Sensory Progress | A Whole New World of Fun!

I’m Back | Sharing the Progress

Image by S

I’m back!! (Well, hopefully anyway) I started this blog on S’s second birthday, and as we are quickly approaching his 6th (what????) I’ve been reflecting a good bit on the progress he has made, over the years. This, of course, led me back to my blog & I was surprised to log in and find so many comments, likes, re-blogs and shares. I’ve had several people message me to share their experience or thank me for sharing our story & so I felt it only fitting to get back into posting.

I’m Back | Sharing the Progress

When your child is young and you first start down the path of an autism diagnosis, it is a pretty scary time. It is filled with SO much uncertainty, as you have no idea what the new baseline of expectation is for your child.

You see, when you have a typical child, you have a reasonable expectation that they will potty train, talk  & grow up to graduate high school, find a career path, move out on their own and possibly start their own family one day. Of course, this is guaranteed to no one, but it is certainly a reasonable expectation.

Then, when your child is diagnosed with autism, that reasonable exception is completely re-set. Autism is short for “Autism Spectrum Disorder” or ASD. In short, it is a spectrum disorder and it is very difficult to assess what a child’s prognosis might be in their early years. Some children will make fantastic progress- learning to talk, use the restroom independently, go to school with typical children and lead relatively normal lives as they grow. And, for others, they may never do any of those things, while others fall somewhere in-between. It’s a pretty scary prospect for parents to read the “prognosis” and to have NO idea where their child may fall.

I know that for me, that was the most stressful part. Would I have a 15 year old in diapers? Will I ever hear him say “mommy” or “daddy”? Do we need to start planning for long term care, should our son never be able to live on his own? Who will care for him, once we have passed?

These are not fun things to think about, when you should be playing patty cake and making crafts with your little one. 

It’s been about 2 years or so, since I’ve last posted and I am BLOWN away at how much progress our son has made, in that time. I attribute this progress to the overwhelming amount of early intervention that was provided to our son. If you are early in this journey, take every ounce of therapy you can get for your child!

Since I last posted, our son went through two years of pre-school in a program designed for special needs children in the public classroom setting. This year, he started kindergarten in a fully contained classroom with two other children on the spectrum. Half way through the year, his class was merged with a typical classroom and the bursts of progress have been outstanding!

We are pleased to see that our son is a smart, funny, loving, kind, playful, active, attentive, engaged & affectionate little boy. He loves to learn, snuggle, explore & play. All. Day. Long.  Next year, he will repeat kindergarten in a fully included environment, with the support of a 1:1 aid and we just can’t wait to see where the year takes him.

Image by S

Our almost 6 year old is a talkative, potty trained, pre-reader with a love of camping, science, kitty-cats, spider-man, video games, hiking , taking pictures (see above)  and running. Is he still autistic? Yep. Does he still have struggles? Absolutely.

Do I have any reservations about him growing up to be a healthy, happy, well functioning adult in society? NOPE. 

We are now in a place where I have NO doubt that he will grow up and lead a full and wonderful life. And while I know that he will have challenges, I feel better prepared to help him overcome them and continue to grow into the amazing person that we call our son.

So, if you are new in this journey, I know it is scary. I know that the bar of reasonable expectation has been completely reset for your child and I know what an awful feeling that can be. But don’t lose hope and don’t give up. Keep fighting for your child… getting your child early intervention and moving forward. When given the proper support, our kids can do amazing things!

 

Sleep and Autism: Can These Words be Used Together… ever?

Well, it is 5:11 am. I’ve been up since 4 am. Why? Oh, well that’s because I go to sleep with my son at 9 pm. ugh.

With the exception of a 7 month period, S has never been a great sleeper. In his infancy he just had to be ON me in order to fall asleep… and stay asleep. I spent pretty much 7 straight weeks with him in my arms. No complaints though…  I loved every second of those newborn snuggles, and I wouldn’t trade them for the world. Around 3 months old, S started sleeping in a crib, but waking 2 or 3 times a night to nurse. He was easy to put back down, just rock and nurse and he would sleep a few more hours. Somewhere around 9 months, he started night nursing more, so we began co-sleeping. This lasted until around 22 months.

Somewhere around 22 months, S magically started allowing me to just lay him down for bed. It was great. We did bath, brushing his teeth, jammies, prayers, lights out and I would tuck him in and wouldn’t see him until morning. We could hear him on the monitor, babbling and we could see him playing with his nightlight, but he was still going to sleep on his own… even if it took 45 mins to 2 hours to fall asleep. Same thing for nap time. It was great… he laid down without a fuss and slept beautifully for about 7 months. Oh what a great 7 months those where! For the first time in 5 solid years… I was getting 8 restful hours of sleep a night AND an hour to myself before bed.

Pure. Fucking. Bliss.

Then, the devil known as ‘winter break’ arrived this year and the lapse in school sent S on a fantastically fun backslide. The biggest slide? Sleeping.

I now have to lay down with him to get him to sleep. And, if that wasn’t enough, it can sometimes take him up to two hours to fall asleep. We have tried adjusting his nap time and bed time, but to no avail. I finally contacted his early intervention team, and they sent out an OT for a follow up consult for this, along with many of his sensory issues.

The OT thinks that part of S’s sleep issues might be sensory. For instance, we have to be in a tight embrace for him to fall asleep. For his sleep issues, and other sensory issues, his team has now added a weekly OT to his service plan.

Now, our bedtime routine involves sensory brushes, jumping and joint compressions. I have to give him vigorous rubs with a towel after his bath and rub his skin while getting him dressed.

It still takes him at least 45 mins to fall asleep, and still sometimes up to 2 hours. And honestly, this is taking a VERY big toll on me.

I used to live for nap time and bed time. After all, I’m with S all day and quite frankly, mommy needs some down time. Not to mention, I am trying to run a business… I need those times for editing, blogging and client emails. I won’t even get started on the fact that for the last 5 years, I survived on 2-4 hours a sleep a night while I built my business… its my turn now… mommy needs me time.

Now, when I lay down with S at his early bedtime, *I* end up falling asleep with him… often before he falls asleep… and then I wake up usually around 3 or 4 and am unable to fall back asleep. So then, by the time bed time rolls around again the next night, I’m exhausted, and I fall asleep again… a viscously repeating cycle.

I’m tired. I’m cranky. I’m gaining weight. I’m exhausted. Did I mention that I’m cranky? And what’s worse? I’m becoming bitter. Bitter at S for taking away my down time and my long awaited good night’s sleep. And bitter at my husband for having homework to do and not being able to put S down himself.  How ridiculous is that? How can you be bitter at a sweet two year old and a husband that would walk to the end of the earth for you?

I’m trying to enjoy these late night snuggles… because, well, I know these sweet years are fleeting. Soon, S will no longer need his mommy like he does now and I know I will look back on these days and wish for one more snuggle.  But, this doesn’t change the fact that I am human… and humans require proper sleep and at least one opportunity a day to pee alone.

S’s OT has suggested melatonin. Now, I know that this is a naturally occurring substance in the brain and that giving this would just be a supplement. But, I am a pretty ‘natural’ person and I’m not big on pills and the like. I won’t lie though, this sounds rather tempting. But, for whatever reason, I feel like ‘medicating’ my child will make me a failure of a mother… even though I know that doesn’t make any sense.

I guess I might be more on board if S’s sleep issues seemed to be affecting him. But they don’t seem to be. He wakes up rested and happy from both nap and night time sleep. But it is affecting me. Deeply.

Either way, we can’t go on like this. I’m getting too old to run on coffee alone. So, now I have one more thing to research and worry about and I’m too exhausted to even think about it.

 

New Year, New Resolutions

Well, a new year is upon us! 2012 brought about many changes for our family… Our son, S, was diagnosed with autism before the age of two; I left one of my two full-time jobs to be better able to address his needs; my sister, and best friend, moved to the USVIs, and my husband and I decided to walk away from our home. To say that 2012 was a big year, with many changes and adjustments, is an understatement.

But, I look forward to 2013!

I look forward to being more comfortable and confident with S’s diagnosis. I look forward to starting our life in our new home, I look forward to more wonderful days spent with our son, and with any luck, I look forward to visiting my sister in paradise!

With each new year, new resolutions are made, yet few are often kept. This year; however, I plan to follow through as my only resolutions are to enjoy my son, right where he is… period; and to get more involved in our local autism community.

Bring it on 2013!!

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.

Shoes! Shoes! Shoes!: Is this an Autistic Sensory Issue?

“Shoes! Shoes! Shoes!” If I hear this exclamation one more time I *may* crawl out of my skin. For as long as my son has been wearing shoes, he has had quite the affection for them. I think I really first noticed something with shoes around a year of age. Well, I guess that is when the majority of his quirks started to come a bit more in focus. He LOVES wearing shoes. He also loves taking them off and then demanding that they be put right back on. At first, he just wanted them on… ALL. OF. THE. TIME. Bedtime, nap time, dinner time, snuggle time, bath time.

Yes folks, bath time.

Now, I could allow the sleeping in shoes and the snuggling in shoes… but bathing? No, no, you simply cannot wear your shoes in the bath tub. Oh the tantrums we have had over no shoes in the bath tub.

Eventually, the shoe issue moved from wanting them on all of the time, to wanting them on, but taking them off when he is stressed, bored or otherwise unhappy. Have we spent too much time in the car? Shoes must come off! Too long at the grocery store? Goodbye shoes! Did his favorite show just end? Well, better take those shoes off! And so the battle begins. This week, I made the error of purchasing S shoes that have laces. Based on his frantic reaction of absolute panic, you would have thought the laces were going to eat time alive. Lessoned learned.

Here is an average day involving shoes:

S wakes up, happy and babbling. I go into his room to find a happy, smiling boy, arms reached and asking for a hug. We snuggle for maybe a minute or two and then it starts… “shoes! shoes!” as he points in the direction of his shoes. So, we get out of bed and I start to change his diaper. The exclamations get louder and more frantic. He does not want to wait until a diaper change is over, he wants shoes on and he wants them on NOW. Obviously diapers, pants and socks all need to go on before shoes and, as the dressing process progresses, the cries for shoes get more frantic and more desperate. Eventually, we get to shoes and genuine joy and relief washes over both of us. We can now move on with our day.

Only, it doesn’t end there. Not ten minutes later are we sitting to eat breakfast when round two of “shoes! shoes!” begins. You see, if he is stressed during breakfast (maybe it took too long, maybe it’s not what he wanted to eat- you get the picture) he kicks off his shoes. However, since he always wants to have his shoes on, he then immediately cries in a panic (sometimes before he is even finished taking them off) for me to put them back on. It is relentless and exhausting. Refusing to put them on simply sends him into a frantic tantrum and further into the ‘autistic abyss’ and I’m not a fan of watching my child disappear before my eyes. So, I put them on. Only, anywhere from a few hours to as little as a minute later- the shoes are off again and the demands to put them back on have returned. Rinse and repeat about a million times throughout the day.

There have been a few times where I have managed to get him to watch tv, on the couch, sans shoes. All will seem well in the world until he stands. Here, he will immediately drop to the floor, grab his foot while screaming “foot! shoes! foot!” and banging his foot on the floor. He is frantic and sounds panicked- like he is on a sinking ship and the application of shoes is the only thing that will save him and his family from dying a painful death. It is heartbreaking. It is frustrating. It is something I have no idea how to handle.

Early in S’s weekly therapy sessions, I discussed these concerns with his teachers. We have tried slippers, sandals, footy pajamas (this was a freaking disaster) and all sorts of things to get his focus away from shoes. The slippers and the sandals worked for a while, but in the end, it always came back to shoes. At this point, S’s service coordinator has suggested scheduling a consultation with an occupational therapist, in hopes that they can give us a better perspective on how to handle the shoe issue, as well as a few other possible sensory issues that S may have… Long pants? Not gonna happen. Dirty hands? Better have a clean rag handy! Blanket? For snuggles only- don’t bother putting it on. And clothes? Well, just this past week have we gotten him to keep his clothes on all day and night. It’s nice to go to the grocery store without your child screaming “off! off!” while tugging on his pants and shirt.

I guess this is just one of the many added joys of raising a child with autism. The hard part, is figuring out what is just normal toddler behavior and what is the autism. I mean, if not wanting to wear clothes is just a part of S’s normal toddler development, than I have no problem putting my foot down and saying ‘no, you must wear clothes in the living room’. I will deal with the inevitable tantrum to follow. However, if there is some sort of autistic sensory issue that makes wearing clothes incredibly uncomfortable for my child, then no, no, he does not have to wear them while chilling on the couch with his family. So, how do I know which one it is? Where is my magic ball that tells me what my child needs? Or really, why can’t my child tell me what he needs?  Because really, at two years of age, my child should be able to communicate to us more than repeating a word twice in a demanding tone.

Being a parent is hard enough when you are just dealing with the everyday challenges of raising a child. When you toss in autism it becomes that much harder. S is much less verbal than other children his age (though, much more verbal than many autistic children his age- for that I am very thankful). However, because of this, I am less confident in my decisions with what I allow and don’t allow S to do or have. If I knew that a behavior was or was not related to autism, I think I could determine the best reaction and stick to it… but I don’t know.  Communication with S is pretty limited and, as a result, I am always second guessing myself. This makes it harder to be consistent and guess what? Autistic children thrive with consistency. How is that for a double load mommy guilt? Autism really knows how to play its cards.

Autism Comes with an Extra Portion of Mommy Guilt. MMMMMM…

So, once upon a time, a long long time ago, had you asked the 10 year old me what I wanted to be when I grew up, I’d say: a stay-at-home mom and a photographer. Well, 5 years ago, after having studied the trade for over  a decade, I opened my own photography business. I worked another full time job while I built my business and I did it, because while I knew we would never be in the financial position for me to be a stay-at-home mom, photography would allow me to be a work-mostly-at-home-mom. About 2 years into building my business, I finally became pregnant with S and I was more determined than ever to put my plan into action. For the first two years of S’s life, I worked two full time jobs. Go ahead, you can re-read that sentence. Yes, I worked two full time jobs while raising a baby. I averaged 2-4 hours a sleep a night, but it was all worth it… because I knew I was working for a better life for my child and my family.

Now, I am sure that many of you are working parents. And, as such, I am sure that many of you understand the concessions that you make with parenting when you are a working parent. Someone else is caring for your child for 45 hours a week and well, sometimes you just have to allow things to be done the way they do them. There is some mommy guilt for ya! Not only does working keep you from spending the time you would like to with your child, but you also have to compromise on your parenting choices for your child. As time progressed, and S’s issues came more into light, I felt it was even more critical for me to be home with him. While his daycare was fantastic- they were just that- daycare. They were not a special needs education facility and they simply did not have the time (nor was it their responsibility) to provide S with one-on-one communication therapy throughout the day. Every day when I dropped S off at daycare, I felt the guilt. Guilty that I was not providing him with the consistent level of therapy and interaction that he needs to help rewire his brain to function a bit more normally. As S’s delays became more and more apparent our determination as parents for me to stay home with him became stronger. This, I thought, will be just what S needs… someone who can be there for him all day, one-on-one, helping him progress.

So, last month, I quit my day job. I am now a full-fledged, self employed, full-time photographer. Now, that’s scary! It has now just been two weeks that I am home with S during the day and I feel like he is back sliding. Honestly, I’m not sure if I just didn’t notice just how much autism has affected our son, or if maybe he is regressing due to the lack of structure here at home. Either way, I’m only a a few weeks in and I already feel like I’m failing him.

So, let’s recap… When I’m a mom that works outside of the home? Mommy guilt! When I’m a mom that works mostly from home and gets to spend almost all day and night with her kid? Mommy guilt! Yay! How awesome is that?

You see, before S’s diagnosis, I would feel a small tinge of guilt if I turned on the TV instead of playing a game or allowed him to play alone instead of joining him. I felt that I was cheating us out of quality mommy/son time. There you have your standard, run of the mill, mommy guilt. Now, toss autism in the mix and you get a whole extra helping of guilt. Because now, now I’m not just worried about missing out on some fun Momma J and S time, I’m worried that my lack of interaction with him will allow him to slip further away or somehow increase his autism. And you know what? As much as I love being around my son, I can’t be ‘on’ all of the time. It is so tiring to turn every encounter into an opportunity to increase communication. Sometimes, I just want to play puzzles or play doh with my kid without trying to use it as a tool. And you know what? sometimes I just want to plop him in front of the TV so that I can mess around on Facebook for a few minutes or read an article or clean my kitchen.

All of this makes me feel like a shitty parent. And, while intellectually, I know that this is not true… it is how I feel. I feel this way because autism is the master at making you question your ability as a parent.

So, tonight I am going to write out a set schedule/routine for each day. S’s early intervention team is making us a picture calendar to show S what is going to happen throughout the day and to help keep me focused on maintaining a schedule. This stay-mostly-at-home- mommy thing is a lot harder than I thought and I feel guilty that I over-estimated my abilities.

When Autism Smacks You in the Face: Letting Go of the Expectations You Have for Your Autistic Child

Autism is an interesting thing. Some days, when it is just our little family hanging out, I tend to forget that our child has autism. Since every day we have together is our normal, it doesn’t really stand out. Our son is a pretty awesome little dude… he is happy, loving, affectionate, quirky and quite frankly- smart. Every day he learns a little more and surprises us with something new. So, sometimes, I actually have moments where I forget that S has autism. I’ll think, ‘sure, he’s quirky, but he just counted to 13… our kid must be normal’! Then, we venture into public… where there are other families and other children and it is like someone takes out a big, fat, gigantic autism belt and slaps you across the face. There is no denying autism when you are around other typically developing children. It is there, front and center, with big flashing lights and loud sirens- screaming “YOUR KID IS DIFFERENT”. Quite frankly, it sucks.

Today is S’s second birthday. Since S loves fish (or as he calls them ‘Ish! Ish’!) we decided to take our little family to the Aquarium- you know, an upgrade to our usual visit to PetSmart. S usually loves a good trip to PetSmart to view the ‘ish’ and ‘fogs’ and we just knew he was going to love the aquarium. We decided that since I now work from home most days, and will have more time to spend with S during the week, that we would opt to become members so that we can return throughout the year. We paid our steep $109 for the family pass and walked excitedly through the aquarium entrance. I’m not going to lie… I was pretty excited about taking S to see the ‘ish’ and had been for weeks now. I was looking forward to the bright, wide eyes and dropped jaw as he saw lemon sharks, sting ray and the octopus. I couldn’t wait to see his face when we got to the grouper, the shark walk and the jelly fish exhibit. I had this idealistic idea that S would be overcome with excitement and wonderment as he saw all of these amazing sea creatures for the first time, and then, before we left, we would take him to pick out a birthday toy from the gift shop. At least, that’s how I remember birthday trips to the aquarium when I was a child. However, my sister and I are not autistic and autism is a definite game-changer.

Instead, the wide-eyed glimpses of the fish were quickly replaced by S’s focus on stairs. S LOVES stairs. Anywhere we go… Storyville, friend’s houses, our house, the mall, you name it… S will find the stairs and be content going up and down them forever. S also found many other interesting things at the aquarium. There were benches, more stairs, doors, and pictures on the wall. S is also obsessed with skateboards. This kid can turn anything into a skateboard… a piece of cardboard, a nail file, anything really. I’m not sure what he saw at the aquarium today that reminded him of a skateboard, but he kept saying “skateboard” over and over again. Oh, and the ledges that they have for kids to stand on to view the exhibits?.. yeah, those were stairs as well. He just wanted to go up and down them over and over again… completely oblivious to the large eel or group of penguins in his line of sight.

As a parent who was excited to see the aquarium through her child’s eyes, this trip was initially pretty disappointing. Other families viewed the exhibits,  and parents pointed out animals to their eagerly attentive children and enjoyed watching their children look in amazement at the 10′ fish and tubes of jelly fish. S, well, he just wanted to run, climb stairs and look for skateboards. It is tough as a parent to have to let go of the things that you wanted for your child. Obviously, I wanted my child to enjoy the fish. My child wanted to climb stairs. Luckily, my wise and loving husband was there to remind me that it didn’t matter if S was in jaw-dropping awe of the fish. He was having a great time climbing stairs and running down the ramp. And, while that may not be what I wanted for him, he was truly happy and that is what is important.

Autism is a funny thing. Right now, my child is a pretty happy little guy- it is just that different things make him happy than most children. The hard part is accepting that as a parent. It’s tough and I know that it’s not over. Our little trip to the aquarium is just one of many trips out in public that our little family will take. There will be birthday parties, museums, play dates, trips to the park and, thanks to our family pass, many more trips to the aquarium to climb the stairs. And everywhere we go, there will be other happy families, going about their day, enjoying their time as they envisioned. And for us, there will always be autism, reminding us that our child is different.  The trick for me will be learning to enjoy it as much as our son does.

A Little of This… a Little of That…

Hello! I’m Momma J and I have decided to start this blog to document our journey in raising our son, S, who is affected by autism. I’ve been meaning to start this blog for a while now, and since today is S’s 2nd birthday, and it is also a fairly “high autism day”, it seems fitting that I finally start writing.

First, let me give you a little background. I met my husband, Daddy J, about 12 years ago and we have now been married for 8 years. He is my love, my rock and my best friend; I simply can’t imagine a better person with whom to share my life. In 2009, we finally became pregnant with a much wanted baby and have been over-the-moon in love with our little boy ever since. Our son, S, was born two years ago today… a happy, healthy, wrinkly, cone-headed little baby, after over 35 hours of labor!

I first noticed that S wasn’t hitting his social mile-stones at just a few weeks old- when all the books and well meaning family kept commenting on the joys of seeing your baby smile at you. S just didn’t smile. Eventually he did though, albeit several weeks after most babies do. I brushed off my concerns as ‘first time mom worries’ and just focused on enjoying my baby. Around 7 months, I noticed some ‘stimming’ with his hands. I expressed my concerns with his daycare mom, and she assured me that he was just discovering his hands. S also wasn’t much of a laugher. He was a happy baby- in fact, a very happy baby! He smiled a lot, enjoyed being with us and seemed genuinely happy. However, he didn’t laugh. He would smile, but never a giggle. Everyone would comment how wonderful the sounds of a baby’s laughs were, but I just couldn’t relate. Would our baby ever laugh? I expressed this concern with S’s former doctor, and I was assured by him that S was just ‘stingy with the giggles’ and that our baby was fine. I never did like that guy.

When S was 12 months old, well, just the day before his 1st birthday, I heard… “momma!” It was the best sound ever! However, I only heard it just once more a few days later and the word left just as quickly as it had come. S came to learn, and then lose, several words over the next few months and, at 16 months old, his new pediatrician suggested that we contact the Infant and Toddlers Early Intervention Program in our county.

One day, I will go into the whole backstory of S’s diagnosis, but that is another post for another time. What I will say today is that by the age of 18 months, he was evaluated and diagnosed with an expressive speech delay and accepted into the Early Intervention program. A child physiologist also came to evaluate S around that time, and we were told he was not autistic. However, just 3 short months later, he was re-evaluated and given a formal autism diagnosis. Apparently, all of our son’s adorable little quirks were ‘red flags’ or symptoms of autism. His obsession with shoes, skateboards, having a comfort object for different locations, asking objects for things rather than asking people, preferring to play alone, etc. – All things that we thought were adorable little quirks that made him so special… they were all signs that our son has autism. I cannot begin to express the range of emotions that a parent goes through when finding out that your child has been diagnosed with autism. Maybe one day I will be able to put that out in words as well. What I do know is our child may be quirky, but he is perfect in our eyes… he is perfectly quirky, and very, very special.

So, here we are… today… S’s second birthday and with a whole set of additional challenges outside of the terrible two’s. I’m hoping that this blog will serve as an outlet for me as our family journeys with S through life, and as place for other parents, whose children are affected by autism, to come and know that they are not alone.