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!

 

Two Years After Diagnosis: The Gifts of Autism

It has been a while since I have written, which is a shame since S has made leaps and bounds since last summer. He started school and he rides the bus. He pretend plays with toys (though still limited). He has started to really interact with other children. And, I am pleased to say that, he has really turned a corner in regards to his behavior. We can now walk in the store or at the park without my constant hand on him and he is just, overall, a person with more self awareness and self control. It has been a wonderful transformation and I regret not sharing all of that here with you. The past few months have been such a blessing of growth.

Amazingly, this week marks two years since S received his diagnosis. A lot has changed, both for us as parents, and for S during this time. Autism no longer seems like a big scary boogie man and so, I thought it would be nice to share with you what I feel are the gifts in raising a special needs child. Two years ago,  I never could’ve imagined finding gifts with autism. And while we certainly have our struggles, I have found that there are a lot of blessings that come with being an autism parent.

1. You learn to relate to other people better and have a stronger sense of empathy. I feel like I am better able to “meet people where they are”.   I am more patient with people who are slow at the checkout line, act differently than me, or seem rude or disconnected. I am just generally more accepting of others.
2. You no longer judge others’ parenting. (Well, obviously this doesn’t apply to those really horrible parents that lock their children in closets and stuff). But no, I no longer judge the mom whose kid isn’t wearing a coat when cold or will only eat chips at the restaurant. I now know that it likely isn’t lazy parenting, but a parent doing the best they can with a child who may have sensory issues. It is very nice to be free of judgement.
3. You never tire of hearing your child talk. When you have a child who you worry will never be able to talk, and they finally do, you never tire of their voice. I could listen to stories about skateboard jumps for six hours straight. His sweet little voice never gets old; I relish in every conversation.
4. Friends. You don’t know true friends until you have made some autism mom friends. If you are new on this journey, I suggest that you make this a priority. STAT. Trust me, when you have a special needs child, your friendships change. People you thought would be your big supporters, are not. People you used to hang it with a lot, you now only see on social media. Friends with typical kids or no kids at all, may try to be supportive, but trust me, they don’t get it. My autism mom friends have been my saving grace. When I canceled plans with a friend because S decided to eat an orange- rather than be irritated, she celebrated with me. They get it. They know the highs and the lows. They are in you and your child’s corner, boxing gloves on and ready to go, as you are for them. Some of my closest friends now are people I may have never formed a relationship with, had it not been for autism. For that, I will always be grateful.
5. Every day is a blessing. At the end of each day, when I tuck my child in bed, I am overwhelmed with joy and love for him and the day we have had together. He is such an amazing little guy and has brought so much joy to our lives. And while our days may often be filled with challenges and struggles, I am able to appreciate each day that much more.
6. You don’t sweat the small stuff anymore, and when you do, you recover more quickly. Before autism, I may have been irritated that an order I placed didn’t arrive on time or that the store was out of an ingredient I needed for a recipe. So irritated, that I may have even allowed it to affect the better portion of my day. Well, no more. Autism has taught me that little stuff like that isn’t worth investing any energy.  Let that little shit go. Wake up in a bad mood? No worries, another hour is right around the corner. I no longer have good days and bad days, I have good hours and bad hours. I’d much rather have a bad hour, than a bad day. Right?
7. You celebrate the small stuff (I know I just said that you don’t sweat the small stuff, but bear with me) Let me explain: You no longer seek perfection. Every step of progress is celebrated to the fullest- no matter how seemingly small it may seem to most. I bet most parents of typical kids don’t remember the first time their kid said ‘watch me’, asked a question or showed them something. Well, I do. And my heart swells with love and pride for my son every time he does those things, not just the first time. I notice and appreciate every interaction he has with someone, every toy he plays with and every time he tries something new. That my friends, is the best gift of all.

And so friends, if you are new to “Club Spectrum” and you are wondering what is in store for your child and your family over the next few years. Take solace in this… the next few years may have struggles, but they will also be filled with amazing gifts. Gifts you may have never known before autism. Cherish them.

What gifts has autism brought to you and your family?

Nothing Without Preparation: Autism and Spontaneity Do Not Mix

It sure has been a while since I have written… I’ve put on a ridiculous amount of weight over the last six months, and I’ve been spending my mornings furiously trying to work it off (9 lbs down!!). So, I haven’t had much time to write. However, lots of big things are coming up within the next few weeks and months, and so I am taking this rest day to get caught up.

Just to give you an idea on what we are up against, within the next few months we will:

1. Move
2. Go on vacation to the Ocean
3. Determine S’s eligibility for an IEP
4. Start two sport activities with other children
5. Have two new children start in his current class
6. Celebrate S’s 3rd birthday
7. Possibly switch all school and therapy programs or lose all services all together
8. Possibly place S, alone, on a school bus to go to school.

That is quite the list for any family with typical children; for children who need a great deal of preparation just to walk in someone’s home, this is a massive list. This list sends my heart beating out of control. This list has sent me to the liquor store more than once. We are in a major prepping mode. We are preparing for battle.

I’ve started easy… preparing for our trip to the ocean. Heck, at least this change is fun and is something that I am looking forward to, sort of. For most families, prepping for this might involve telling your child that you plan to take a trip to the ocean, maybe reading a story about going to the beach and then simply packing your shit and heading out for a great time.

Well, it ain’t that kind of party at our house. I’ve been prepping for weeks.

I learned our lesson the last two years… S and the beach- namely sand- are NOT a good combo. The ocean is such a huge sensory experience- for anyone really. I think that is why so many people are drawn to the ocean. However, for kids on the spectrum, especially those with sensory issues, it can be a sensory nightmare.

So, I started with a mini sandbox in the back yard. It took over two hours, across two separate attempts, to get S to put his feet in the sand. This was a MAJOR breakthrough for someone with sensory issues with his feet. Had I just taken him to the beach, with its seemingly endless land of sand, there is NO way he would’ve adjusted. That’s what happened the last two years. He just shut down and then melted down. By taking it slow in our yard, with a small amount, on his time, we were able to get him comfortable with sand. (In fairness, I even prepped him for the sandbox- watching videos, talking about it and buying him special  ‘sand shoes’ (water shoes) before going to get our sandbox).

Yes folks, I had to prepare him to start preparing him. 

We then moved him to a big sandbox at the park. We went with a typical friend, so he could see how much fun it is with someone he knows and trusts. I had then planned to take him on a mini trip to one of the smaller beaches in the area, but they don’t open for another two weeks. So now, we are watching videos on YouTube. (I LOVE YouTube- its like moving social stories for everything in life.) We were able to find one of the beach we will be visiting- so he can see the actual boardwalk, ocean, landscape, etc. I even purchased, and set up, a beach tent in our living room so he could pretend being at the beach and be able to recognize something familiar when we finally get there.

He seems excited… so I hope he enjoys it… we spent WAY too much time in our room last year because it was just too much for him. With all of this preparation, I certainly hope for a few hours by the waves.

I have been preparing for this trip for a few weeks now (we don’t go until the end of the month) and I started preparing him for soccer this week as well (he starts that next month). And, with our great big list above, I have so many other things to prepare him for… much bigger things. Most kids just start soccer, or go on vacation… but not ASD kids. They need to know exactly what they are walking into at all times… and there is still no guarantee of success. Its overwhelming really, and something I hope he grows out of in time. But for now, we will watch videos of people we don’t know playing by the ocean.

And hopefully, if all of this hard work pays off, we will be able to make our own beach videos soon.

Spring Break and a Lapse in Autism Symptoms

For most families, a break from school means time to spend with family, a few fun day trips and maybe the completion of a few much needed projects around the house. For families living with autism, a break from school means loss of routine and all of the regression that comes with it. It took us almost 3 months to recover from winter break, and anyone who knows me well, knows that just the talk of spring break literally made my eyes well and my voice crack.

I was dreading spring break like a death row inmate dreads the electric chair.

After-all, there would be days with family, day trips and things that needed to be done around the house. The loss of routine was sure to send our sweet little man out of control again. Just at Easter alone, we would have to enter a house- full of people- and then find eggs in the lawn. These things with autism seemed too overwhelming… almost impossible.

You may remember my post about my suspicions about the full moon and  autism and then my next post about the difference a day could make. Little did I know that starting that Friday, I would have a ‘typical’ child for one whole week.

Friday started out awesome, and it continued into Saturday. We watched a few social stories on Easter egg hunts and we took him to one at the local hall. I watched in amazement as he entered the hall with no tantrum, ran around with the kids, did crafts and… hunted for easter eggs!!! It was so awesome, that I took him to another community egg hunt an hour or so later! We even went and had lunch, in a restaurant, where he sat with me and ate.

The next day was Easter and as I mentioned in a previous post, I had several reservations. Mostly, having to walk into a family member’s house. S did great though, and walked in just fine! I was shocked! I stood in amazement as I was able to talk with family and eat food rather than deal with an hour long meltdown and chase him from the stairs for hours on end. He spent most of his time playing with a gift the Easter bunny had brought him (a BMX finger bike) and sitting with my 80 something grandparents… but, he was there… and calm… and confident. He also looked for eggs during the family hunt, and even found the golden egg!

Things went so well over the weekend, that I decided to potty train! I knew this was our last break for a while, and had been bouncing the idea around in my head for a few weeks. I was hesitant, since sitting in the house can be too much for S and he gets really stir crazy. Since he is so sensory seeking, I usually try to keep him out an about as much as possible throughout the day. But, since he was doing so great, we bit the bullet; and it turns out… S is a potty prodigy! He took to it right away and I’m glad to say that we have been diaper-free since we started.

The entire week of spring break was just fantastic. We did all the ‘typical’ things that most families do on a holiday break… we visited family, we did holiday traditions, we took road trips, we ate out, we had play dates and we hung around and spent some time together. He even walked with me in a store!

There was a period of time there, where I actually began to question S’s diagnosis. He seemed so typical. Things were so easy. We had lazy mornings and conversations. Could he have grown out of autism? It was like his symptoms just totally disappeared. Most shockingly… he sang. For the first time, ever, I hear my almost 3 year old sing. It was an amazing moment!

But of course, as the week ended, many of his autistic behaviors resurfaced; though, to a much lesser degree. And while S still very much has autism, he has in many ways matured that week. It is certainly a week that I will remember and cherish forever. And now, now I am not dreading his 3 week break this summer. Hesitant… but not dreading.

“It Only Takes One Time for Something to Become a Pattern”

“It Only Takes One Time for Something to Become a Pattern”. This was recently told to me by S’s OT, in response to some recent feeding issues we have been having.

I will back track a bit, so that you can get a better idea of S’s eating habits. From birth, S always ate great. At six months, S started solids and he was a champion eater. We did a modified version of baby led weaning and he took to most new foods, new textures and new flavors favorably. The only ‘baby food’ we ever really served him were those pureed veggie pouches- mainly because they were organic and convenient for travel and keeping in the diaper bag. He not only ate all sorts of things, but he had a taste for health food and would often snub ‘treats’- opting for watermelon over cupcakes, etc. Then, like most kids, he became a toddler and the usual toddler pickiness entered the scene. No biggie. Our pediatrician warned us about this and assured me that he would eat when he was hungry and that as long as he continued to grow, he was fine.

However, a few months ago, I began to notice a pattern. S was slowing dropping past favorites (pizza, spaghetti, grilled cheese, etc) and was seeming to prefer either foods that were dry and crunchy (dry cereal, crackers, pretzels, nuts, etc) or purees (smoothies, those veggie baby food pouches, yoghurt etc). In fact, the only thing he would really eat in between those textures, was a peanut butter and jelly sandwich. It hit me- my child is 2.5 and still eating like a baby- dry cheerios and baby food pouches. I brought this up to his teacher and she confirmed that S’s eating habits were likely regressing and he seemed to be developing a texture preference.

So, for this and a few other sensory reasons, S started occupational therapy to help introduce him to a wider variety of foods. I wasn’t too worried though- while his menu was limited in texture and variety, it was rich in nutrients. Its not like he was living off of chicken nuggets and soda. He ate low sugar, organic cereals and home-made veggie and fruit smoothies. He drank organic soy milk and overall, preferred healthy foods.

Then, S got sick. So sick that he vomited for 4 straight days, while sleeping on the couch, only waking to puke. He did not eat for 5 straight days. When his appetite finally returned, it was just for crackers and pretzels. And I was fine with that- the kid just puked for 4 days- he needed time for his tummy to settle.

But, it was too late. It only took the one sickness, a few days of eating crackers, for a pattern to develop. Now, now he only wants PB&J and cashews. He is snubbing his cereals, his smoothies, his soy milk. His OT has been working with him for several weeks now, and we are making progress. S will now tolerate non-preferred foods on his plate and will even touch them to get him to put them in his ‘all done bowl’. It is so interesting how quickly something can change and become a new pattern. It happened with bath time, with hair washing, with shoes, and now with eating and food preferences.

For now, S is starting to tolerate some of his old foods again- but still snubbing most. Hopefully soon he will regain his pattern of healthy eating, and in the meantime, we will still work with OT to reintroduce his old foods and slip in a few new ones.

And I guess that is one of the crazy things about autism. Kids on the spectrum are very routine oriented. Like most kids, they thrive on consistency and predictability. However, kids on the spectrum tend to become more rigid with the need for these routines. So, it really does only take one time for something to become a pattern, and you never really know what the next thing is going to be. That’s autism for you- every day is a new normal.

What a Difference a Year Can Make: One Year From Autism Diagnosis

I meant to write this post last week, since as of March 29th it has been one year since S received his autism diagnosis. If you like, you can read this post about S’s journey to diagnosis. And while we may not have known that S received his autism diagnosis until May- we knew in our hearts during that meeting in March. (can you say “new car” and “retail therapy” in the same sentence?)

This time last year, I was so struck with grief, anger and hopelessness, that it is painful to think back to that time. What breaks my heart, is knowing that right now, there are new sets of parents going through the process of accepting diagnosis and a new set of sweet little souls having to deal with this disorder.

So, for all of you new parents out there, who are trying to grasp the concept of living with autism and what that means for you child, know this: While autism has given my son many struggles, it has also given him so many great and endearing quirks that make him the awesome little dude he is. Autism has proven to not be as horrible as I first thought it to be- S has made leaps and bounds this past year and there are lots of things to celebrate.

And so, where are we now? What has this first year brought us?

Well, as a parent, I have good days and bad days. Not surprisingly, those are directly related to our son’s good days and bad days. I am, however, full of hope. Over this past year, S has closed so many gaps…

He has become verbal

He has some shared expression

He has learned his ABC’s

He no longer has frantic bouts with shoes or sleeves

He says “Mommy” and “Daddy”

We have even recently heard “I love you”

He has a friend

He can make eye contact

He is learning some social cues (thank you, excuse me, bless you)

He is starting to show empathy (kissing other’s boo boo’s)

And the list goes on.  This past year has brought S so much progress. And while there are still many struggles, it is easier to focus on the good- which is a great place to be. I will tell you one thing, you will never take any victory for granted. Each milestone is celebrated- no matter how small it may seem to others. Every step forward your child makes is a gift that you will cherish. As a parent, I feel that S’s autism has made me live in the now more- taking in every moment and enjoying my son to the fullest. That is a pretty awesome thing.

So, what will the next year bring?

Starting this month, we will begin to tour schools, as S is going to age out of his early intervention program. He will go to a 5 day a week class and have an IEP. He will take a bus and he will be away from me for 4 hours a day. Our little man is growing up and I know a new set of challenges lie ahead. I have become very comfortable with his early intervention team, and I am not looking forward to the change. But, I know that we must keep going forward… we have no choice, really.

While this past year was full of struggles it was also rich in victories. So, I can honestly say that I look forward to the coming year and what it will bring for S and our family. Here’s to a new year…

Holidays, Family Gatherings and Autism

Ah, Easter is coming! Easter is easily one of my favorite holidays. I come from a large Italian family and every year, we all get together at my aunt’s house to celebrate and spend some time with each other. The weather is usually beginning to break and it is just a nice time all around.

This is S’s 3rd Easter.

After this past Christmas, my expectations for this holiday are more realistic. I do not expect S to be excited for his Easter basket. I do not expect him to be excited to hunt for eggs (though, I will still give him the chance) and I do not expect him to be excited to go and do all of the typical Easter fare that most kids look forward to. There certainly will be no church.

And this year, I have some anxiety about visiting family. For starters, only two people in the family know of S’s diagnosis. And, while a few months ago, we decided to no longer keep S’s autism private, since then, we have only told one cousin. He asked.

As S gets older, his autism is a bit more obvious, and his ability to transition is getting more difficult. You may remember my previous post about visiting friends and family during a party; it was a rough start to say the least.

And so, Easter is tomorrow and S will have to walk into a house full of people… a house he has not been to since last Easter. No doubt this may likely be a repeat of the last time.  And if S does have the inevitable meltdown, there will be no more blaming it on a skipped nap or a long car ride. I’m not sure how it will be received. I expect a good bit of denial. A good bit of hearing how ‘normal he looks’ or how we need to get another opinion. Who knows, maybe they will surprise me and just ask a few questions and move about with the day. If I’m lucky, maybe said cousin already prepped the gang. Maybe I should’ve.

So folks, I shall take a deep breath and lift a large glass this year. Wish us luck! I will be sure to report back!

What a Difference a Day Can Make

Just yesterday, I blogged about S and his ‘off day’ the day prior. Every transition was difficult and his mood was sour. Then, yesterday, it was like a switch had been flicked and a happy, easy going boy rose from his bed.

Breakfast was easy. Getting dressed was stress free. We painted easter eggs. We read stories. We went for a walk. We saw birds in a bush and talked about them. We had a peaceful lunch, in a restaurant, with a friend… for an hour. We made dinner. We went for an evening stroll to the peeeepound. And, finally, we had a somewhat stress-free bedtime.

Yesterday was one of those days that was how I always pictured parenting a two year old would be. Fun with art. Fun with walks. Relating to each other throughout the day. Our little genius even told us that “P is for pour. K is for quack. S is for sailboat. K is for kite, and crock pot and crocks.” (Seriously, I have never connected these sounds for him before. These were not scripted statements… that makes him a genius, right?)

Either way, it is interesting what a difference a day can make. Most days are not as difficult as the day before, and very few are as sweet as yesterday. It sure is nice to have those good days though; and I know one thing, I will never take one for granted.

Autism and Hygiene: Fun Times with Stinky

This was a post that I had intended to write about a month ago. I am pleased to say that our struggles with S’s hygiene have, for the most part, gone away. I still feel that it is an important topic to discuss though, as many of S’s friends on the spectrum have similar issues.

S has always loved the tub, but sometime last fall he began to become very stressed at hair washing. I mean, he usually cried a bit at the hair washing/rinsing portion of bath time, but nothing alarming. You know, your typical toddler ‘I don’t want water poured on my head’ kind of deal. No biggie. We just washed it. But then, then it turned into panic. He began to develop such a great anxiety around hair washing, they he became scared of the tub, and soon- the entire bathroom.  So, sometime in last September, we stopped washing his hair.

Now, before you get all grossed out and call CPS on our family, allow me to explain. We were able to compromise by taking a soapy wash cloth and wiping his head, and then a clean wash cloth and wiping away the soap. We didn’t do this every bath- but once or twice a week. Was it a good scalp scrubbing? No. Did his hair feel clean and smell nice? Yes.  And while we were not thrilled with this method, it got the job done and we decided to pick our battles.

Enter February. For some unknown reason, S developed a fear regarding the bath. We don’t know why, but all of the sudden he was terrified of the tub. I’m not talking about just crying he didn’t want a bath- I’m talking about shaking when walking past the bathroom because he was so scared. It was so bad, he didn’t want me to shower or bathe the dog. Other hygiene issues followed- teeth brushing, hair combing, finger nail clipping, etc.

We consulted OT, and she suspected it was possibly sensory related and were given all sorts of things to try. We spent the better part of two weeks trying to get S comfy again with the tub. We washed dolls (he protested this) , played with water while in our clothes on the outside of the tub- etc. And while it was progress getting him into the bathroom, we could not get him into the tub.

Then, S got really, really sick. It was so sad. He was vomiting for 4 straight days and did not eat for a full 5. (the resulting issues with food will be another post.) Anyway, over the course of this time, S had not bathed in two weeks, and had now spent a week puking on himself and in his hair. We had no choice. We HAD to bathe him. OT suggested that this might be a quick ‘reset’ to the bathing issues. That since he was so sick, and so weak, that he might not have the energy to fight the bath.

So, in the bath he went. It was awful. He screamed, and cried and shook. He clung to me for what felt like forever when I finally removed him from the tub. He was so clean though and for the first time since September of last year, his hair had been washed.

It did NOT reset. He still hated the bath.

Finally, about a week later I found bath bubbles with a popular Disney theme on it that he loves. Turns out, some $4.99 bubbles were just what he needed to get over the hump. He took about another week of slowing introducing the bath again. But, he really wanted those bubbles. He now had something to work towards. It took a while, but he finally got up the nerve to get back in the tub. And with the return of baths, returned teeth brushing and nail clipping. We are still working on hair combing and *sigh* his hair has not been washed since February.  We still are not able to wash him with a wash cloth, but, my boy is clean (ish) and happy in the tub. And you know what?, I’ll take what I can get.

 

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.