Perfectly Quirky

Raising a Person with Autism

Month: December, 2012

Ho Ho Ho: An Autistic Christmas

This is S’s 3rd Christmas. At his first, he was only 6 months old… so, Christmas went pretty much as we had expected. Family came by, we helped S open his presents under the tree. We took photos and enjoyed our first Christmas together as a family of 3. The next day, we found wrapping paper in S’s diaper, and as we chuckled, we talked about how much fun the following Christmas would be. S would be 18 months old for his second Christmas, and we imagined he would be excited to tear into presents and play with his new toys.

However, when next Christmas came, S had been ‘disappearing’ at an alarming rate. He cried when he came down the steps and saw the gifts under the tree and he was pretty much only interested in the shoes that Santa had brought him. Shocking. Again, we enjoyed our time with him and talked excitedly about our anticipations for next Christmas, when at two and a half, S would really understand Santa and wake up eager to tear through his gifts.

Enter Christmas 2012. I had spent weeks ‘preparing’ S for Christmas. We talked about Santa and how gifts would be left under the tree. We watched How the Grinch Stole Christmas, read books and went to see Santa. Again, Christmas morning came and S was completely overwhelmed by the whole thing. Santa brought him two new pairs of shoes and a tent. It took almost 2 hours to open gifts (with me just opening many of them for him) and S spent most of the time changing his shoes, hiding in the tent and playing with his trusty skateboard.

Santa had brought him so many cool things… a new skateboard bedding set, art supplies, puzzles, games and a train set. All of which S barely even noticed. If anything, he seemed disappointed that there were no ‘skateboard T-shirts’ inside each box. It was all about his shoes, his tent and his skateboard… well, until we got to the final present under the tree. Strategically saved for last, and hidden under the back of the tree, was a mini Tech Deck skateboard ramp.

We lost him for the rest of the day.

Once again, we were left mildly disappointed with S’s mostly indifferent, and almost negative, reaction to Christmas. When was our child going to become excited about Santa and gifts and new toys? Did he even notice all of that cool stuff that Santa brought?

It wasn’t until nap-time came, when I asked him what blanket he wanted (he choses a different one almost daily) that I realized that S pays closer attention that we realize. He immediately asked for his “skateboard blanken”- which Santa had brought with his new bedding set. I was shocked. He HAD noticed the cool things Santa had brought for him and he did want them… just in his own time.

Over the next few days, S initiated play with many of his new toys and we have had many hours of fun playing together.

While Christmas with autism may not quite be what we expected, it was still a joy. And, for next year, I will place no expectations on how things will go. Santa will come and we will enjoy our time with S, regardless if it takes 10 mins or 2 hours to open gifts.

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A Day Without Autism: A Mother’s Dream Come True

During my last post, I talked about just how far we have come since we started this journey a year ago. It was just about six months ago, at S’s 2nd birthday, that I started this blog to document our journey. You may remember one of my first posts: When Autism Smacks You in the Face where I recounted our trip to the  aquarium. Much like any other public outing, our trip to the aquarium that day was rife with autism.

When I dreamt of having a child, I thought about all of my wonderful childhood memories and how I looked forward to sharing those same things with our child. When we learned that we were pregnant with S, I imagined all of the fun things we would do… the arts and crafts, the day trips, the play dates and all of the other special mother/child times that I imagine every parent dreams about sharing with their child. And don’t get me wrong… we do those things daily. We have several fun outings a week to the local children’t museum or the library. We visit the aquarium often, have play dates, do crafts, bake cookies, and we even participate in a weekly ABC class together at the local elementary school.

We do tons of fun things together. But sadly, I often feel like we are not really ‘together’.

In reality, I feel that much of our time is spent with me managing S. There is lots of preparation before our outings to make sure I have amble snacks, toys and other things to prevent meltdowns. While this may be typical for most parents of toddlers, I find that while we are out and about, Iam constantly trying to ‘read’ S’s mood to see if I can gage what his reaction will be for our next activity. I often find myself on edge, anticipating the inevitable meltdown and how I will plan my quick, but polite, escape. With all of this added anxiety, I find that I am not really ‘present’ with S. Sure, we are out doing fun things together, and posting fun pictures on Facebook where everyone thinks we are having a grand time together, but in reality, I know that we really aren’t ‘together’.

S is usually wrapped up in his skateboard, or the stairs, or a sign on the wall- completely oblivious to the super fun activity that the other children his age are enjoying…  and I’m just on edge hoping we can make it to nap time sans meltdown.

I’m still learning how to enter his world and to let go of the expectations that I had for motherhood. I’m learning that it might not be about baking cookies and fun trips, but really about how to make that tech deck to a really cool trick… again. I’m not going to lie, this is a hard adjustment and one that isn’t coming easy to me.

However, last week, I got a fantastic treat.

It started with a typical morning at school. After class, I knew we were going to do something, but I just didn’t know what. So, just for fun and expecting no usable response, I asked S what he wanted to do. Much to my surprise… he answered!

“Want go taco store.”

I was floored, and off we went! We enjoyed a nice meal together… it was great. After the “taco store” (Chipoltle) I then asked what he wanted to do next. Again, he answered!

“S go aquarium, see fish.”

Shocked again, we were off to the aquarium. At this point, we have been to the aquarium countless times. Usually, I enjoy looking at the fish, and S enjoys jumping on the stairs and running down the ramps. But this time, well, this time was different. WE looked at fish, WE looked at the turtles, WE did things TOGETHER. We shared glances, excitement and wonder. I finally saw his wide-eyed gaze as the sharks swam by and watched him giggle with excitement at the puffins splashing in the water. He high-fived the greeter on the way in and out, he held my hand, told me stories about what the fish were doing and not once, not once did he get wrapped up in the stairs.

For 4 glorious hours last Wednesday, I finally got to experience motherhood as I always imagined it would be. I felt so present with my son and so connected to him. Our day was not spent with his autistic obsessions and my uneasy anxieties of managing his behaviors.

It was just us, mother and son, enjoying a  meal and a trip the aquarium, together. It was one of my most favorite days of all times. And while I could hit rewind on that day forever, I know that it is more important for me to learn to enter S’s world and enjoy him, everyday, for who he is, for these days are few and far between. I need to learn to redefine my expectation of ‘together’ and learn to truly enjoy every moment with him, no matter how different they are from my expectations.

Has it Really Been a Year Already?: A Not-So-Quick-Recap on the Last Year

So, S’s early intervention team scheduled his annual review for this past week. It’s crazy to think that a whole year has past since we started this journey. Even though we did not receive a diagnosis until March of 2012, it was at this time last year that S was at his worst and regressing rapidly. I’ve never really told the story of S’s diagnosis, because honestly, it is a rather long one, but I figure now is as good as time as any. I won’t go into detail with all of the super early stuff, but I will recount the ‘ah ha’ moments where we just *knew* that something was off in S’s infancy.

Looking back at S’s infancy, there were certainly signs. However, many of them were dismissed as first-time-mom paranoia, and I went on enjoy my little boy as if nothing were amiss. I figured that all kids develop at their own pace and that he would smile and laugh when he was ready. As I’ve mentioned before, S’s former pediatrician dismissed my concerns of S’s lack of laughter. I thought it was great how ‘serious’ he was and what a ‘good baby’ he was when I took him places. Physically, S was right on track with the walking and the crawling and all of the other mile stones you anticipate with your children. The day before his first birthday he said “momma”. We heard it only once or twice more and then the regression began. Other words came and went and, at S’s next appointment, I expressed my concerns with his NEW pediatrician. She said that if S didn’t develop and hold 10 words by 16 months, for us to call her. Then, at the time S was 15 months, my husband and I both had to go out of town on business for 4 days.

S was left in the care of my sister and mother-in-law and he also maintained his routine at daycare as usual. It was a trip we no longer wanted to take as I think we could sense things were not going well with S. Unfortunately, we were contractually bound to go and we kept thinking that we were just being crazed first time parents and that S would be just fine. After all, it is only 4 days and he will be with very safe and loving family.

Boy were we wrong.

Almost immediately after our return S regressed. His thumb sucking increased to a point that he was breaking out in sores and he couldn’t play with toys because he wouldn’t take his hand out of his mouth. At daycare, he would hide in the back room, away from the other children, and suck his thumb while staring at the wall. He didn’t want to be around anyone. At home, he would stare off into space and you could, quite literrally, snap or clap your hands in front of his face and he would just stare right past you… sucking his thumb, like you weren’t even there.

We were watching our happy, bubbly little boy just disappear before our eyes. It was like every day a little more of him was slipping away and we had no idea where he was going. I was fearful that soon, he would just be a shell of a boy- a body- with him so deep down in there we would never reach him.

Heartbreaking is an understatement.

The feeling I had of being out of control while my son disappeared further and further into himself is indescribable. It was so weird to be able to physically touch him and to still feel that he was slipping away. No matter how tight I held, I couldn’t hold on to him. I would not wish this on my worst enemy.

So, we called S’s pediatrician and she referred us to our county’s Infants and Toddlers Program. They did an initial evaluation for his speech delay and determined that he just barely qualified for the program. He just squeaked in at just over the minimum 25% delay required for acceptance. For this, I will be eternally grateful. Not soon after his acceptance, he was disappearing at a faster and more alarming rate. It was then that I asked for additional support and instead of a Speech and Language Pathologist, S was assigned a special education teacher. His teacher, E, has been the most amazing support through our journey.

Calling the early intervention services in our county was THE BEST THING we have ever done for our boy. The results we have seen in the last year have been outstanding.

In fact, S entered the program in December of 2011. The following month, in January, he was seen by a child psychologist  and we were told that S did NOT have signs of autism at that time.  By March, I actually was considering pulling him from the program. I thought that he was making so much progress, that we were utilizing services that our son no longer needed. A 45 minute follow up review with the child psychologist and the rest of S’s intervention team was called for March 29th. I honestly thought that they were going to tell me how great things were going and that S no longer required services.

As the meeting quickly passed the 45 minute mark and then crossed to well over 2 hours, I started to realize that things were not going well. All of the adorable little quirks our son had were not just adorable, they were signs of autism. I won’t lie. I left that meeting depressed. I felt that the rug had been pulled out from under us. They saw things we didn’t didn’t see- lack of joint attention, no parallel play, not responding to his name, attaching to odd objects, sensory issues, the list goes on.

I was so depressed that the very next day, I took retail therapy to the max and I bought a fucking car. I’m not kidding.

At the time of the meeting, I asked flat out if our son had autism. My simple yes/no question was met with a long and wordy answer that did not contain a yes or a no. For this reason, my husband and I were under the impression that a formal diagnosis had not yet been made. It was not until May, when I was in a parent group meeting that our psychologist attended that I learned that S had indeed been formally diagnosed with autism. I was in a public hallway when I received the news and it was everything I had to hold it together.

In reality it was just confirmation of what we had really known all along. Even during the few weeks that I considered pulling S from the program, I knew things weren’t right.

Denial is a crazy thing.

What I can say is if you are suspecting that your child is developing differently than he or she should be- is don’t wait. Don’t burry your head in the sand. AUTISM IS NOT A “WAIT AND SEE” DISORDER. Autism needs early intervention, and because of early intervention our son has made progress and closed gaps that astound his intervention team.

I’ve heard so many parents in the parent groups express guilt that they waited so long to seek help. They felt that their kid would ‘catch up’ in his own time. They didn’t want to make a mountain out of a mole hill and call in for services that their child didn’t need. And most of all, they didn’t want anything to be ‘wrong’ with their baby. And really, who does?

But I’ll say this, Daddy J and I had a lot of same reservations. However, on the advice of our pediatrician, we took the ‘better safe than sorry’ approach and our boy has flourished as a result. If you have any suspicions at all- just call and get an evaluation. It is free and you will find a world of support you never could’ve dreamed of.

And here we are, a year later. Looking back, this has been one of the hardest, and yet most rewarding years of my life. When you have a special needs toddler, your world is shaken in a way you can’t imagine. The hopes, dreams and expectations you have for your child need to be rewritten. Your daily life and ‘to do’ list is undeniably different than those parents of typical children. But, it is also very rewarding. Seeing the progress in S this past year just fills my heart to the brim. I cherish every day, even the rough ones, as I am just so grateful to have him here, healthy and smiling. Every new milestone is a true celebration, as I am all too aware what might not have been.

You take nothing for granted.  Autism has given our family the ability to appreciate every moment and every interaction with our son, no matter how small. In many ways, this is a gift.

So, looking back on this past year is quite amazing really. Not only has S made progress in his communication, but we have made progress in accepting this diagnosis, and we are now able to enjoy a life with our son we had started to think might never be possible. I know that future years will hold their challenges, but more than anything, I know they hold growth for our family.

Echolalia and Autism: Fun times

Before S became verbal, communication was mostly in the form of gestures and my super-hero ability to mind read. It seemed that most days, my job as mommy was either preventing a meltdown or racing to figure out how to stop one. And, since most of his meltdowns were caused by his lack of ability to communicate with us, it was frustrating and heartbreaking to all involved. My heart goes out to any family struggling to communicate with a non-verbal child.

After the verbal explosion, a whole new world of communication was opened, and for that, I will be eternally grateful. I can honestly say that I don’t think I will ever tire of hearing my sweet little boy’s voice. I don’t think I will ever be annoyed by the 100th “moooommmmy” when he wants something. And, I simply can’t imagine never wanting to have a conversation with him- because right now, that is something I’d love more than anything.

You see, while S is great at communicating his needs and likes, his conversations are not very meaningful… they really aren’t even conversations as much as they are statements. “I like french toast” or “I want juice” is just a statement. Does it have meaning? Sure! Is it a conversation piece? Nope.

With the verbal explosion, S has developed echolalia. Echolalia is basically the parroting of words and phrases heard by others. S will hear me say “Hi S” and instead of saying “Hi Mommy”, he will say, “Hi S”, just repeating what he has heard me say. Often, when we ask him a question that has two options, we have to put the least valuable option last in an attempt to get him to not parrot his answer. For instance, “Do you want to go to the playground or take a nap?” Sometimes, he will just say “take a nap”, not because that is what he wants, but because that is the last thing we said to him. It is obvious, as he grabs his coat and heads to the door, that he wants to go to the playground.

So, next week, S will be observed by a Speech and Language Pathologist. She will come to observe him in class and then hopefully be able to give me and his teachers some pointers on how we can help S further develop his language skills.

I know I long for the day when I can have a meaningful conversation with our boy. He is so sweet, and so smart and I just know that there are so many thoughts going on in his little head. I can’t wait to hear all about them!

Networking for Autism: Making Friends

As a small business owner, I understand the power and importance of networking as it is critical to success for most small businesses. However, I never really thought about ‘networking’ in regards to autism. What I have found, is that over the past year or so, I’ve had a lot of trouble connecting with other mommies- mommies of both NT and children with autism. We don’t discuss S’s autism with many people and only a handful of our close friends and family know. Sadly, I can’t even say that I have many close friends.

When I was in my late teens, most of my friends got into drugs and so I created a lot of distance from those people, who at one time were some of my nearest and dearest friends. As they drifted out of my life, I got busy with work, school, a husband and building my own business.  As such, I really didn’t take the time to forge many new friendships. My husband and I are late-in-lifers. He is in his 40s and I am in my mid 3os. Most of our friends our age have children heading into middle or high school and most of the mommies that I meet on the playground are in their early 20s. This makes it rather difficult for me to meet new mommies that have similar interests as I do.

Recently, I attended my first autism support group meeting at our local autism society chapter. I have put off going, as I mostly expected it to be a bunch of stressed out families bitching about their lives. However, I was pleased to find a diverse group of families, all coming together to bounce ideas, strategies and concerns off of each other. They had a guest speaker, a child psychologist, that came and spoke on the topic of “making friends”, which was rather ironic, since that is the exact reason I decided to finally attend. I so want to make friends with other mommies and put S in safe environments to make friends with other children. So, I was excited to learn that our local chapter offers monthly autism-friendly social events for its members. This month, will be a Build-A-Bear workshop at the mall, before hours. I’ve signed us up for the event and I really hope to meet some other families that have an idea of what we are going through.

So here I am, networking or really, friend dating. And quite frankly, I’m so over it. It shouldn’t be this hard. But, I guess nothing is really easy with a special needs child. Hopefully, I will be able to find other families that can relate and we can help make it easier on each other.