as parents that kids haven’t developed the ability to reason yet. And, I’ve discovered, this point is exaggerated to the nth degree in my son. In his book, What Your Explosive Child Is Trying to Tell You: Discovering the Pathway from Symptoms to Solutions, Douglas A. Riley puts it like this:

“Explosive children are prone to make assumptions about what is going to happen in the near future. These assumptions – their mental road maps of the future-can be like little “movies” of what they think is going to happen next. Road maps get elevated in their minds to the status of 100 percent certain, totally gonna happen probabilities. When what the child believes is about to happen does not come to pass, his road map disintegrates. Parents who say that their child behaves as if his world has ended because they stopped at the drugstore when the child thought they were going straight to the grocery store do not understand just how right they are.  When a child’s road map does not come true, his world DOES cease to exist for a few moments. The resulting dramatic tantrum shows us how overwhelmed some children can become when faced with anything unexpected.”

Add in a shot (which all kids love!), extreme fear of dentists, doctors, and people messing with him, and voila! Primo meltdown! While I am not in control, my job as his mom is to help him navigate those maps and to understand that his world is, in fact, not coming to an end. Some days this is easier than others.

2. I am not alone. In response to my previous post, An Answered Prayer, I received calls and comments with other parents identifying some of the same issues. It’s been a somewhat frustrating journey in that we struggle to find some kind of label, because if we have the label, we can then begin to “fix it”. Not that we would wish this anxiety/explosive behavior on anyone or their child, there is some measure of comfort in knowing we aren’t alone in this. While in the waiting room, we chatted with another mother whose child exhibited many of the same behaviors as ours. In an odd way, it was comforting to share anecdotes and have her nod, and say, “Yep. Been there!” It’s a validation thing. I’m not crazy. I’m not a bad parent. He is who he is and I have to gain tools to help him navigate the world. And the extra bonus was that her son was a year older – she assured me that while her son was not without challenges, the growth between 4 and 5 was enormous and the recovery time from a meltdown kept getting smaller and smaller. Can I get a hallelujah for a light at the end of the tunnel?!

3.  Judge not, lest ye be judged.  I’ve said it before and I’m sure I’ll say it again. A little grace and compassion for that stressed out mama in the store goes a long (LONG) way. It’s too easy to make snap judgements based on a 3 minute interlude we see in an aisle. We don’t know what they are going through. For the most part, parents are doing the best they can. As Maya Angelou says, “When we know better, we do better”. Let’s all do better and extend a little grace.

4. Really. You aren’t in control. Yep. I did need this one twice, but for different reasons. When your child is ill, it can be so scary. Granted, this little adventure was a dental visit (fillings, crowns, cleaning, etc.), but its not such a stretch to imagine what could go wrong, complications or worse. We are fortunate to have had expert care for our children. Too often (especially with military healthcare) we are but widgets on an assembly line. I never once felt that way during this adventure. I had to trust them to care for our kids. I. Am. Not. In. Control. (Perhaps I might just be CC’d on the memo?!)

5.  Even with the same gene pool, same parents, and same environment, my kids are individuals. It’s amazing to me how different they are. But more than that, with the same basic procedure done for them both, how they were so true to their personalities during recovery. Hannah was her usual flibbertigibbet-self and asking for popsicles shortly after her procedure. Jake was sleepy and we had difficulty keeping him awake for the 2 hours after. He was irritated (ticked off!) that we kept waking him up, over and over and over! The next day, he still was a bit sleepy, not quite himself. She adapts well, recovers quickly. He needs a bit more love, a bit more time, and a lot more patience.

6. Play. I realized the next day how much I need to just play. Not all the time, there are times when dishes need to be done, the checkbook needs balancing, etc., but when they are sick, I go into Mama Bear/Protector/Caretaker of Sick Baby mode. When in this mode, my agenda just goes on back burner and I play. I’m present with them, not thinking of the 5000 other things I “should” be doing. I need to do more of that.

Not too bad, for a day (ALL DAY LONG) at the dentist. I am thankful that I get to be their mom. Despite any given challenges, I’m grateful my son was not born to someone who wasn’t willing to gain the tools to raise him without anger, violence, or ridicule. There are times I want to beat my head against the wall, to be sure. But I am grateful still. Somedays I think our kids “raise” us as much as we raise them. I wouldn’t want to be raised by any other 2 kids on the planet!

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An Answered Prayer

Since my son was born in 2008 he has been his own little person. He lets his needs be known. Sometimes loudly. He was not verbal until he was 3. Of course because of this (and many other behaviors such as only eating a narrow window of foods, extreme fear of doctors – to the point of full on tantrum meltdowns when anyone tried to touch him, weigh him or measure him, sensitivity to textures, etc.) our pediatrician recommended he be evaluated for autism spectrum disorders.

This process was an emotional one. As a parent, the first thought is defensive, “Screw you! There is nothing, nothing, wrong with my child.” But after the suggestions were made, and the realization that some behaviors do line up with pervasive development disorder or Aspergers, it hit home that maybe, just maybe there was cause for concern. Then I really started to notice other kids, and compare. How did they eat? Were they picky? How did their kid behave at the doctor’s office? How did they play with other kids? Were they verbal? At what age? And on and on and on…. A person can drive themselves crazy with the questions. Not to mention the questions of cause. Was it something we did? Ugh…that one will break you.

We made the appointment and were relieved to learn after 2 very extensive sessions that, to quote the wonderful doctor we met with, “we were not impressing him at all” with our child’s behavior with regard to it being on the autism spectrum. I’ve never been so happy to see my son “fail” at something! (I’ve never forgotten that doctor and how kind he was. I so wish he could have been our regular pediatrician.) Shortly after we were enrolled in Hawaii’s speech therapy program. A speech therapist came to our house 2 times a month and worked with Jake and I and “played”. And through play, taught me how to illicit speech responses from Jake. He now talks ALL THE TIME.

There has still been some lingering questions, however. We still dread going to the doctor and dentist. Dread probably isn’t a strong enough word. It’s traumatic for all involved. To the point that with the dental work he needs, he will need anesthesia. Food has been a battle for us since he started solids and the 20 or so foods he would eat, now is only about half that. We walked out of Sunday school a few weeks ago with me carrying him sideways in a full on freak out tantrum. I hugged him by the side of the car for 15 minutes until he was able to calm down. And as we walked out – all the other 4 and 5 year olds were happily sitting at the table doing their Sunday School craft. (As a side note – don’t judge a parent based on one tantrum you may see. You don’t know what that parent is going through or what that child may be going through. Yes, there are brats, and there are bad parents, but most of us do want what’s best for our children. Judgement of our parenting skills is not helpful.)

Part of me thinks, “Okay – he’s a “picky” eater. He’ll outgrow it,” or “His dad is hesitant to try new foods, he just takes after him,” and “Kids will eat when they are hungry – don’t make a big deal about food or it will become a much bigger issue.” “All kids tantrum, he is no different.”

Another epic food “disagreement” yesterday (it was so not pretty), and I’ve been racking my brain trying to figure out the key to my son’s lock. He’s changed them on me and I just need to figure out a way in. Yelling, threatening, ignoring, cajoling, taking away privileges, etc… none of that works. He eats crap. He is 4. He OF COURSE is going to gravitate towards the sugary, empty goldfish cracker crap kind of food. What 4 year old wouldn’t?! Heck, what adult eats what they should most of the time?! Most of us don’t.

Even though my weight loss journey and desire to learn about and eat only REAL food led us to cut out the processed junk from our diets, I kept making excuses and justifying when it came to junky food and my son. (We don’t let him drink soda, and juice is a once in a while treat and we keep junk food to a minimum). He refuses to try new foods and would rather not eat and will just go play. I give up, and give him the same food over and over (grilled cheese sandwich) because I would rather him eat something – even if it’s not the best option or he’s eating the same thing for days on end. And the cycle plays out over and over.

Today I came across this:

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And I almost cried in the bookstore as I was reading chapters that could have been taken from dialogue in our home. It describes behavior we experience daily with Jake. I came home and shared what I had found with Eric. He then told me that after our “disagreement” with Jacob yesterday, he had been praying for some kind of answers on how to deal with behavior and food issues.

I was looking for a cookbook when I came across this one. In a completely different section. Don’t tell me that God does not answer prayers. He does. And He did. And I am so grateful.

“What’s Eating Your Child? the Hidden Connections Between Food and Childhood Aliments: Anxiety, Recurrent Ear Infections, Stomachaches, Picky Eating, Rashes, ADHD, and More. And What Every Parent Can Do About It.” written by Kelly Dorfman, gives practical hands-on advice in a very applicable way. She outlines the E.A.T. program:

1. Eliminate any irritant, or in some cases unhealthy food, from your child’s diet. (In our case, that’s going to be large vats of milk that my son LOVES.)

2. Add one new food.

3. Try one bite of the new food. Trying one bite of the same new food every day for two weeks.

It takes an average of 12-15 tastes of a food before a person (adult or child) acclimates to liking a new food. In my case, I offered so many new foods and then gave up after the first, maybe the second, refusal. I think it’s what a lot of us do. We have a country full of picky kids eating the standard pasta, chips, crackers – essentially white processed garbage. The book outlines in detail why we crave certain foods, how sugar acts like heroin and is EXTREMELY addictive, as well as case studies that illustrate how nutrition plays a crucial role in health, development and behavior.

This process is going to be a tough one. Especially for my tough cookie. Hippocrates said, “Let food be thy medicine, and medicine be thy food”. The father of modern medicine was exactly right.

Now it’s time for me to learn.

It’s time to help my son.

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