Month: February 2018

My blog has been up and running for about a month and half now.  For the last month and a half, I have had so many people approach me and say they enjoy reading it.

Thank you all for that. 

I appreciate the support from family, friends, and even strangers.  I am happy to know that you enjoy my writing, and I am even happier to know that my writing has made you think.

I have also heard, “You’re awesome.  You’re doing great. You handle this so well.”

While I appreciate the sentiment, I have to tell you that you’re wrong.

I am just a regular mom.  I am no stronger and no better than any other mom out there. I am not supermom.  Most days I don’t feel like I am doing great, nor do I feel like I handle it well.

I say this because I want to encourage other special needs moms.  If you are just starting down this road, please don’t think it takes a super hero with super powers to do this job.  Because here I am, living this autism life, and I am yet to find my super power!

You have a child with special needs.  Those special needs often require “extra.”  Extra time.  Extra effort.  Extra help. Extra work.  Extra services.  Extra attention. Extra compassion.  Extra preparation.  Extra money.  Extra coffee.  (You knew I had to throw that in there.  Come on, Starbucks or Folgers, I’m waiting on my sponsorship, here!)

So you do it.  You do it all.  You do it because this is your baby.  You, as their mom, will do anything in your power to help them.  You do it, even when you don’t feel like doing it.  You do it even though you are exhausted.  You do it, even if you aren’t sure what you are doing!

In essence, you fake it ’til you make it.  You don’t get a “special needs” handbook when your child is born.  No one is telling you exactly what to do or when to do it.  I think this life is always a work in progress. 

Some days you will feel defeated, lost, and alone.  Your thoughts will be wrought with worry.  There will be tears, heart ache, grief, and jealousy.   You are human and cannot help having these emotions.

It’s what you do with these emotions that will matter.  If you get stuck in the sorrows, you will never experience the true joys.

Yes, this life is hard, I’m not going to lie to you.  But there is also nothing like it when your child reaches a new milestone.  The pride you feel in those moments is most certainly on par with the pride parents feel when their child wins an Olympic gold medal. 

No, you didn’t know this would be your life.  You probably thought, “I could never do that.”  You didn’t feel prepared or ready.  You might have thought it would be impossible.  I read this Nelson Mandela quote today and loved it:

“It always seems impossible until it’s done.”

We can do this.  We didn’t know that we had it in us, but it is there.  I promise.

We had a rough weekend.

We planned a play date at a friend’s house.  Then I realized that we also had a birthday party for another friend.  Although they were at different times on Saturday, in our world that is considered “double booking.”  Too many outings in one day often leads to a bad day around here.

Transitioning from our play date was rough.  I ended up having to carry Colin out to the car, sans pants.  A lot was going on as we tried to leave – potty breaks, not wanting to leave, being tired – and it all added up to a rough transition.  Within ten minutes of driving, both boys were asleep.  They got in an hour nap as we made our way to the birthday party.

Colin needed to go outside a couple of times when the party was a little too much for him.  This is a really good skill for him.  Two years ago, he would not have removed himself from the situation.  Everything would have escalated and BOOM, meltdown.  Now he usually knows when he needs a break and lets us know.

Fast forward to this morning.  He randomly screamed all morning.  We don’t really know why.  I knew that church would be rough, and we probably should have stayed home.

Church is hard for him. It is stressful for me.  I am torn between “he screams and I need to get him out of here fast” and “if he screams and I take him away, he thinks that screaming gets him what he wants.”  I ended up taking him downstairs, where we sat by ourselves.  I tried to take him to music time.  After one minute, he grabbed his teacher’s hand and walked her outside.  (If Mommy won’t take me out, you will, Miss Karen!).  Miss Karen went back to teach, so Colin and I sat alone, again.  I tried to coax him back into the preschool class, but he was adamant that he would make his way back into the choir loft.  He screamed when I had to carry him back downstairs again.  Curtis had heard the “Colin Call” and came down to meet us.  We ended up in the nursery where he could just play for the remainder of the service.

This is where autism is hard, guys.  Fun things – like play dates, birthday parties, and church – they turn into hard work.  I have to plan for everything and be prepared for anything.  Both days this weekend I ended up carrying out an angry, crying, screaming, meltdown-mode little boy.  As he gets bigger, it gets more difficult.  That’s the physical part.

The emotional part is worse.  Remember how I said it is a good thing that Colin knows when he needs a break and removes himself from the situation?  While that is good for him, it breaks my heart.  I wish he didn’t need to take a break from these fun things.  A birthday party with friends, games, pizza, and cake – how fun!  Unless you have sensory and social problems, that is.  He can’t tell me, but I imagine situations like this can be very overwhelming for him.  I want him to want to play with the other kids.  I wish he would have been right up there with his brother, laughing, playing, and having a good time. He did sit and watch the other kids play for a bit, and I was happy to see that he was interested in what they were doing.

It is also sad for me because Finley so much enjoys the social things in life.  He had a blast yesterday.  But when Curtis had to take Colin out, he missed watching Finn hit the pinata.

 I feel like we rarely ever get to experience anything as a family.  

We are always separating:  one of us with Finn, one with Colin.  I want to be present for both boys, but that is impossible when they aren’t even in the same room.  We try to take turns as to who is on Colin Duty/Finley Duty, but it’s hard.

I always feel isolated at church.  Colin and  I spend most of the service wandering around the old part of the church, alone.  I know that he needs to get away, move, whatever the case may be, but part of me is sad because we aren’t with everyone else.  We used to be so active in church, and I feel a definite sadness because we cannot be active now.  Then I feel like I’m neglecting Finn.  Like, “Sorry, Kiddo, you have to stay with your class, peace out.”

On days like today, I think it would just be easier to stay home.  Well, I don’t think.  I know it would be easier to stay home….but we go anyway.  I want Colin in the habit of going to church.  If we never go, he will never get used to it.  We can’t spend our lives cooped up in our house.  We have to go out, and Colin has to learn to go too.

I look at the picture above of Colin watching the fire truck from the doorway.  I see that as a metaphor for our lives right now.  We are always on the outskirts of things.  Watching life happen around us  and we are stuck on the outside. Watching and waiting while everyone else lives a “normal” life.

I sometimes ask myself why we go out, why do we do things?  We know it might end up a disaster, or we will see the ramifications of those outings later.  So why?  Well, I guess we do it because they might end up going really well.  We go out and we try because we want to do things as a family.  Like Temple Grandin says, autistic kids need to experience things like any other kid.

On a possibly-related note, my stomach is torn up all day long, every day. I had been attributing it to my age and just not being able to eat whatever I want anymore.  I mentioned it to someone at church this morning, and he said “maybe you have an ulcer.”  The more I thought about it, he very well could be right.  I worry about everything, all the time.  Who knows what it’s doing to me physically?  I guess I should look on the bright side:  if the thought of food gives me heartburn, I’ll lose weight!  I’ll keep you updated on my recently-discovered diet plan.

I am sorry for the sad/complainy post.  Things have been going really well lately, so this rough weekend hit hard.  I guess I just needed a little reminder that autism can be tough.  Ha.

Remember how I’m a worrier and a planner?

I have been worrying about Colin and school since he was two years old.  Even then, I knew that he would struggle in a regular classroom setting.  After two years of worrying, he recently started ABA therapy.  He has been on the waiting list for months, and he just got started last week.  Finding this ABA center has been an answer to my prayers.

If you are interested in learning about ABA, Autism Speaks gives a good summary of the therapy, so I will direct you to their site.  Basically, behavior analysis is the science behind learning.  ABA therapy uses these principles to teach (or stop) behaviors.  It is a researched-backed therapy approach for those on the spectrum.  You might not know this, but it is successfully used for anyone, not just kids on the spectrum.  You just usually hear it being used with kids on the spectrum.

Some families don’t choose to do ABA, and I understand.  It can be daunting, and you have to do what is best for your family.  For us, we feel like Colin needs the structure, repetition, individualization, and consistency.  He also needs that one-to-one ratio right now.

You may have heard some controversial things said about ABA therapy:

ABA turns kids into little robots.

ABA kids are so therapatized and rote.  

ABA is mean and cruel.  

After hearing those things, you might be wondering, “Why would you put your kid in a therapy if it’s like that?”

So, why ABA?

First of all, we did our research.  We found an amazing ABA center.  I’m sure there are “bad ABA places,” so you have to find a good one.  I have watched videos of kids who went through this program.  They made amazing progress in just a few years.  Watching those videos gives me such hope (and makes me cry).  During his initial evaluation, I realized, “Wow, these people just get him.”  They had literally all of his favorite things ready for him:  straws, light up toys, spinny toys, balls, squishy things – all of the things.  They  also have an amazing sensory room.  We left saying, “They are already Colin Experts!”

ABA is science, really.  Research shows that ABA works….and who am I to argue with science?

Kids like Colin, they learn differently.  He also needs to be taught so many foundational learning skills, and ABA will provide that instruction.

To address the “mean and cruel” thoughts…..here’s the thing.   His BCBA’s want to help.  They are not “trying to be mean.”  They are trying to teach him.   They are trying to help him.  Does that sometimes mean that they will withhold something he really wants?  Yes.  Does that mean that he doesn’t always get his way?  Yes.  I would venture to say that this happens to every single one of us at some point in our lives.

Therapy can be hard for him.  He gets mad.  He cries.  It is work, and it is exhausting work.  It is also hard for Mommy to see him get upset in therapy…..

but you know what?  I watch my baby struggle every.single.day.  Every day tasks that are easy for other kids, they are hard for him.  He will be four years old in a month, and communication is still such a huge hurdle for him.  Following directions, sitting and waiting, reading social cues, following socially accepted protocols, being in large crowds, these are all difficult for him.

So if this therapy will help him learn new things, then we do it.  Will there be tears?  Yes.  Will it be hard and exhausting?  Yes.  Will he get mad and frustrated?  Certainly…but we will do it anyway.

Why, you ask?

Because I will do whatever it takes to help my son.  If he needs 40 hours of intense, direct, one-on-one (expensive) therapy every week, then that is what we do.  He is smart.  He can learn, but his learning style is different.  He needs things broken down into tiny steps.  He needs consistency.  He also needs lots of understanding.

I don’t know how long he will need ABA therapy.  Months?  Years?  That is one of those things that I can’t think about for too long, or I end up feeling stressed and worried.  For now, he’s getting ABA.

I am not trying to “fix him” or “cure him.”  As I’ve written before, he isn’t broken.  I don’t see ABA as a “cure all,” but I do hope that it helps him make progress.  I just want to help him.  I want to give him every opportunity to have his best life.  I want to help him learn new things.  I want to make his life easier in any way that I can.  I want him to realize all of his potential.  I don’t want to hold him back because we didn’t teach in a way that he could learn.  I am excited to see where ABA takes him!

I hope to look back at this post in a few years and say:

Wow.  Those were hard days.  It took a lot of time and effort (and prayers, and money, and tears, and driving, and coffee…), but it was all worth it.  Look how far he has come!  I know that we have done everything we can to help him.  Colin has been worth it.  

In honor Valentine’s Day (even though I completely acknowledge that Valentine’s Day is a made-up holiday), I wanted to do a💗 LOVE💗 post.

Random things I love:

• a good cup of coffee.  In all honestly, it doesn’t even have to be good.  I just love coffee.
• a kid-free Target trip.  Preferably with gift cards in hand!
• a clean, organized, nice-smelling house.  Nothing feels better than a clean house!
• binge-watching Netflix shows like Once Upon a Time and Parks and Rec.  Leslie Knope is my spirit animal.
• office supplies.  Pens, markers, and binders, oh my!
• a planner.  I’m not a “I’ll put it in my phone” kind of gal.  Paper planner: all day, er-y day.
• color-coding.  You better believe that my planner is color coded.  
• a good book.  (but it has to be a good-good book, or I won’t finish it!)
• a nice fall or spring day where we can be outside and not be cold.  or sweat.  I hate sweating.
• hand lettering.  Chalkboards, cards, whatever.  It’s relaxing.
• I loved to color before it was cool.  Ask my mom.  I wanted coloring books for Christmas 15 years ago. 
• food.  Any kind.  Just food.  I’ll take all of it. 

Do you know anyone who makes custom doormats?  We don’t have a doormat for several reasons. One, we would just get it dirty.  Why buy something that I know we will ruin?  Two, it’s windy here, and it might blow away.  Three, I think we would need a very specific doormat to properly prepare people to enter our home. It would need to read something like this:

When it comes to parenting, we all pick our battles.  We weigh our options and decide – is it worth?  Do I really want (or need) to fight this fight?

Now, I cut Colin’s hair when he takes a nap.  He rarely naps these days, so hair cuts are few and far between.  He gets a little shaggy from time to time, but that’s okay.  Mommy is no beautician, so they might not be the best haircuts either, but you know what?  It’s just hair.  

Curtis and I have attended some parent training courses offered by Colin’s (soon-to-be) ABA school.  One class was called “Haircuts, Dentists, and Doctors, Oh My.”  They gave us a 23-step process on how to help Colin get through a haircut.  In short, it involves breaking it down into tiny steps in order to desensitize him to it.  We bought the quietest electric clippers we could find.  The ABA school had recommended these: (picture is a clickable link)

If you know someone who struggles with haircuts, I highly recommend these products!  If I can make my son’s life easier, I will do whatever it takes!  Even if that means tricking him into a nap and crawling around like a ninja to trim his hair!

We will work on the desensitization for haircuts…someday.  For now, that’s just not a battle I am ready to fight.  Like I said earlier, it’s just hair.  

                        Colin at one year old and almost 4

Most babies say their first word around 12 months of age.  As I said in my last post, I worried about Finn talking.  When Colin was one, and Finn was two, neither of them had any words.  When Colin was 14 months old, he said, “bye.”  I remember my Pawpaw saying, “he’s going to talk before Finn does.”  I remember having anxiety about that.  What if Colin talked before Finn?  What would that do to Finn’s self esteem?

As any good SLP, I badgered Colin constantly to hear that sweet, sweet first word.  When people would leave our house, I could prompt him to wave and say “bye.”  He did pretty well for about a week.  Then he just lost interest and stopped saying it.  I really don’t think it was a matter of “he’s autistic and lost some language.”  He just kind of stopped, like he hadn’t quite mastered it to begin with.

As I’ve said, he does have some pop-out words, but nothing that he uses consistently.  If it isn’t used consistently with meaning, it doesn’t count.  (Sorry, kid, your mom is an SLP.  I’m a tough critic!).

Fast forward to today.  He is just over a month away from his fourth birthday.  I pick him up from his part-day of daycare.  One of his teachers says, “Are you leaving, Colin?”  I say, “Yeah, you better tell Katie bye.”  He usually just smiles and waves.

Today, he looks at Katie. Smiles. Waves….and says, “bye.”

*Insert all the excitement and all the heart eyes and all the thankfulness in the world*

He said it again to two more people before we left school.  I called my husband, parents, and grandparents on the way home to share Colin’s most wonderful news today!

We have a pretty set bed time routine.  Daddy brushes Colin’s teeth. Then Colin waves night-night to Daddy, because, well, let’s be honest: everyone wants Daddy to leave so Mommy can put them to bed.

Then this happened: