Autistic Ramblings: Could it be a Possible Stim?

S was just 7 months when I first seriously considered that he might have autism. I remember the day exactly… the exact moment that it hit me. It was two years today.

Over the past two years, S has had a series of ups and downs… progressions and regressions. The progressions are always celebrated to the max, and the regressions always strike a fear in me that I cannot describe. Overall though, he has made outstanding progress and I often just marvel at how resilient and amazing our little man can be.

Lately though, S has started having some odd verbal behaviors. A speech and language pathologist came and observed him and has decided to add speech consult to his IFSP once a month. I told her about some of his random ‘statements’ he will make. For instance, one day we were on the elevator and a woman (stranger) complemented S on his hat… “I like your hat”. His response? “Need to reboot the apple TV”. WTF? The SLP didn’t seem to concerned about these types of ill placed statements, and simply said that he could be at a loss for an appropriate response, or, he might want to watch TV. Either way, she didn’t seem concerned. (as an aside, he now makes this statement every time we enter this particular elevator- no other elevators, just the one)

However, now these statements have turned to ramblings. It started at night. It used to be that while trying to fall asleep, S would flop and kick and flail and thrash for an hour or two until he fell out. Now, now he rambles.

Then, today, he started rambling during the day and I’m worried he is beginning to regress again. It really ramped up after a 25 minute meltdown he had today. Even my husband was concerned when he saw him. S had a glazed look in his eyes and a far off stare. And, he would just ramble… “kitty cat doesn’t have no tv… doggie goes arp arp… S snuggles blanken goes arp arp”. He also ‘meows’ frequently throughout the day… From the time he wakes up until the time he goes to bed. I would say that he meows for several minutes during each hour, if not more. Sometimes he will not answer questions, like what he wants for breakfast or what he wants to drink, because he is meowing. The meowing has been going on for a few weeks now, but the rambling is new. I’m not sure if this is a form of stimming or not.

I’m not sure what to make of it. It is in this light voice, that is almost a whisper. He sounds dazed, looks distant and makes absolutely no sense. I also noticed that he was using double negatives… which we do not ever use in the house… “kitty  doesn’t have no water”… definitely a speech pattern I have not heard him use before.

Then, as I was changing him for bed, I connected some of the ramblings. We frequently read “The Giving Tree” by Shel Silverstein. Tonight he was rambling “Sorry S, I don’t have any apples… I don’t have leaves… Sorry S, I don’t have a boat”. These are parts of the book, though, we have never interjected our son’s name into the story line… but he apparently has. I’m not sure if I should worry about this or not, but it is hard not to. It seems like just as I begin to feel comfortable with S’s autism, I begin to let my gard down a bit and start to feel our family is somewhat normal, something always pops up to remind me that there is nothing normal about autism.

So, I guess I will bring this up to S’s new SLP this week, and she what she has to say. He starts his weekly OT this week and that could not come at a better time. All of the sudden, he is snubbing baths, teeth brushing and hair combing. My kid is starting to get a little crusty.

In the meantime though, I will just hug him and love him and snuggle him as much as he will let me. Hopefully if I hold on tight enough, he won’t slip away.

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!

Progressing Through Autism

So, it has been a while since I have written, and for that I apologize. It is wedding season, and well, as a wedding photographer, that keeps me rather busy! I did take a bit of time yesterday and strolled through my previous blog posts. In doing so, I realized just how glad I am that I have started this blog. While we still have daily struggles with S, it is easy to forget the great progress he has made. When you are mid-tantrum, or struggling to get your kid to engage on the playground, it is hard to remember what things were like just a few short months ago. Going through the previous posts took me back in time and reminded me just how tough things were before S became verbal. Honestly, it makes today’s struggles seem like a cake walk.

For those of you raising children with autism, I might suggest you keep a blog or diary as well. On the rough days, it is a nice place to revisit and to see just how far you have come. With that in mind, I will make it a point to post more often, no matter how busy life gets. This blog isn’t just about sharing our story with other families, it is about reminding us of our previous struggles and triumphs and reminding us that we have many more to look forward to in the coming years.

 

 

“I Like Mommy”: Things That Make Your Heart Melt

S has never been much of a laugher. He was always a happy child, but we didn’t hear a real, true laugh until he was about a year old. My concerns over this were swiftly made lite of by S’s former pediatrician. “If he is babbling, you have nothing to worry about” he would say. Now I know better. S laughs now, but even though he is still very happy, the laughs don’t come very often.

Last night, while giving S his bubble bath,  I started to play a game where I would scoop up the bubbles in my hand and then give them a solid blow- sending them flying through the air and all over S. The laughter was contagious. I’m not sure I’ve ever really heard him laugh so hard for so long. And, as if this round of belly laughs from our sweet little boy wasn’t enough, his laugher paused for a second and while catching his breath he said:

“I like mommy”.

Heart. Melt. OMG.

Now for most parents of a two year old, hearing an expression- a verbal expression- of love might be something one expects or possibly even takes for granted. But, for a child that we thought would never speak, from whom we thought we would never hear those words, this was an amazing moment. I could have stood in it for an eternity. However, no sooner did S catch his breath that he requested more bubbles and we went back to our game. Fine by me- I could listen his laughter forever.

I’ve always known that S cares for us. It shows in his hugs, his smiles and even without those- in his happy demeanor. However, as a parent, it is still nice to hear it.

Sudden Verbal Explosion!: When Your Non-Verbal Child with Autism Begins Speaking

Until about two months ago, S bordered on being a non-verbal child. He knew a few signs… “more”, “milk” and sometimes “please”. He could also throw his hands in the air for “help”. He could say “up”, “hat”, “hug” and one or two other labeling words that really didn’t help us communicate with him. He did not say “mommy” or “daddy”, he could not say “hungry” or “hurt”, he really didn’t have any way, other than whining or crying to express what he wanted or didn’t want. This resulted in melt down after melt down and mounting frustration for all involved.

Parenting a non-verbal child is well, tough. I had another word I wanted to use, but I refrained. It is absolutely heartbreaking to see your child struggle, to see your child in pain, sad, angry, or scared and have absolutely no idea why or how to help him. Everything he wants, from something to drink, to I’m getting heat rash, to I want the ball, to I’m getting ready to throw up is not able to be communicated. This results in melt down after melt down and many a cocktail for mommy after bedtime.

About 3 months ago, S was enrolled in an early communications class through the Infants and Toddlers Program. The class meets two days a week for an hour and 45 minutes. Roughly 4-5 weeks after he was enrolled, we saw improvement. Soon, he was able to say “more”, “help”, “down”, “milk”. Then, just two short months ago, there was a verbal explosion! S now says everything from “waffle” to “octopus”, he can now tell me what he wants, from wanting to sit in his stroller, to wanting to play ball, to needing a snack.

Not to mention, I can’t tell you how awesome it is to hear two words we never thought he would say…”mommy” and “daddy”.

It is a pretty awesome thing, to be able to communicate with your child. This is something that most parents take for granted; I know that I never imagined the stress that not having communication would cause. I naturally always assumed that I would be able to communicate with my son… why wouldn’t I? I never dreamt that my child could have autism, that MY child would have a communication delay. That is something that happens to other people.

But, it did happen to our son. And, it is difficult, to say the least. S’s sudden burst of verbal communication has opened a world I was starting to think would never exist for our family.

The other day, S got a haircut (and a bad one at that). After he was done, the lady gave him a lollipop. Then, yesterday, S stood at the kitchen gate and asked for a “lollipop”. He was able to tell me what he wanted. Now, granted, we don’t keep that sort of thing in the house, so I did not have one to give him; however, I knew what he wanted and was able to offer a reasonable substitution, one that he accepted. All because we were able to communicate with each other. Just two short months ago, he would have stood screaming at the gate, while I offered everything from milk to sandwiches… having absolutely no idea that he was thinking of a treat he had earlier in the week. I can say that a ‘lollipop’ would have never crossed my mind.

There are plenty of other things too; all little things that add up to better days. From S wanting me to tickle him, to go for a walk, watch TV, color, read a particular book, see daddy or play bubbles. Each one of these things that he is now able to communicate, results in one less melt down. Less melt downs equal a better quality of time spent with each other.

Rather than playing the guessing game, we are playing actual games. We are getting to know each other better and I feel that I can better relate to him than I ever could before. Now, what else can I say about that?!