Back Then

I remember feeling amazed and nervously excited when I descended the stairs in our tiny 2-bedroom apartment to tell my husband of 8 years I was pregnant. He looked up at me, “Really?!” Nodding, I confirmed what we’d been planning for about a year. We were thrilled.

I devoured all the books, the guided meditations that were supposed to help with birth, ate all the ginger things and was sad when I had to quit my job because of severe morning all-day-and-night sickness. Eventually I felt better with the aid of medication and tracked all the changes in my body and read details about the growing baby.

Over a decade ago, Jenny McCarthy could be seen all over spouting her doctor’s erroneous findings that vaccines cause autism. Back then, this was my worst fear; (and likely a fear of many parents-to-be) that something could be “wrong” with the life growing inside of me. I remember telling my friend at the time, “I pray that nothing like that happens to my baby.”

Jacob was born 4 days after our due date and was a hefty 9lb 11oz. He hit all the physical developmental milestones, had the most adorable smile, and was the center of our world. I struggled with breastfeeding and postpartum depression, but felt our “new normal” of life with a baby around 3-5 months.

As he grew, we noticed little things that, at the time, gave us no cause for concern. Things like his inability to be laid down on his back while asleep. He would startle awake and scream. We carried him and let him fall asleep in our Ergo baby carrier. We co-slept because as long as we were all getting sleep, the location didn’t really matter to us. He nursed and didn’t desire solid foods. Getting messy and exploring foods with fingers seemed not to be his thing but for just a handful of times. He wasn’t verbal until almost 3 after speech therapy interventions. We had taught him sign language and had developed our own unique way of communicating. We discovered his right eye blindness as we prepared for preschool and kindergarten. Jacob struggled at the dentist and doctor visits. We prepped him well in advance for changes in routine, as well as transitions from one activity to another. We adapted. We learned. We read and researched and asked questions.

Jacob was evaluated at 2, 5, and diagnosed with ADHD-inattattentive type (with Autism Spectrum Discorder verbiage in the paperwork, but not formally ASD diagnosed) at 8, and now at 10 we are looking forward to another comprehensive evaluation. His IQ is 133. He’s crazy smart, and loves to learn about things that interest him. He as a 504 plan in place at school for accommodations as needed. We are working with an occupational therapist who has taught us both.

Sitting in the car before an appointment, we were chatting before heading into “food school”.

“Mom. I want to work at Microsoft,” Jacob told me, veering off of whatever topic we were currently discussing.

“Really? Why is that?” I asked.

“Bill Gates is thought to be on the spectrum. Maybe I could work with him and help other people like us. Plus, I like computers.”

“I think you would be great at that.”

As he walked into the appointment it hit me how far we’ve traveled on this autism journey. How scared I was for him, and frustrated at times because life with someone on the spectrum isn’t always easy. I struggled (and sometimes still do) when people are judgmental or unkind, knowingly or not. He makes me laugh out loud at his literal way of thinking, his interpretations of figures of speech and his other little quirks. I love the protectiveness he feels for his sister. He has taught me compassion, patience, and to slow down and see things from another perspective, that different isn’t wrong, it’s just different.

Back then, I just didn’t know.

I didn’t know how much I could love another human. I didn’t know that autism spectrum disorder really sucks as a label because it doesn’t feel like “disorder”. I stopped asking the futile “Why?” and “What is the cause?” questions years ago. It doesn’t do any good and there are no satisfying answers. It just is. I didn’t know that I would one day be thankful for resources and knowledge and tools to help him navigate and understand the world.

I never thought that I would be thankful for autism.

That was then.


Advertisements

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.

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!

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:

Image

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.