Lala ~ Little Man’s Anchor During Toddlerhood

Before we knew that Little Man was autistic and very delayed we had a year or so of uncertainty. He seemed okay. He smiled a bit. He was pretty quiet most of the time but his older sisters would make him cry now and again. They thought his pouty lip was adorable. He was cute as ever. Everything was okay and then again it wasn’t. He wasn’t really talking, but he said a few little words like “Ma” “Da” “Ni” as an older baby. What we were mostly missing was the connection. It’s really hard to describe and back then we really weren’t sure what was missing other than something was off with our baby boy.

Little Man was 18 months old at Christmas. We got up and waited for daddy to get home from work so we could open presents. Daddy was working the graveyard shift. Grandma came over and we set out to do what we normally did every Christmas morning which was to tear into gifts and have an hour or so of complete chaos before winding down and settling down for the day.

What was different this particular year what that as the girls were tearing open gifts and being crazy and loud and as we were helping Little Man open his gifts he didn’t seem to be enjoying it. He wasn’t crying or fussy or mean. He had a scared and confused look on his face. He was completely overwhelmed with what was happening around him. He didn’t meltdown but he couldn’t process the chaos of noise and wrapping paper and presents going on all around him. I held him on my lap as this was going on. Finally we helped him open one of his gifts. It was a yellow Telatubby ~ Lala.

He grabbed it and hugged it to himself like an anchor against the crazy. From that day forward he carried Lala all over the place by the curly cue on top of its head. Lala became his security blanket against whatever was troubling him. It became ratty and dirty but it was so very important to him. He was even holding Lala during the his adoption proceeding that following summer. Lala was a very big deal in our house.

We may never be able to fully understand that feeling of sensory overload and that sense of being completely overwhelmed but it was clear that Lala was helping him deal with his struggles that day and continued to help him for several years after that.

Lala

The Hairdresser Hangs Up Her Shears

To the hairdresser who cut our son’s hair so many years ago. We are so sorry. We had no idea he would react that way. We were as traumatized as you and we still had to take him home with us so just remember that. We had all of the haircuts after that to survive and you only had the one. I hope you didn’t hang up your shears after that day. You seemed like a nice lady. I haven’t ever seen you in any other salon since that day. Maybe you moved away and vowed to never cut children’s hair again.

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We took our son for his first haircut at the local mall when he was seven-months old. This was before we had any indication of autism or delays or learning disabilities et al. He was just a cute baby with blond hair that was getting too long. He sat like a big boy on the booster and the haircut was uneventful. Fast forward to toddler boy’s next haircut at a different walk in salon. We thought he would handle it as well as he did the first time. WRONG! Oh how wrong we were. He did fine until the first snip. He started to scream and wiggle. We tried to calm him in every way imaginable. The crying/screaming wouldn’t stop. The stylist had to keep going. We couldn’t take him home like he was with a few snippets of short hair and the rest a hot mess. The stylist’s hands began to shake. She had sweat on her brow. (I’m not making that up.) She snipped her own finger with the razor-sharp shears. She had to stop and bandage it, but I could see through the bandage that it was still bleeding a lot. She didn’t say a word. She had this look of terror on her face that I haven’t forgotten in 16 years. She eventually finished the haircut and we shamefully got out of there as quickly as possible.

OH MY GOSH! That still ranks up there pretty high on the most traumatic events of Little Man’s upbringing. It was years before we could take him back to a salon and have his hair cut by an actual stylist and not mom or dad. I think is was a combination of the snipping sounds of the scissors so close to his ears and the feeling of the hair falling down on him. It was sensory overload. Eventually I resorted to cutting his hair while he was sleeping once his beautiful blond ringlets were too long to be cute on a two-year old boy. Had he been a girl, I would have let them grow. Some things should be left to the professionals.

You know, “Don’t try this at home!”

I don’t recommend it. I did manage to keep it at a reasonable length and not so horrible that he got pointed at in public but that was about it. His dad eventually started to shave his head with electric shears but that was a crap shoot too. He handled it better than the first hair cut, but it was still an ordeal. It always took a lot of negotiating to get him to get his haircut. We couldn’t give him a lot of time to think about it. He would get so anxious and scared until it was finally over with. It took years for him to come around.

I’m happy to say that he now drives himself to the salon and gets his haircut the way he likes without any prompting from mom or dad. There is hope my friends. Keep at it!

Happy Autism Awareness Day?

April 2nd is Autism Awareness Day.  I have mixed feelings about this event.  I’m so very glad that it has become something that is talked about and becoming familiar to the rest of the world.  When Little Man was small the Spectrum was so isolated.  No one understood what we were going through, and we didn’t truly understand what our son was experiencing.  When he was little an unable to communicate, it was like torture for all of us to understand what he needed. My son being tortured most of all. The inability for a parent to provide what a child needs is heart breaking.  Parents are the people who are supposed to know their child best, yet some days we didn’t have a clue what to do.  The days when your two-year old is melting down and heartbroken and you have tried everything you can think of, but the tears don’t stop. Those are the days on the Spectrum that I wouldn’t wish on anybody.

Flash forward a decade or so and now Autism Spectrum Disorder is almost popular.  It pops up on my Facebook wall in some way every single day.  The statistics keep dropping.  It used to be 1 in 150 kids being diagnosed.  Now in the most recent press release from the CDC it is 1 in 68 children.  I’m not even sure if that includes the diagnosis of PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) which for us has my son having many of the traits of Autism and Asperger’s both.  If that diagnosis isn’t included, the number would actually be lower. Its troubling and yet oddly comforting to know so many other families deal with this just as we do.  We are not alone.  We never were alone even though it felt like it at the time so many years ago. It’s like being on a deserted island late at night when the house should be slumbering and your child is melting down because he can’t go to sleep and you haven’t networked on the internet with other ASD parents because you don’t know that you can actually do that to get support and answers.  You don’t know there is a way off the island.

We know so much more now.  We are grateful beyond words that the internet holds so much for ASD parents and their families for networking, support, and answers.  Oh how I wish I knew about all of that when Little Man was two years old.  Which is why I want to blog about it now.   It’s a way to walk down memory lane remembering all that we have been through, the good and the not so good.  It’s a way to reach others going through the same thing.  It’s a way to bring awareness to people who haven’t yet been touched by the many faces of Autism.  However, with the statistics being what they are now, it won’t be long before everyone is touched by someone on the Spectrum.

So happy Autism Awareness Day?  I  think . . .

Literally!

Humor is a subjective thing.  What is funny to me, is mostly likely offensive or dull to someone else.  That is true of family humor as well.  Each household has its own flavor of funny.  I’m sure other people think we’re nuts but that’s okay.  We laugh a lot in our house.

One of the things I have always loved about my kiddo on the spectrum is that he takes just about everything literally.  It can be a bit frustrating sometimes especially when he doesn’t understand sarcasm.  I am the queen of sarcasm!  You can’t imagine the miscommunication between the two of us.  He doesn’t speak sarcasm and sarcasm is my first language.  Mostly though it has injected doses of much-needed humor into our daily lives.

Little Man is 16.  I mention this because even though he is mostly grown now and very high functioning, he still takes most things literally.

Today’s Funny . . .

Little Man had a run in with some high school boys.  (That story will be another blog entry on bullying.  Stay tuned.)  Anyway, my son was going on and on how these boys should be punished for scaring and bullying him.  To which I whole heartedly agree.

Spectrum Papa was having a talk with our son about it and tells Little Man to basically keep his own nose clean and not to worry about what happens to these boys.  In other words, don’t stress about it too much.  Mom & Dad will take care of it.

Without batting an eyelash my son responded, “I cleaned my nose this morning and got all the boogers out.”

Dead serious too I might add.

Dad was too busy laughing to discuss the matter any further.

And Another . . .

A few years ago my son was telling me about something bad that had happened to him at school.  I don’t even remember what the incident was now.

My response to Little Man’s sad story was, “Man buddy that really stinks!”

With a very puzzled look on his face he responded, “Why does it smell bad outside?”

“Um no. It doesn’t son.”

And One More . . .

This one isn’t so much literal as it is funny. Little Man isn’t one for cracking jokes but when he does, we crack up!  As noted above. ^^^ We love funny!

The other day we were milling about the house in the evening trying to decide what to do for dinner and making zero headway on the subject.

I finally had my limit and yelled out to anyone that would listen, “I’M HUNGRY!!!”

My son’s comeback, “My name’s Little Man.  Nice to meet you.”

CLASSIC!!

Oh the humor of life on the spectrum!

What a blessing!

I really should have written more of these things down as he was growing up.  The kid slays me some days!   🙂

The Olympics Called – They Want Your Son!

The Olympics didn’t actually call (not that they could) but it sure feels that way to this Mama.

Yesterday was a good day for our family.  My son, Little Man, is a diver on the high school swimming and diving team.  His season ended last month.  He’s a sophomore and did very well this year.  As a freshman, he lettered.  That means he earned enough points to get the varsity letter that goes on a Varsity Letter Jacket.  He was so proud!!  So were we.  We still are!  This year as a sophomore he had high enough scores to qualify to compete in the state tournament at the end of the season.  It’s a very big deal to qualify for state for these kids.  They work so hard for this!  Little Man made it to state which is held in a town over six hours away from where we live.  Nine of us traveled over six hours to watch Little Man compete.  He did his dives well although he didn’t make the first cut.  He was right on the cusp, but just shy of moving on.  He was disappointed, but we couldn’t have been prouder.

Fast forward to yesterday.  The high school divers also practice with the junior high divers during their season which is going on right now.  It keeps the high school divers sharp, and it helps the junior high divers get better.  Win. Win.

My dear friend called me on the phone last night excited to tell me a story.

Her grandson had run in the door from swimming practice very excited and exclaimed, “Little Man is the best diver in the whole world!”

He went on to ask his grandma if she thought he could dive like that.  He was so passionate about the prospect of being able to do what Little Man could do.

Wow.  As a mom with a child on the spectrum, this is such a moment of pride.  Our son who used to struggle with everything is excelling at something and other people are noticing.  What a blessing!  I called dad at work to retell the story.  Spectrum Papa is one proud dad.

Way to go Little Man!  You amaze us everyday!

PDD-NOS – Say What?

I live in a fairly small city with my husband, Spectrum Papa, and my son, Little Man. He’s no longer a little man though. He’s 16 years old and taller than his Mama now, but he’s always going to be my boy. I have two grown daughters, Older Sister, who is mommy to, Baby Girl, my precocious 5 year-old granddaughter, and last but never least, Middle Sister, and her wife, Super Sis, who is 100% super hero. I have documented proof.

 

Little Man is on the Autism Spectrum, PDDNOS, to be more precise. For the lay reader playing along that means Pervasive Developmental Disorder Not Otherwise Specified. As it was explained to me, he fits a great deal of the criteria for both Asperger’s Syndrome and Autism Spectrum Disorder (ASD). However, he doesn’t meet the full requirements of either but he does have many characteristics of both. He is on the very cusp of both without being fully on either. Confusing much? Yes it is. What this does means is that he is on the Spectrum.

 

As a little guy he had classic spectrum behaviors as indicators.

 

  • He didn’t talk until he was about four.

 

  • He had terrible separation anxiety.

 

  • He had difficulty with eye contact.

 

  • He used to stim mostly by making noises. The kid could mimic just about any noise. It was both amusing and infuriating depending on my mood. He also stimmed a little with his hands but not too much.

 

  • He had to have routine. To change his routine was asking for trouble.

 

  • He had meltdowns. Oh joy until we figured out what that was all about.

 

  • He didn’t interact socially like other children his age. He wanted to interact, but he could never figure out how it worked.

 

  • He would only eat certain foods, bland foods. Thank goodness for multivitamins or the poor kid would have had scurvy. Yea for Flintstones!

 

  • He had difficultly falling asleep.

 

  • He wandered.

 

  • He had obsessions.

 

  • He didn’t connect with us very much early on. That was the saddest part of him being on the spectrum for me. I didn’t know how to reach him.

 

We are well beyond those early years now. So much has changed and yet much of our lives are the same. We understand a lot more. We take a lot more in stride. We’ve had a long time to get comfortable on the spectrum.

 

Oh the difference a few years makes. Our Little Man has transformed so much in 16 years. We are in awe of him. He’s a rock star!

 

Here Goes . . .

I’ve been pondering about starting a blog for a while now to share the ups and downs of everyday life with a kid on the Autism Spectrum. Some days are unbelievably difficult but most days are perfectly normal or as normal as they can be for my family’s particular situation. Your mileage may vary. However there are a few precious moments that stand out from the rest. The moments that surpass my every expectation and along with it bring pride and joy so profound that tears come to my eyes. These are the days that make the struggle worth it. I want to share the good moments and the not so good moments that the non-spectrum world doesn’t understand.

“My kid just had a meltdown in McDonalds. I’m afraid to ever take him out in public again. No really I will cook dinner at home forever!”

or

“Oh my gosh! I dropped him off at school and for the first time he didn’t scream and cry and need to be pried off of me so I could leave.”

or

“No honey he won’t leave the house without the rasta hat on (complete with long braids mon). I’ve tried everything to get him to take it off. He can’t go to preschool with that ratty thing on!!”

or

“We’ve tried to get him to stop making those noises. It’s a stim. He’s nervous and overwhelmed right now. He can’t help it.”

or

“No spanking him won’t make him stop (insert inappropriate behavior of your choice). He’s  not trying piss you off. He really can’t help it.”

These moments . . .

Not every parent experiences these kind of days, but spectrum parents sure do.

Thank goodness other folks share the same absurd reality. I sincerely hope you can find the humor and the light in the midst of the hard stuff some days. It really helps!

So welcome to my family’s little corner of the spectrum. Take a seat on the sofa and put your feet up. Don’t worry about taking your shoes off. I don’t keep that kind of house. I’ll grab the coffee.

Feel free to drop a note and let me know what you think. Tell your friends that is if you have the time for any kind of social life.  Been there . . .