user's Blog!

Dear Walt Disney World,

Thank you. 

Our family just completed our second annual Disney vacation.  As expected, our trip was fun, exciting, sentimental, magical (and exhausting).

I have two sons, a four year old and a three year old.  My three year old is on the autism spectrum.  His diagnosis can make vacations (and ordinary day-to-day outtings) difficult, but you helped make our trip amazing.  Please accept my thanks and virtual high five!

Thank you for understanding that kids like my son cannot handle waiting in extremely long lines.  Thank you for providing a disability pass for our family so we could still enjoy rides without a meltdown. 

Thank you for providing food options for those with dietary restrictions.  You go out of your way to make sure everyone can safely enjoy every meal while on property.

Thank you for providing companion bathrooms.  I am sure that families who have bigger children and adults who need assistance are grateful for companion bathrooms.

Thank you for rides where he can sit on my lap.  He feels more secure sitting on someone’s lap rather than a seat, and no one ever questioned him lap-sitting.

Thank you for understanding cast members who are ever so accomodating.

Thank you for characters who always took the time to interact with Colin.  Every single princess made sure to talk to him, even if he didn’t make eye contact.  They never questioned why he didn’t answer their questions.  When he screamed, not a single character even flinched.  Thank you for showing him the same love and acceptance that you showed to my older son. 

 

Oh, I almost forgot! Thank you for exhausting him to the point that he slept 8 hours straight last night.  (All my autism parents out there, can I get an AMEN?!) 

Thanks for the memories, Disney!

Until next year,

Deidra

When we first moved into our home, we decided that we wanted a play space for the boys in the basement.  Curtis worked on this room all summer and fall our first year here.  This was their Christmas present our first holiday season in our new home.  At the time, I just knew that I wanted a space for them to play during the cold winter months when we couldn’t play outside.  It turned out to be a great asset as we unraveled Colin’s sensory needs.

Colin has always been a mover and shaker, so I looked for ways to give him the movement opportunities that he needed.  Once, I found this amazing website that would build a sensory room for you!!  Say, what?!  A whole room?! Yes, please! Sign me up….until I saw the price.  I think they ranged from $8,000-$12,000 if my memory serves me correctly.

Friends, you can put together your own sensory room for much, much, much less.  Here are some things that worked for our family.  (All of the pictures are clickable links for you!)

Colin was always a low tone kid, but that has greatly improved with the use of his trampoline.  If you would have told me five years ago that I would have a trampoline inside my house, I would have told you that you were nuts!  Seriously, he jumps every single day, and I don’t know where we would be or what we would do without the trampoline.  Here is a link to one if you are interested:

 

The trampoline has also been great for Finley too.  You know, because all four year olds need to practice their ninja moves.

This coaster is just fun!  They have since outgrown it, and now our nephew is enjoying it.

We also love these peanut balls:  (they are really sturdy and even hold me!)

The swing has been good for his vestibular system.  Colin used to be terrified of swinging, so we ended up getting this circular swing and kept it low to the ground.  Now he loves to swing fairly high and loves to spin in it.  (Mommy, on the other hand, gets nauseated just looking at them spin in it…blah.)  I believe we got ours at Home Depot, but this one is similar:

 

Do you know that a sizable portion of my fears and worries about Colin’s diagnosis are actual for his brother?  I’d say at least 25%.  No, maybe 30-35%.  I worry about Finn almost as much as I worry about Colin.

How will Finn handle his brother’s diagnosis as he gets older?  Will other kids pick on him because his brother has special needs?

My heart breaks a little each time Finn wants Colin to play with him.  I rejoice in the moments when he does play with him.  Finn makes comments every now and then about Colin not talking yet.  He used to say, “Colin is still a baby so he can’t talk.”  I always explain that he is a big boy, but talking is hard for him.  The other day he said, “Why did Colin grow up to be a big boy but can’t talk?”  Holding back tears, I explained autism to him.  I said that Colin’s brain just works a little differently, and talking is hard for him, but he is learning.  Finn was satisfied with that answer for now.

Finley is such a sweet, caring, compassionate boy.  I think that having a brother with special needs will only encourage him to build upon those characteristics.  I often tell Finn that God chose him to be Colin’s big brother because he is the best big brother in the whole world.  God knew that Colin was going to need the best brother to look out for him and to love him.

I took this picture on Thanksgiving.  You see Finn’s arm around Colin.  This is the only way we could get Colin to stand still for two seconds because he so desperately wanted my cell phone.  Finn is a trooper, even though, during picture taking, he said, “this is the worst day of my life.”

I look at this picture and see their personalities so clearly.  Colin is wildly happy and energetic with a contagious smile.  Finn has his little grin and gleaming old-soul eyes.  He has arm protectively around his baby brother.  He will always be there for him and have his back.  I pray that they have a close relationship as they grow.  I pray that Colin looks up to Finn, and that Finn will love him and look out for him as only a big brother can.

“Today was just a simple, quick and easy WalMart trip,” said no autism mom ever.

Except, I DID say it today!  Store trips are something that we have had to work on.  Colin gets overwhelmed easily, and his flight response kicks in, and he is outta there.  He also screams.  It’s high pitch, it hurts your ears.  I have, many times, ended up wrangling him by the time we get to checkput and people look at me like I’m a crazy lady.  I am sure I look like a crazy lady, too, because I undoubtedly have broken a sweat and am red-faced.  If Curtis and I are there together, one of us sometimes just takes him out to the car so he doesn’t have to wait in the checkout line.

Today, he and I go in, and he willingly got into the buggy.  He sat down and just looked around.  I’m not even lying, I just pushed him around for a bit just to see if he could do it.  And he did! *insert proud mom smile*

We had to wait at the pharmacy for some medicine, so he wanted my phone then, but whatevs.  He hasn’t even acted like he wanted it before then. So hashtag win.

I gave it to him for the rest of the trip.  We literally only got 2 things today, so it was a short-lived stent in the Walmarts.  Some people might not agree with that, but we are babystepping, people.  Im sure the rest of the WalMart shoppers were unknowingly happy for my decision too.

I know that our next shopping trip could be a disaster, but not today.  Today, he was happy to be there.  I didn’t break a sweat.  Nobody stared at us or judged.  Again, thats a #win!

Recently, I have had this crazy need to clean and organize.  I would say that it’s a compulsion.  I would equate it to nesting, where you feel like you can’t function until things are in their places. 

I’ve always enjoyed a clean house.  I completed most of the Konmari tidying up steps several years ago (and yes, it really is the best way to organize. And yes, it actually lasts!).  Any time the boys are gone or otherwise occupied, I don’t Netflix and chill, I clean.

I’d say I’ve been OCD-level for the last month or so.  On the plus side, I’ve gotten alot of organizing done…on the downside, I know I’m missing out time with the boys because of it.  I always think, “oh, just this one more thing and I’ll be able to focus on (insert whatever task).”  But really, it’s never done.

I had no idea why I had this sudden urge…until today. 

You see, I’ve always had a need to control things.  Time and time again, God shows me that I’m not in control:

-Infertility
-pregnancy loss
-Surprise pregnancy with Colin
-Colin’s autism diagnosis

All of these things, completely out of my control.  God used all of these things to teach me lessons.  1) I’m not in control, He is. 2) His plans are bigger than anything I could ever imagine.

I came through all of these things a better person, more understanding. Closer to God. Stronger. 

Colin’s diagnosis, although I’ve honestly known it since he was one year old, has only been official for a couple of months.  I didn’t know that I would, but I guess I’ve had a mourning period. 

 I had this epiphany last night: I think that my obsessive need to clean and organize comes from needing control.  I think that organizing my house is a way to control something when our future is so out of my control.

So as we start a new year, I guess I’m learning  (again) that I cannot control everything.  I need to let go and just live the life God had planned for us long before we were even born.

There are a lot of people around me having babies.  That always leads to conversations like, “when I was pregnant…” from everyone who has ever carried a baby.  I have heard a few people say, “I was so scared that I would have an ugly baby.  My worst fear was having an ugly baby.”

REALLY?!  Of all of the horrible things that can happen, your greatest fear was an ugly baby?  What about fetal death?  Horrible birth defects that lead to physical and cognitive impairments and various health implications?  Heart defects?  Chromosomal abnormalities?  Some random unknown-unheard-of-affliction that might be special to your child and no doctor has ever seen or heard of it?  I feared everything while I was pregnant with my babies, and I hardly gave a second thought to what they would look like.  My first pregnancy ended in emergency surgery at seven weeks (it was ectopic), so that set me up for worry for any and all pregnancies that followed.

Do you know what my “greatest fear” was?  Autism.  Because I worked with kids who were on the spectrum, I knew (correction, I thought I knew!) what it was like.  The parents always seemed so sad.  It was an effort to get their kids to therapy.  It was an effort to get them to interact.  Small everyday things seemed such a challenge.  Everything just seemed to require so much effort.  Hard.  Sad.

I guess you could say that I’m here, just living my nightmare, my worst fear…but you know what?  Our lives are not a nightmare.  If I had to choose three words to describe my life, they would be:  blessed, full, contented.  Of course I have sad days, but the good days far outweigh the bad.

Are things harder sometimes?  Yes.  Are there things I wish Colin could do that he still can’t do?  Absolutely.  Do I wish things were easier for him?  Do I want a “normal” life for him?  Do I worry about him and his future?  yes, yes, and yes.

I guess I’m writing this post to say this:  you never really know what you can do until you’re given the opportunity.  I went to graduate school with a girl who really enjoyed working with kids on the spectrum.  She said once, “I guess if anyone were going to have an autistic child, it should be me because I would know what to do with them.”  I panicked inside when she said that and thought, “ah, not me!”  And yet, God gave me a son with autism.

He gave him to me.  He allowed me the opportunity to be his Mommy.  As I type this, I see the verbage I chose:  gave, allowed, opportunity.  You see, my son is a gift.  He is exactly as God intended him to be, and I get to be his Mommy.   Ten years ago, I would not have chosen those words to describe having a child with autism.  But, here is the thing I missed all those years ago when I was terrified of having a child with autism:  he is my baby.  First and foremost, he is Colin.  He is my sweet, cuddly, energetic, curious, silly, beautiful boy.  He just happens to have autism.  It is just a part of him, it does not define who he is or who he will become.

I whole heartedly believe that God puts people in our lives because we need each other.  I have been extremely blessed to have some amazing people in my life.  My family is very close, and I know that they love my children *almost* as much as I do!

I met most of my tribe through college and work.  My college friends are still around, seven years after we graduated.  We can go months and months without seeing each other, and pick up where we left off. 

My best friend is an OT who I worked with at my first job.  She’s my constant. We text everyday.  From seeking advice on parenting to texting each other pop culture memes and t-rex costume videos, I can always count on her to be there for me.

Because I’m a therapist, I have so many other therapists whom I call friend.  I have friends and colleagues whose opinions I trust and value.  They are invaluable to me.

As an early intervention therapist, I have been invited into others’ homes.  I had one family in particular that I really connected with. We are now friends, and our children are friends.  She is a mother I look up to.

Early intervention led me to a particular daycare.  After meeting the staff, I decided to take my own boys there.  They are absolutely amazing with Colin, and I couldn’t be more grateful for them.

I’m sure you have your own village.  Use them!  Ask for help.  Take them up on offers to help you.  Ask for advice.  Complain to them. Celebrate victories with them.  Don’t keep things to yourself.  I really think it helps to have someone to talk to.  You go find yourself a cheerleader.  Find encouragers.  Find good listeners. Find those whose opinions and knowledge you value.  Find someone who gets you, who understands your life right now.  Maybe that’s another special needs mom. 

One thing that I have found, no matter what season of life that I’m in, is that I, too, can be that person to someone else.  So your experiences and thoughts are going to help someone else, if you just put yourself out there.  You just may be that special someone to another mom out there, and you don’t even know it yet!

I often think that God gave me Colin because I am a therapist, and I would be able to see his needs and know how to help him.  Really though, I think He sent me down the path of speech pathology because he knew Colin and I would need the village I would meet along the way.  He knew what and who we needed long before I ever had a clue!

Last night was Halloween, so we did the obligatory trick or treating.  We weren’t going to go, but Finn’s preschool class had talked about it, so he wanted to “go to Halloween.”  Thanks, Mrs. Jessica.  Thanks for that.  (but really, thanks!  He even told me, “I knew the police officer and the fireman, but I didn’t know the other peoples’ names, so you need to check my candy to make sure it’s safe.”)  I wasn’t sure how Colin would do, so those situations have stressed me out in the past.  Recently, I’ve been more relaxed about events like this.  If he does okay, GREAT!  If he doesn’t, then we will just cut his evening short and head home.

Of course Finley walked up to everyone and said, “trick or treat!”  Colin is nonverbal, so he didn’t say anything.  I helped him lift up his bag for people to put candy in it.  The first man put candy in his bag, and Colin leaned in and looked, like, “what is this?!”  By the third person, he was jumping up and down with excitement when the candy was dropped in his bag.  And of course he had to take a peek each time.  I was so proud of him!

My philosophy has changed over the years.  When the boys were tiny (and only a year and six days apart), I didn’t want to do things if it was going to be hard, too much work, or potentially stressful (for him and myself).  Now, I realize that we need to do these things.  If he never gets to go trick or treating, how will he learn?  If we had not gone last night, the boys would have missed out on that whole Halloween tradition.  Not only that, but I would have missed out on seeing the joy on their faces as they received and ate alllllll that candy (that we checked for safety first!  Thanks again, Mrs. Jessica).

Trying to come up with a “first” blog post is always hard.  Like, do I go deep and philosophical?  Or do I keep it light and fun?  Decisions, decisions.  I assume if you’re here, you might have a child on the spectrum too.  Or maybe you’re just curious about what I have to say.  Regardless, maybe this writing will be super relatable to you, or maybe you’ll get a  new perspective.