December 26, 2014

How Did You Know He Has Autism?

The most common question people ask me is this: How did you know he has autism?  This is an understandable question.  Most people are pretty unfamiliar with what autism is - thus, my blog.  Brandon doesn’t have any physical characteristics of a disability.  In fact in the begining, some of my friends and did not believe me, and made me feel like they thought I was trying to make something out of nothing.  It’s not obvious that he has autism until you spend some time with him.  Even then, (when he is having a good day) people unfamiliar with developmental stages at his young age don’t realize he is delayed unless they see him alongside another child his age.  Often when we’re out and about, such as the grocery store, someone sees my adorable little boy and tries to say hi to him or ask him a simple question.  I don’t go into Brandon’s whole story to a stranger in passing, so they probably think he’s just shy…or rude!

So how did I know? The truth is, I didn’t know...not at first.

A Regular 15-month Check-up
When I took Brandon to his 15-month check-up, our doctor asked a series of standard questions for that age.  He was saying "mama" and "dada" but, when she asked if he responded when I call his name, my answer was no.  “He doesn’t even look.  In fact, it’s something I wanted to ask you about.  I know he can hear though, because he comes running when he hears his favorite TV show.  Here watch this,” I told her.  “Brandon!” nothing. “Brandon!  Brandon!,” I said louder.  Still nothing.  She told me not to be alarmed, but she wanted to give me an M-CHAT screening to fill out about Brandon.  I had no idea what that was, but I remember my face feeling hot and flushed.  How could I not be alarmed?  I didn’t even have any idea what an M-CHAT was.  All I knew is she needed to test my child for something wrong with him.  She explained that it was an autism screening tool.  These were questions about his development.  I relaxed completely.  My child did not have autism.  (Not that I even actually knew what autism was.)  I was not worried about that.  But I would take the questionnaire anyway.  I started to read the questions.  Some of them, I knew he should be doing by now.  For example: If you point at something across the room, does your child look at it? Or, does your child show you things by bringing them to you or holding them up for you to see - not to get help, but just to share?  He didn’t do any of these kinds of things.  At all.  I still wasn’t worried though.  He was only 15 months old.  Children develop and different rates.  There were so many things he did far ahead of his peers like holding his head up, rolling over, sleeping through the night, walking, etc.  At the time I suppose I didn’t realize these were all gross motor skills.  He still has superior gross motor skills and strength.

My doctor told me that the screening did come back positive, although it was low-risk.  She was adamant that this did not mean he has autism.  She recommended that he have a developmental evaluation.  I called right away to schedule an evaluation at the children’s hospital where we lived at the time.  In the meantime, he had a hearing test which was inconclusive.

The Initial Evaluation
He was 17 months by the time we had the evaluation.  I would come to realize that even though early intervention is key, everything takes forever to get started.  After a series of activities, a team of doctors and therapists told us that autism is not typically diagnosed until a child turns at least two but, “We really do not think he has autism.”  I was so relieved.  They were diagnosing him with a global developmental delay” and said that we should get started with early intervention services right away.  “Well, that makes sense.  Technically, he is delayed developmentally,” I thought, still not alarmed.

Eventually, I Just Knew
By 18 months, Brandon had started early intervention with a developmental therapist.  By the time Brandon started those early intervention services, three months after our initial concern, I knew.  I had done enough research to know that my son had autism.  He hadn’t “caught up.”  Three months is a long time at that age, developmentally.  I had come to realize there were many other parts of his behaviors that lined up with autism.  He still didn’t respond to his name.  He didn’t understand anything I said.  He understood, “No!” but it was really just the tone of voice that he understood.  I could have replaced the word “no” with anything.  He obsessively lined like items up by threes.  He spun in circles over and over.  His eye contact was very minimal, and he seemed to be in his own world.  Most noticebly, he stopped saying "mama" and "dada" and he was not saying any words.  Today, at almost three-and-a-half he only has a couple of words, and has to be prompted to say them most of the time.

Throughout this time we had two more hearing tests, which were again inconclusive.  They were in a tiny room, and they expected him to react to things I knew he would not be interested in.  We needed to rule it out though, so the next step was an ABR.  This is a hearing test where they put him under anesthesia to track his brain waves and see if there is a hearing problem.  We needed to get this done before his next evaluation.  To be honest, I was hoping I was wrong about this too.  I was actually praying that my child had a hearing problem.  What a weird thing to say.  A hearing problem was easier for me to imagine coping with than autism.  The test came back saying he had no hearing problems.  It was the epitome of a bittersweet situation.

Your Child Has Autism
I called and made an appointment for an evaluation for less than two weeks after he turned two.  By that time it was just a matter of getting an official diagnosis.  I didn’t tell the psychologist that I “knew” he had autism.  I didn’t want to put any ideas in her head.  I was still praying that he didn’t.  She went through everything, and it told us it was clear that Brandon has autism.  I said, "Okay.  Where do we go from here?"  When we discussed next steps, she mentioned that I didn’t seem surprised and I was handling it well.  I then told her I was expecting it.  I was hoping it wasn’t the case, but I was prepared for it.

It wasn’t this major shock like many people have when their doctors said, “Your child has autism.”  It was something I gradually came to terms with as I observed my child from a different perspective.   I may have been prepared for the diagnosis, but I had a lot to learn about autism.  I still do, as he goes through different stages.

Brandon was diagnosed early..less than two weeks after he turned two.  This is a pretty early diagnosis.  I am not modest when it comes to admitting that I am proud of this.  I know how easy it can be to get caught in the denial stage.  If I hadn’t had a pediatrician that caught the mere potential for a developmental disorder, there’s no way Brandon would have been diagnosed as early as he was.  He certainly wouldn’t have gotten early intervention services as soon as he did.  I will be forever grateful to that doctor.  She changed everything.

December 19, 2014

Merryish and Brightish

May your days be merry and bright! Well, not every day that we did a Christmas activity was merry and bright.  But it's okay.

This year we bravely made our way out to a Christmas event at our church.  It was pretty fantastic.  There was snow, sledding, food trucks, and kinds of fun activities.  Brandon did not do so well.  We did go down the sledding hill a couple of times, but I quickly was reminded that he really has no idea of the concept of waiting.  Having to wait in line is our doom.  He truly does not understand that I am not preventing him from doing something fun, but that we just have to wait our turn.  He was falling out.  (This is what I call his meltdowns when they're behavioral, not sensory related.  There's an important difference, which I will explain in another post.)  We didn’t stay long.  “Leaving already?” an unknowing volunteer asked, innocently.  “Yeah,” I replied with a fake smile and a pang in my heart as I looked over my shoulder at all the family fun happening behind me.

On another night went to Brandon’s family night at school.  Again, we didn’t stay long.

Going to see Santa was perfectly fine, though.  His dad took him and was cleverly armed with mini marshmallows for Santa to give him.  He sat on Santa’s lap and waited to take a picture.  I just never quite know how he is going to react in a given situation.  It doesn’t stop us from trying.  It’s just disappointing when things don’t go the way I hope.  Part of this is behavioral.  Like many young children, he wants to do what he wants to do.  When he doesn’t get his way, he lets you know he is pissed.

Just like any other parent, making these holiday memories is important to me.  I want to look back on the holidays with Brandon and remember fun moments.  I don’t want to remember the time he was kicking and screaming and I had to carry him out of an event like a sack of potatoes.

The key to this is making happy memories in our own way.  Brandon flips out when he can’t play with the ornaments on the tree.  So, he has his own tree about his height with unbreakable ornaments that he can do whatever he wants with.  My memory will be of him enjoying his tree.  He may not care to help me put ornaments on our tree, but he likes to spin the ornaments on his own little tree.  So, I will join him and spin away.  That will be my memory.  He won’t rip open all of his presents on Christmas morning with a big grin on his face like all the other kids.  I will have him open one present every hour or so to keep him from getting overstimulated.  Instead of memory where he had a meltdown from being overstimulated by all the presents, wrapping paper, and people, I can look back at the memory of him opening that one present that he really loved and played with all morning.

Most the time I have to learn these adjustments the hard way.  Even though we don't do many things the way I dreamed of, they are worth doing just a little bit differently in order to make memories we can cherish.

December 13, 2014

On the phone at the park...yeah right


I’ve seen a lot of chatter recently about cell phones, and the call to action for parents to get off their phones, as quality time with their kids is a blur around them.  It’s funny, there are so many things that being a special needs parent changes.  When asked to think of something of the top of my head, I always pause.  Maybe it’s just because there are so many, it’s hard to know where to start.  How about this.  Just name something you do with your kid, and I’ll tell you how it’s different for me…how it requires accommodations, extra planning, or all-together avoidance.  That’s an easier way to explain it.

So, this cell phone thing…I’ve seen three articles recently centered around being on your phone while you are with your kids at the park.  And here’s how this little blogosphere controversy is different for me…it’s just not an issue.  I don’t have the luxury of even considering if I want to get on my phone.  (Blessing in disguise?)  If I get on my phone for even ten seconds, my son could be halfway across the parking lot or climbing a tree.  Calling out “stop” or “come back” will likely do nothing.  He is fast and he cannot tell someone if he has lost me.  I have to be two steps behind him.  He is fast.  I know I have said that twice now.  He is.  He is fast and he is strong.  I have to watch him like a hawk.  Literally.  I do not take my eyeball off of him for even one second.  If I get my phone out to take a picture of him, I hold his hand while I get the camera ready.

I’m not saying I’m Miss Perfect Mom who is never on her cell phone when she could be playing with her kid.  When we are in the safety and comfort of our own home, I certainly have more flexibility.  Full disclosure, I am guilty too!  This is just one of many things that carry a different meaning for a special needs mom.

December 5, 2014

As Long as it's Healthy. Dear Mommy-to-be...

Dear Mommy-to-be,

Someone asks you, “What do you want?  A girl or a boy?”  You reply, “I don’t care, as long as it’s healthy.”

Let me ask you this: If it’s not healthy, then what?  What about all the moms and dads who have babies who were not born healthy?  Are their babies less?  Unworthy?  Too much trouble?  A shame?  A tragedy?

I know you, so I know this is not what you mean.  What you mean to say is, “I don’t care, but I do hope and pray I have a healthy baby.”  Because if that turns out not to be the case, you will not love that baby less.  Cut out the “as long as.”  It changes the meaning of what you intend to say.  Unconditional love holds no ultimatum, and there should be no ultimatum with motherhood.

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