Our Journey During the Past 3 Months

I THINK I'm ready to write out everything that's been going on for the past three months.  But because there is so much, I'm not entirely sure where to start.  So, I'll start by saying that everything is just fine.  We are all healthy...kind of.  

The story starts here:

Tyler has always been the kid to run and jump on the couches, hang upside down/change positions while watching TV, scream at the top of his lungs while playing, and have a hard time sitting still when it came time to focus.  We’ve always chalked it up to being a boy.   This is what young boys do, right? As a young kid, he would have terrible outbursts and tantrums when in trouble.  Many of you even got to witness them.  He would flail his arms and rock back in forth at school and at home.  The only way we could calm him down was to bear hug him until he calmed down.  He has mostly outgrown this, but occasionally he will do this when he gets really upset. 

His preschool teachers always noted that Tyler was a little socially awkward.  He would play on his own a lot (which we always considered normal at his age).  He would bump into kids on purpose in line.  

Tyler has also struggled with his speech from an early age.  We never really knew what he was saying for years which was frustrating for him and us.  We'd joke that Tyler would have his own little conversations in his own little language with the Mickey figurines he cherished so much.  But the lack of communication between us was a burden on everyone and his development.  Finally, we had him evaluated and he was accepted for speech services through the school system at 5 ½.  He continues to receive speech therapy in school to date.  

At the beginning of July, I noticed some regression with Tyler’s behavior.  One evening while sitting on his bed before bedtime, I recall him trying to tell me something.  However, the words and thoughts were just not coming out.  He has always been a slow talker.  It's obvious that he thinks a lot before words come out.  You can usually see him thinking before he answers or says something.  However, this evening nothing was coming out at the typical "Tyler speed."  And what pieces came out were very sporadic.  I also noticed some strange stuttering.  It wasn’t the typical stuttering I think of.  It was more repeating sounds at the end of his sentences.  For example, “I want to go swimming…ing…ing.” 

At the same time as the speech, Tyler started putting his hands in his mouth.  This literally happened over night.  It progressed fast from just sucking on his fingers to licking up his arms.  He does this 24/7.  When asked why he does it, he says he just has to put everything in his mouth.  He gets ulcers in his mouth which are probably due to his hands being in there.

In addition to the above, we had noticed some different behavior with Tyler.  He seemed more moody or frustrated.  He was tired.  I had mentioned several times to my mother and husband that something just didn’t seem right.  He wasn’t responding to simple instructions.  For example, one day I told him to go upstairs and brush his teeth.  We both had eye contact, and he repeated the instructions.  I watched him go upstairs and walk the opposite way to do something else.  He didn’t process what I was saying. There are many examples of this.  Josh and I spent a good chunk of the summer yelling at him, figuring he was being defiant and picking up weird habits.  And of course, we blamed it on having no schedule during the summer.  But as summer closed, we started to do some research, started private speech once a week, and realized that this might not be something he is doing on purpose.  We've cut gluten, artificial sweeteners and dyes completely out of his diet in an attempt to see if something was triggering this in his brain. 

My biggest fear was that school would start and he'd have trouble.  And it's already starting.  I reached out to his teacher during the first week and without telling her specific symptoms told her that we had noticed some things over the summer and we want her to feel comfortable telling us if she sees something herself in the classroom.  She immediately responded saying that she has to repeat things many times to Tyler.  One example is on the first day she wrote on the board and told him verbally to put his school supplies away.  When I noticed them in his book bag after two days, I asked him why they were still in there.  He told me he wasn't supposed to take them out and then got really upset.  A simple instruction just didn't register with him.  After checking back in with her a week later, she relayed to us that he was not able to turn in anything at school.  He wasn't processing instructions, and he couldn't stay on task. Actually, the email was more descriptive than I'm typing now, but it still upsets me to read those words even though I'm grateful his teacher is so open with us.

Tyler tells me frequently that he cannot focus.  He says he feels tired and that his brain is on fire. We had to do a poster project that was all about him over a weekend, and it was all I could do to get him to tell me something he liked to do. Now that "real homework" has started, we spend an extended about of time getting him to write one sentence.  His handwriting has worsened, but I want to think that's because he's been out of school for the summer and needs to get back into the swing of things.  Things are just not the same as they were.  I ran into his first grade teacher who was shocked to hear what had been going on.

So, what have we been doing?  Well, what haven't we been doing.  

I feel like we've been on a roller coaster since the last week of August.  Aside from starting private speech therapy and changing his diet, we've done more things involving doctors, specialists, and centers.  Originally, I had scheduled for him to have an Occupational Therapy evaluation for Sensory Processing Disorder.  However, I ended up cancelling that appointment in order to start in a different direction.   

On September 9, we had a neurology appointment with a local office who's highly recommended.  Based on our discussions and her observations, she has recommended the following:  an EEG scheduled 9/17 to rule out seizures; neuropsychological testing scheduled 9/26 to help form a diagnosis (if any), and a follow-up visit to discuss results.  She is concerned that anxiety might have triggered a lot of this.  So, of course now we are trying to pinpoint what anxiety he is having.

On our own, we researched a placed called Brain Balance (which we have a location around the corner from us), and we're in the middle of cognitive and sensory evaluations.  Based on his evaluations at this center, we would consider enrolling him in an after-school program where they work to strenghten the weaker brain hemisphere that's not functioning as well by doing specific exercises.  This, coupled with a nutritional plan, has led me to be interested in this center.  

 Are we still sane?  

Well, it depends on the day.  I spend my already chaotic days on the phone with his school, therapists, doctors, counselors trying to keep people in the loop.  I schedule appointments it seems like every other day.  I spend much of my day confused, annoyed, depressed, but then thankful that things aren't worse than they could be.  I don't like labels at all.  I don't want my son having a label of ADHD or a "sensory child."  I also don't want my kid to pop a pill every day (although I'm not shunning anyone who chooses this treatment).  It's just not my first choice.  I don't like watching Tyler cry in frustration at homework or see him with him licking his hands and arms because "he has to put everything in his mouth."  I don't like having to repeat simple instructions over and over again and walk him up to make sure it happens because if not, he will simply forget after 30 seconds.  I lack patience a lot.  I cry a lot.  I've been moody a lot.  I feel broke.  Josh, who naturally internalizes things, is probably about to lose his shit any day now.  (many jokes here).  

But more importantly, how is Tyler?

My answer to this is a confused one.  Part of me wants to say that he really doesn't grasp what's going on with all the appointments and the discussions that we try to not have in front of him.  Remember this is the same child who didn't ask us where we were going on our surprise 10 hour drive to Disney World.  But at the same time, he is not his easy, carefree self.  He is often moody and very emotional.  He breaks down at homework time.  He gets angrier with his brother.  And he is tired.  

Really up until this point, everything has been about research and gathering information.  And now that we have a bazillion appointments scheduled, I just really want to know how to help Tyler in the meantime.  My entire September will be spent transporting him to appointments and follow-ups.   We just want answers, and then we get the privilege of making a decision about how to move forward.  

 I'm grateful to have support of many friends and family members along this journey.  The only reason I'm choosing to share this with an expanded group of people is to ask for prayers, advice, and any stories that might help alleviate any stress.  

Now that I've shared this much, I will certainly update here as we find out answers.   Stay tuned.