September 2, 2017

Autism Acceptance T-Shirt to Support Organizations who Support Special Needs Children (Ends Sept. 15th, 2017!!!)

Show your support and acceptance for those with autism! 

Brandon has had the privilege of attending two wonderful schools who wholeheartedly support special needs children: Scales Elementary School and The Ann Campbell Early Learning Center. We have made lifelong friends at both schools, and Brandon has made tremendous gains due to having access to fantastic programs.

The proceeds from this shirt sale will to go Scales Elementary School. A portion will also go to the Ann Campbell Early Learning Center, formerly Project Help, an inclusive preschool where children who are typically developing and children with developmental delays or disabilities play together and learn from each other. 

By buying a shirt, you will support two wonderful schools. Both schools have served Brandon and may other special needs children with love and support.








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July 22, 2017

High Highs and Low Lows

Two days in a row I wrote a Facebook post about my son, Brandon.  The contrast between the two was very eye opening for my friends and for myself.  The love came pouring in from my friends via texts and social media.

My first post said this:
For the VERY first time, Brandon asked ME to snuggle with HIM!!!! He took me by the hand, brought me in my room, and put my hand on the blanket I use to lay on the couch with. I picked it up and he took me to the couch. I sat next to him, then he pushed my arm toward his iPad and we cozied in together! We will always work on his speech, but I don't need words to know he loves me!!!

The very next day the envy and loss hit me.  
I'm outside jumping on the trampoline with Brandon and I just looked over at the neighbors' backyard and the dad is weed eating his yard, and his young son is right behind him with his toy weed eater following his every footstep. I just made me feel sad for James because he bought Brandon a toy lawnmower a long time ago hoping for the same kind of scenario that never happened. James has so many happy moments as father and son with Brandon that he wouldn't trade for the world, but in being honest about this whole autism situation, moments like this are a little bit heartbreaking.  A lot of our dreams are lost. We have a lot of new awesome dreams, and I can't imagine having any other child in this beautiful one in front of me, but sometimes these "comparing" moments can be sad.

I went on to say, 
It also kind of makes my post previous to this both happy and sad. Happy because look how much joy I had last night, but sad because it was something so small to everyone else that I was jumping for joy about. Sometimes it just doesn't seem fair. And I know...I know that I'm the grand scheme of things my son is alive. He is happy and he is healthy and things could be so much worse. I'm just in this funk right now and my mind is traveling to dark places like what will happen when James and I are gone and waiting for this miracle where he talks and can live independently one day. I have to end this rant with saying that Brandon is the best thing that has ever happened to me! Words can never describe how much I love him and my family!

I have these feelings of sadness and frustration, then I feel bad for feeling that way.   I am the luckiest mom in the world to have Brandon as my son. (There I go again!)  I think about him being older, thriving, and looking at my blog or Facebook posts feeling like a burden.  He is not a burden.  I know that sharing my difficult experiences are often more helpful to other special needs moms even more than the happy ones.  I can't stop helping others with my honesty, and it is therapeutic for myself to share.  
Autism sure is full of high highs and low lows.  The lows shatter my heart, but the highs...wow.  The small things that we all take for granted in life can make my shattered heart feel like it will burst with love and excitement.  I will not be embarrassed for being so excited about them!


June 20, 2017

Autism on an Airplane

We are now home from our week long Florida vacation!  Travel is stressful.  Add autism to the mix, and it just amplifies it.  I was very pleased with how Brandon did in the airport leaving home.  We waited for the shuttle to take us from the parking lot to the terminal, and Brandon absolutely refused to get on the shuttle.  I was not anticipating this reaction from him, as he had ridden buses and shuttles before.  Whenever he refuses to budge we always say he "put on the brakes."  Well, he put on the brakes over getting on this bus!  I gestured and calmly told him, "We ARE getting on this bus."  I tired to walk him up to no avail, while my husband is busy loading four giant suitcases.  I finally had to hoist him under my arm like a sack of potatoes and carry him on.  Once we got moving he settled right down.  The bus driver was watching all of this unfold in the rearview mirror, and I could only imagine what he was thinking!  He asked if our little one was okay, and I explained that Brandon has autism and didn't want to get on the bus - he didn't understand what was happening, but once it clicked he was fine.  It turns out this man used to drive a special needs bus and was very familiar with these kinds of reactions.

Side note:  It's interesting to me how awareness has evolved even in just three years.  Nearly every time I talk about autism, whoever I am talking to either has a family member, or know someone with autism.  People just seem to get it (for the most part).

So, we flew Southwest and got "pre boarding" printed on Brandon's ticket.  This allowed us to pre-board so that we would either get the very front row, or get a seat where James could sit in front of Brandon so that if someone was being kicked the whole time, at least it was one of us!  They cannot require to us to show proof of disability, although, I always bring it with me to things like this just in case.  I just don't want to mess with any delay at all.  We take is high back booster with a five point harness on the plane.  He put on the brakes again going into an aisle on the plane until his car seat was strapped in.  I could not imagine flying without his car seat.  There is no way I could physically make this six-year-old who is super strong for his age anyway, remain in a seat with standard airplane seatbelt   Eventually I will likely have to look into harnesses specifically made for airplanes for people with special needs.

Speaking of not having a car seat...

On the way back we left the car seat in our friend's car!  Brandon was NOT having a good day, and just as we were about to go through security, we realized we forgot it.  James had to go back to get it and we were forced to go through security without him and hope that he made it back before the flight took off.  I cried through it.  Not boo hoo sobs, but constant stream of tears.  I have NEVER cried in public from having to deal with Brandon's behavior.  I have cried in the car. I have cried when I got home.  I have never stood there, in front of so many people, and just cried.  But I guess there is a first for everything.  One of the TSA associates asked me, "Why are you upset?"  I think I just looked at her all doe eyed, speechless.  She asked, "Are you late for your flight?"  I just told her, "It's just been a hard day," and moved on.  Thankfully, we got though it, tears and all, and James made it with the car seat for the flight home.

All in all, it was a wonderful vacation with even more wonderful friends!















May 6, 2017

Batter Up!


Brandon has started his second season of baseball!  We attended the ribbon cutting ceremony and opening day for a brand new local special needs playground and baseball field!










Updates on Brandon's Development


There has been a lot going on with Brandon lately, and I am well overdue for an update!  

For the last three months, Brandon has been part of a clinical trial for an autism drug.  We don't know whether he actually has the drug or if he is on the placebo.  However, whether it is because of this drug or not, Brandon has made some major progress!

He has been far less self injurious.  He used to hit himself, bit himself, hit his head on the floor, etc.  At one point he was banging his feet so hard together, his feet were bruised and discolored with an orange tint.  He still has behavioral issues, but they have drastically improved!

We still have serious safety concerns as far as elopement, which means Brandon will dart and run away from us.  We be getting our autism service dog in December, and have ordered a special needs stroller to help us keep him safe.

Brandon knows all the letters of his name, even when you show them to him out of order.  He is also getting much closer to being able to count to ten on his own!  His speech is coming a long way, but he is still very unintelligible, meaning he is very hard to understand.  There are concerns of apraxia, and we will be looking further into that with his new speech therapist.

We've confirmed that he does have ADHD.  An extremely high number of people who have autism also have ADHD, so it's not a huge shock to us.  We have suspected this for a while.  It's impossible for me to separate his behaviors between ADHD and autism, but it's not really necessary at this time.  We do not plan to medicate him for ADHD at this point, but we are not excluding this as a possibility for the future.  So, nothing really changes for us with this new diagnosis.  This just provides us with additional information.

The biggest change is that Brandon starts Kindergarten next year!  He will go to same school I teach at, and I couldn't be more thankful that I will be just down the hall from him!  He will be in a Comprehensive Development Classroom (CDC), which is a special education classroom, but he will also spend time in the general education classroom where he can learn and play alongside his typically developing peers.

So, there you have it!  These are the things going on with Brandon's development right now, and I hope to update you soon with more exciting progress!


Check out this video of Brandon identifying letters!
video






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December 30, 2016

Sensory Santa

Brandon got to see Santa this year!  Thanks to a local therapy group (which we don't even use) Brandon was able to see Santa in a sensory-friendly, wait-free environment, not to mention cost-free, environment.  I will always treasure this moment of Brandon playing with Santa's beard.  This is an experience we would have missed out on if it weren't for people in our community volunteering their time to create special moments that special needs families so often miss out on.









Our Home Sensory Room for Our Child with Autism


My son, Brandon, is five and has autism.  He is not interested in toys that typical five-year-olds love.  He spends a lot of time walking on the edges of the couch, jumping on his mini trampoline, and standing in the window sill. 

We converted our office into a sensory room for him.  We got lucky because we were able to use use the money we made selling our beautiful office furniture to help fund the room.  We also use the sensory room for Applied Behavioral Analysis (ABA) Therapy.  We put this together little by little, as we figured out what would be best to go in there.




First, I know a T.V. is not something you would typically find in a sensory room, but we play YouTube videos of aquariums, and he enjoys watching his favorite movies in there.  My thought is that if it will calm him down and make him happy, it's okay for the sensory room.  It doesn't really matter what is "supposed" to be in a sensory room.  All that matters is what helps Brandon calm his body down.  However, we have to be careful because T.V. can have the opposite effect and be overstimulating, causing meltdowns.  It is rare for Brandon, but something we need to be conscious of.

The Joki swing is his favorite thing.  We initially had it it on a swing stand.  It worked very well at first because we didn't have this sensory room set up and we put it in our dining room.  It was convenient to be able to move it around when we needed to.  When we moved it over to the sensory room it actually tipped over and thankfully I was there to catch it!  We ended up mounting it to the ceiling with some tools from Home Depot.  We bought a covered chain so we can raise it as he grows.  It's not pictured here, but we also put an old exercise mat against the wall so we can push off the wall more comfortably.

The ball pit is the same one we have in the sensory room at my church.  Brandon is obsessed with it.  But, I didn't want him by himself (with his adult buddy) in the sensory room, away from his typically developing peers just because he wanted to be in that ball pit.  Santa brought him this ball pit for Christmas this year, which he got from Fun and Function.  Their customer service is superb!  I ordered the crush proof balls from Amazon because they were on sale for around $35.

A mini trampoline can be found at most retailers.  It's a must for my sensory seeking little monkey, and we've had it for years!  Most autism families I know have one of these somewhere in their homes.

The bubble tube was the most expensive part of this room.  My mom went halvsies with me on it.  It's called the "Budget Bubble Tube" from specialneedstoys.com/usa.  We actually purchased it through a local shop who order from Special Needs Toys.

We use the table for therapy sessions, which we got at a garage sale for five bucks.  The curtains were only a couple dollars at Goodwill.  The Pea Pod was something we bought from another special needs family who didn't need it anymore.  With as much as everything else costs, it feels good to say I got a good deal on some of these things...even if they are smaller items!

The Balance Stones are one of my favorite things in the room.  They can be found various places online.  We got them from Therapy in a Bin.  Brandon walks on them bare foot, which makes me cringe.

Finally, the Truffula trees from one of Brandon's favorite movies, The Lorax, are vinyls which came from a shop on Etsy.com.











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August 21, 2016

Special Needs Day the the Fair: Volume 2


Brandon turned five yesterday!  We celebrated by going to Special Needs Day at the fair.  

We joked that they threw a fair just for his birthday!  My sister's birthday is on July 4th, and for the longest time she believed that every year the fireworks we went and watched at the lake were for her birthday!

We went to the fair last year and we had a great time.  We had no major meltdowns last year, but he did have trouble waiting in line and having to get off the rides when they stopped.  Since then we have been to Dollywood and Disney World, so going to the fair this year was not nerve-wracking.  He knows the theme-park drill for the most part.

I'm in awe of Brandon's progression in the last year.  It still feels slow moving, and while annual events can be a heartbreaking reminder, they can also help to keep that progress in perspective.

This year the lines were shorter, but he stood an waited his turn with no issue.  We walked around the fair and Brandon barely needed the stroller.  The deal with the stroller is not so much that he gets tired of walking, but it's a secure place he can be buckled in when he is feeling overwhelmed by his surroundings.  He will go to the stroller or "ask" to be picked up by putting his arms up and climbing up my body like I'm a tree.  He does this in a panicky way, almost like he is scared or very nervous.  When we were walking around, there were large chunks of time where I didn't even hold his hand.  He walked by my side, and once when he start to gallop off instead of running after him (which is my usual reaction) I just said, "Stop!"  And guess what...he ACTUALLY STOPPED!  And he stood and waited for me to catch up to him.

I even let Brandon go on some rides with his cousin who is typically developing and about a year older than Brandon.  There were some rides that were for children only - moms and dads were not allowed on.  Last year I would have said, "Hell no he cannot go on a ride without one of us." If he wanted off that ride while it was in mid-swing, he could just jump right out if he really wanted to.  This year I trusted his understanding to stay on the ride.  There was just one kiddie roller coaster that I said he couldn't go on again without me because I thought I was going to throw up, I was so nervous that he would jump out.  Right before it took off, I told my nephew that if Brandon was trying to get out to hold his arm as tight as he could...even if it hurt him.  That is WAY too much pressure to put on a little kid.  Mommy/aunt mistake, there.  I was a nervous wreck on that one!  The rest of the rides were so tame that I wasn't worried.

This is the ride I'm talking about.  See how the bar doesn't go down on their laps?  There was a seatbelt...but still.  If Brandon really wanted to, he could unbuckle that seatbelt and hop out. I know I sound paranoid.  But when you have a five-year-old child who is so developmentally delayed, you can't assume that reasoning is there...especially if he is in panic mode.



Here are some more pictures of our day at the fair!











July 29, 2016

When a young man told me he was sorry my son has autism

I went to the grocery store this evening.  It was one of those trips without a shopping list, so I was walking up and down the aisles of Publix getting things I forgot the first time I went down that aisle.  I finally got everything I needed, and of course I picked the line with the coupon issues.  Brandon made a ton of noise and some of his quirky body movements as we waited our turn.  He was happy though, and that's all I can ask for in that situation.

As the cashier was ringing me out, the bagger asked Brandon if he would like a sticker.  Brandon isn't able to respond to something like that, so I helped him out.  I said, "He would love a sticker."  The bagger looked a little puzzled, so I explained that Brandon has autism, and he isn't able to speak well enough to tell you that we would like one.  I know he would love one though.  I then realized his puzzled look was actually that he was looking for the stickers.  He replied, "I'm sorry."  So I said brightly, "Oh, are you out of stickers?"  He said "No, they're right here."  My face fell as it hit me that he was saying he was sorry that my son has autism.

I could have gone off on him.  I wanted to.  I could have shamed him by saying, "I'm not sorry about my son.  Don't say you're sorry.  My son is fearfully and wonderfully made, and my son is nothing to apologize for."

But I didn't.

I just smiled and said thank you for the sticker.

He asked if I would like help out to my car, and I told him I would.  He then asked me if my son would be okay with him pushing the cart.  It was very thoughtful of him to consider that it might upset him.  I told him that he would be fine, and that I appreciated him considering that.  I started thinking I was kind of glad I didn't go off on him. 

Walking out to the car, this bagger told my son to steer him in the right direction of the car.  (We were in one of those kid's car carts.)  As he put everything in my trunk, I started buckling Brandon in his carseat.  Brandon was already in the car, and couldn't really see him anymore, but the young man called out, "Bye Brandon!" with a huge grin on his face and his hand waving in the air.

My head darted up in surprise, and I smiled at him as he walked the cart back into the store.  My eyes immediately welled up with tears at this awkward goodbye from this grocery store bagger who had just hurt my feelings minutes before.

Consider this.  If I had attacked this young man for his "I'm sorry" comment, it is clear that it would have crushed him.  He would have gone home tonight feeling awful, and would probably vow to himself to shy away from any other autism families he meets.  For nothing could feel worse than upsetting a mother like that, and he wouldn't want to get publicly shamed again.  Many special needs parents get their feelings hurt and are quick to blast someone for a thoughtless comment.  (And I am not talking about those cruel people who have deliberate unkind things to say.  Those people are a totally different story...I'll go off on those folks all day long.)  The other thing we do is not say something, and then lay awake half the night seething about the comment, and what we wish we had said.  

Before your child had autism, did you know the perfect thing to say to a special needs parent?  I'm sure you didn't.  To be perfectly honest, I still don't.  I have several friends who have children with special needs, and since children are so different (especially those with autism), I'm sure I have said the wrong things.  My closest friends and even my own family have hurt my feelings with comments they have made.  We need to have grace with people we come across so we can educate them as best we can in those fleeting moments.  This young man at Publix didn't know what to say.  He said the wrong thing, and it's very likely he had no idea that he had done so.  Giving him grace in that moment allowed me to see what a kind heart he had, and the effort he made to connect with this little boy he just met.





July 28, 2016

Am I Doing the Right Things?

Several months ago, James (my husband) and I went to an aggressive behavior workshop.  Brandon was becoming more and more aggressive.  He would bite, hit, and kick adults and himself.  He never became aggressive towards other children, which I am thankful for.  He would become frustrated, and take it out on himself, his parents, or teachers.  Sometimes he would meltdown for what seemed like no reason.  It's not like I can pinpoint the exact trigger for every single meltdown, but typically I can determine what likely set him off.  At this workshop, the psychologist brought up seizure activity - not in relation to our specific issues, but as a part of the workshop.  

It got me wondering...could theses seemingly sporadic meltdowns be something more?  I didn't think so, but as time went on I just kept thinking, "What if?"  What if there was seizure activity going on and we don't get it checked out.  What if we find out five years from now that he was having seizures that were delaying his development, and we didn't do anything about it.  That was enough to schedule the appointment for an EEG.

I think that is a fear for a lot of autism parents.  We are constantly wondering if we are doing the right thing by our child.  I know all parents wonder that.  But I'm talking about making decisions that can drastically impact his quality of life, especially considering that all the research shows that early intervention is key.

These are the kings of things that rattle around in my brain while I'm trying to fall asleep: 
He starts Kindergarten in one year.  Is public school good enough?  Well, I mean, of course it is...at least where he would go.  I teach in a public school, and it is wonderful.  Should I push for him to be in a general education classroom?  Should he have a one-on-one aid as part of his supplemental ads and services to get him in the least restrictive environment?  But what if pushing for him to be in a gen. ed. class is actually more restrictive for him?  What if an aid is more restrictive?  What if kids make fun of him?  What if he can't defend himself.  Okay, what about private school?  He would get a lot more one-on-one attention from his teacher.  Are there even any private schools around here that can accommodate a "not functional verbal" child with autism?  Is he even considered low functioning?  I mean, he is smart, but he still isn't talking...  Okay, there is a private school for special needs.  I'm still running into the same issues in my head...is he "high functioning" enough to go there?  It's fancy.  It's too far away to drive there every day.  We would definitely have to move.  Is this the best speech therapist for him?  The best occupational therapist?  The behavioral therapist?  I should have gone private with speech earlier.  Is it really the best thing for him to have his mom working full time?  Am I too hard on him?  Am I too easy on him?  Do I give him enough attention at home?  If I tried harder, maybe he would be progressing more.

I know I am a good mom, but I'm certainly not perfect.  It's just that right now we're sitting in this limbo, where we don't know what is going to happen.  Brandon will be five in a few weeks.  He has the chance to fall anywhere in this range from being non-verbal to becoming completely verbal.  We've been waiting for three years, wondering every single day how he will progress with his speech.  All we can do is sit here and wait, and trust in God's plan for us and for Brandon.

So, the EEG itself took about 30 minutes, and it came back normal.  We talked to the pediatric neurologist in depth before the EEG so he could understand what we were seeing with Brandon.  We have to keep an eye on these seemingly untriggered meltdowns, but we think, and the doctor agrees, that it's rooted in behavior.







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