The Great Reece Update

I would say that after a very long and trying week with my middle child, I deserved a week of reward. And so far, it's been that kind of week!

Let me back track a little though.

Before Thanksgiving, I talked to Reece's occupational therapist for a few minutes after his appointment that day. She told me about the strides he was making and how he had met atleast 80 percent of his goals and she really felt comfortable discharging him by the end of the year.

Listen, that was music to my ears in so many ways!

One: he was meeting goals and not just "how to draw a circle" and "how to use scissors" - though those were the goals he had mastered. He was really doing well with transitioning which is a major area of worry I've had with Reece.

Two: we wouldn't have to worry about trying to get secondary insurance to cover the $180/week therapy fee. EEK.

Three: progress. He was truly making progress!

She said she was really going to push him through the end of the year, but we would wrap it up by New Years.

I definitely felt a sense of relief as well as caution -- I know he has really progressed this year. If I sit back and think about where we were in January versus where we are today, he's a different kid. So I feel good about him being finished with OT.

BUT it also scares me -- we don't want to regress, which is why I am on the hunt for activities to keep pushing him to work through transitioning issues and any social issues that may arise. A friend told me about a group here that I'm going to call about, but if anyone has any recommendations or tips, I'll take them!

Secondly, I chatted with Reece's preschool teacher yesterday. We've been discussing which class Reece should enroll in for next school year -- it seems early, but you enroll in January, so I wanted to be prepared!

He is currently in a very young class with two and three year olds. We did this because a) he needed to be going at least three days a week for the routine and structure and this was the only class available with three days and b) they felt that he would thrive in this room, being the oldest, and working on things that at the time, he really needed work on.

Reece has been with Ms. Heather since the beginning of the summer and has done so well with her! She has 'learned' Reece and they get along great!

She said she had been thinking about where to put him and going back and forth with the director on the topic. And she really felt that he would be fine in the pre-K class, which would be two levels from where he is now. She said she thought that he would do just fine -- he's smart enough, his behavior is not an issue anymore and he's sweet. Plus if he was going to go five days, which I think he needs to, he would be with a great teacher who is very structured, which is what he needs!

Again, people -- music to my ears!

To think about where we started in June at school to now, I'm just proud...

And the kicker...

Today, we went to the ear doctor for a follow-up appointment. Reece had tubes put in June 2015. Before he had the tubes put in, we tried atleast two times to get him to do hearing tests (which involved putting these little, soft earbuds in his ears and sitting in a sound proof booth, pointing at noises) and he would NEVER do it. He would lose his mind and scream and freak out... and I would leave sweating and crying.

The last appointment we did was just with the doctor and he did great, letting the doctor look in his ears.

This time, we were doing hearing tests AND the doctor. I was a little nervous, but I had talked to him about what we were doing, what the doctor does, and did my bribe of a new toy (because after what we have went through at past appointments, I would buy him anything to get through this without losing it).

He walked in there, he did all three hearing tests, met with the doctor, let the doctor take out one of his tubes that was about to fall out and he did it all with a smile on his face.

If that isn't MAJOR progress, I don't know what is.

But all I can say is how extremely proud I am of this kid. We don't know what is running through his mind when these things he doesn't like are happening. Heck, I don't know what is running through his mind right now and I wonder what he's thinking about when he's staring out the window in the car.

He is a funny kid. A quirky kid. And that's what he's going to be. But he worked hard this year to overcome fears, which takes some people a lifetime to do.

I know that all of the hard stuff isn't over. Sadly, I'm not optimistic enough to believe that! BUT... I do think we have moved past some things that at this moment, were very hard for him. And that in itself is a huge victory!


XXOO,
Allyson

My Reece: Part 2

A few weeks ago, I posted about my Reece and how we came to learn about Sensory Processing Disorder (SPD). 

When I had left off, I was explaining how I had read that occupational therapy (OT) was the best help you could give someone with SPD. I had Reece evaluated at the end of January 2016 and we started OT in February.

But to back up a little...

I had mentioned that Reece had a speech delay and how I basically just blown it off because Sloane had been exactly the same. When we were living in Minneapolis, I had someone from the school district come to our home and evaluate her when she was three to see if they thought we needed to get help for her. After evaluating her, they told me it was completely normal for someone her age to be speaking how she was speaking (there words, but A LOT more jibber jabber than anything else)! They said that one day, it would just click for her.

And one day, it did!

And she hasn't stopped talking since!

So like I said, when I noticed Reece wasn't speaking clearly, just like his sister, I didn't worry. I was sure that he would be like Sloane and one day, it would just click.

But by his three year checkup, our pediatrician recommended speech therapy - immediately. Like without even asking questions. So I was freaked out. But found a place not far from our home that provided therapy services.

I took Reece in to have him evaluated and he qualified for speech. But of course our insurance did not cover speech therapy and it was going to be $140 a session! And they wanted him to come once a week!

That's a lot of money, people

That's a lot of money to spend that you weren't planning on spending, but needed to spend to help your child.

That was a tough one! I knew he needed the speech but Matt and I both were very concerned about the cost of it all! Luckily there is a secondary insurance you can apply for in Arkansas called TEFRA that we were told we could apply for that would significantly help lower our payment and that they would make a note we were waiting to see if we qualified so we wouldn't pay until we found out (kind of scary to think about because if you didn't qualify - $140 a week adds up over the 2-3 month time span it can take to find out if you qualified for TEFRA)!

I also learned that it was hard to qualify for TEFRA unless you had at least two 'disabilities'.

I HATED this.

For a few reasons, but mainly because my son did not have a disability in my eyes. He was perfectly fine. But to have the chance to get this insurance, I had to make him sound like he had a disability.

Reece had started going to speech and loved it, but after the third or fourth appointment, his therapist recommended he get evaluated for OT. Which means all of that paperwork I had filled out for TEFRA - all 24-30 pages - needed to be redone. Because now he might have two disabilities.

My brain: THIS SUCKS! He doesn't have any disabilities!  ----- YAY! We might get TEFRA because we will qualify because he has two disabilities.

Parenting, people. Not for the faint of heart.

Started off with the headphones because it was quite loud! But took them off just after the game started!

Sadly, we ended up switching to a new therapy place because we NEVER heard back from the previous place we had been going to. It was a weird situation and I won't get into it, but when you don't hear back from a place that is suppose to call and schedule his weekly appointments, you tend to not trust them as much with your child.

In the end, it was a blessing in disguise because I had found out that the school district had an education coop that provided free services to those children in need and in the school district.


That was us!

So I contacted them and we had Reece evaluated for speech in August 2015. It was atleast a two-hour evaluation which I didn't know (and by then I was five months pregnant and did not come prepared with a drink or snack!), but Reece surprisingly did well. It's hard to be present in the room when they are evaluating him because I could feel myself staring at him with these eyes of "Come on, Reece! You know that answer!"

They talked to me afterwards for a few minutes and brought up how they had a couple of red flags in regards to autism.

Autism.

A word that I will hold with much higher regard than I ever had before.

And a word that is TERRIFYING to hear!

They said because he repeated things they would say (for example: Lady - "Reece, where is the boat?" Reece - "the boat?"). He had done that for awhile and again, I thought nothing of it (and he still does it). But they said that repeating words can be a sign of autism.

What? How, again, did I miss this?!

They said there wasn't anything else that really bothered them since he was social and looked them in the eyes, so they wouldn't focus on that part. I said "OK" and we moved on.

Two days later, after waking up many times at night thinking about everything Reece had done or was doing, I e-mailed the gals he gave Reece his evaluation.

"I cannot live like this. If he has autism, I need to know."

They sent me an autism screener to fill out that would give them a good indication of whether or not we needed to proceed with any kind of autism evaluation.

I got the screener, I e-mailed it to my mom as well, with firm instructions that we needed to be as UNBIASED as possible for this because it was very important (it is very hard for my mom to be any kind of unbiased when it comes to her grandchildren)!

I took the screener, I had Matt do the screener and mom told me what her answers unveiled.

According to the screener, the only section that made him more 'questionable' as to being autistic, was the speech delay. I was told again that we weren't going to focus on this because clearly, he was not autistic.

I was pleased with that, but still... it's something that never leaves your mind! They did recommend an evaluation by someone with a doctoral background just to relieve any concerns I had.

We got Reece started with speech therapy through the co-op in October and for a child that has a hard time with transitions, he was put through the ringer his first year with speech. We went through at least three different speech therapists over an eight-month period.

**Sidenote: this year the co-op has been great and VERY organized which is wonderful - I get notes back from his sweet therapist, Evie, who he meets with at his school, once a week for 45 minutes.

Loud noises didn't seem to bother him at this wedding reception!

So... fast forward back to January 2016 and his occupational therapy evaluation.

A sweet therapist named Lori took Reece back for a one-hour evaluation while I filled out some screeners on Reece. When he finished up, Lori said we would hear back from her in a week with results and try and get Reece on her schedule (but he threw a fit right before we left, which I was upset about but happy for her to see what my real worries were with him).

A week later, we heard back from Lori and she said I'd be happy to hear that from my paperwork, they weren't as worried about SPD. But it showed that Reece was lacking in fine motor skills.

AKA my three-year-old wasn't great at using scissors or drawing circles.

Ummm.... yeah. I would agree and I would say I'm OK with that. That will come with time and age and I could see Reece grabbing scissors at home and taking them to his hair, to curtains (I apparently have stories to share on both of those things as a child), to whatever he could cut.

So the fact that he couldn't use scissors perfectly was not a worry.

I found out that to send Reece to OT once a week like he needed, it would be $180. A week.

Again, that is a punch to the gut (and I was now 8 months pregnant). Our insurance would cover 20 percent until we hit our deductible and then they would cover 80 percent after that.

Luckily our sweet Tess came in February so we hit that deductible quickly and have been paying $20/session since.

2017 will be a new story. And the TEFRA paperwork is being filled out. Again. With two disabilities.

AND lastly... to go back to austism.

Reece after one his last successful haircuts - such a big deal!

I was certain I wanted to get Reece evaluated by a specialist for someone to give us some sort of diagnosis. Was it austim? I don't know, but if it was, life wouldn't stop. Because Reece is who he is and we would continue to treat him as we always have!

Would it be something we had never thought of? Who knows! Would it be nothing? I doubted it and hoped not only for the reason that I needed to know how to help my baby when we had issues arise. I wanted to be able to talk to his teachers and explain Reece as easily as possible without spending 30 minutes on it and making him sound like a sweet cuckoo bird (or myself as a cuckoo mommy bird)!

One of our occupational therapists (we are now on our third) gave me the name of a child pyschologist in Fayetteville and said that if I wanted answers and someone to mentor me through some things, this guy was who I should go to!

I called, of course asked the cost (nothing is cheap, my friends, nothing is cheap) and when we could get him in.

The cost wasn't awful unless he had to see the psychiatrist routinely (lord, I hoped not!). I did ask how we would know if we would have to come back once or many times. The front desk rep said that "if he needed medication...." That was all I heard.

Medication? Really? That's where you start? I know she did eventually say he might not need anything and we might not have to come back at all.

So... Matt, Reece, Tess and I loaded up and drove the 25 minute drive to meet with this doctor. We walked into the doctors office and it was SUPER small, but filled with legos and blocks and cars - Reece just narrowed in on what he wanted to play with and went for it.

After chatting for about 30 minutes and the doctor asking us questions and him talking to Reece and playing with him, he told us that right away, when Reece walked in so focused on one thing and not making eye contact, he immediately thought austim.

But then when Reece started asking questions and showing the doctor how things worked and talking to him, he said austim was thrown out the door. He said because he was looking him in the eye and being social, he wasn't concerned about autism.

It was interesting to watch him interact with Reece and then at the end tell us how very smart he is and a very analytical thinker. It was a proud mom moment for sure. And when you go through all that we have gone through to get to this, it's nice to have those moments and for others to tell you good things about your child!

We left with a language disorder diagnosis with some slight OCD -- the doctor asked if anyone in our family had OCD and my response was "Well, I have never been formally diagnosed, but I'm certain I have it!" I'm sure in his mind he was like, "I hate mom humor."

The language disorder does explain how frustrated and upset he gets when we can't understand what he is trying to tell us. I don't know if it explains everything, but it's something!

We left feeling good about the doctor and his diagnosis and had closed the book. Sort of. I continued to go back-and-forth in my head on if we should get a second opinion. Only because I was scared we had loved that he said Reece wasn't autistic. Was that the answer we wanted?

Or was I begging for someone to tell me he was autistic just so I could move on? It's strange, I don't know if I can fully explain it.

When I told Matt how I felt like we should get a second opinion. And this is what he said.

"What is it going to change?"

And it's true. What WAS it going to change? Matt was more worried that we would continue to seek more opinions and more opinions and eventually, someone would say he needs to me medicated, which we don't think is how Reece needs to be treated.

I was upset, but not because of his answer, but because of the entire situation. I just want Reece to be like every other four year old. I want him to be quote unquote normal. And there is no such thing! There is no such thing as a normal four year old!

If I told my best friend that I wanted Reece to be like her four year old, she would probably laugh at me and say she wished her son was more like Reece.

There is no winning!

The only winning part is Reece. He is who he is. Who knows where we will be in one year with him - he might be hitting t-ball home runs! Or he might be taking a music class. Who knows! What I do know is that I can't change him. We can continue to help him along his path and find opportunities for him to thrive in. It's never going to be easy.

But as my grandpa Bob always used to say, no one ever said life was going to be easy.


***************************

I'm so sorry for the long post - I wanted to make sure I got everything in here. I had people asking me questions after my first post and I wanted to have some answers!

And since you stuck through that entire post, I'm going to do a GIVEAWAY! Enter below for a chance to win a Morphe Eyeshadow Palette from last week's Friday Favorites!

Thank you all, again, for reading and following along on my crazy journey! I have had WONDERFUL support from my very smart friends and our wonderful families. We are very lucky to have so many people on our side and who also want what is best for our Reece!

XXOO,
Allyson



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My Reece: Part 1

 When I started this blog, I mentioned that I really wanted there to be an open dialogue between myself and the readers. And I was serious.

I was truly hoping that people would leave comments on the blog or on social media and I have definitely gotten feedback which is really fun!

But this is a part of my life that I’m very happy to share with everyone, but that takes a personal twist.

Because it is about my Reece.

My sweet Reece who was born four years ago early in the morning post 4th of July. Our firecracker baby!

There was nothing unusual about my pregnancy with Reece, except that he gave me sciatic nerve pain — I attributed that to him being a male. :) But everything else was fine. His birth was super fast, but fine. Nothing ever would have made me blink an eye about him, until a few months after he turned two.

It all really started on a gorgeous fall day in Elk River, Minnesota at my cousin Alec's first home football game.

We walked up into the stands with my aunt and uncle. I came loaded down with things to keep the kids entertained because I was NOT leaving that football game early!

We all stand up when they are about to kickoff and start yelling -- perfectly normal for a football game kickoff -- but Reece hunkered down and covered his ears. It was the strangest thing! It was like it was too loud and scaring him! He had been in louder places than this before but I still thought it strange. I got out the headphones and iPad for him and he settled down.

I took this at the football game!

But I just remember thinking… "That was different."

We went back a few weeks later. Same thing happened. Finally by halftime, I called it and we took off for the car. But before we left, we all of course had to go to the bathroom. So I attempted to wait in line for the large port-o-potty when we were bamboozled by a clamor or high schoolers. LOUD high schoolers.

And he lost it.

Covering ears. Screaming cries.

Screw the bathroom. To the car.

A few months later, we moved from Minnesota (to Kansas for a month and a half while our house was being finished) to Arkansas for Matt's work. And that is where things seemed to escalate.

Reece's speech was delayed, but so was Sloane's. We had her tested at the age of three and they told us it would come and not to worry. It did come and we stopped worrying. I just assumed the same would be for Reece.

But it wasn't.

He was 2.5 at the time.

His teachers suggested having his hearing checked because it seemed like he couldn't hear them unless they were in his face. I said I had never thought about it, I assumed he was ignoring me like most children do! But said we would absolutely look into it.

So off to the pediatrician. Then to an ENT. Where we learned the incredible anxiety Reece had worked up over doctors. They tried to do two easy hearing tests; one where they put headphones in your ears (similar to the Apple headphones) to monitor your hearing and one where we sat in a soundproof booth and they would play different noises in different parts of the room to see if he would react.

He LOST it both times they tried these things.

He lost it when the doctor tried to look in his ears.

We did this three different times until finally they said they'd have to sedate him to see in his ears and see if he needed tubes. It was a sad day at the hospital but he did end up needing tubes and I do think that really helped his hearing and speech!

This was June 2015.

We had some other major moments occur - the biggest meltdown/tantrum/out of his mind moment I had ever seen when leaving from a hair salon after attempting to get his haircut. He walked up to the salon, said nope, walked out — walked back in, said nope, walked back out. Finally I said to the car. I try to get him in his seat and that was it.

He was screeching to get out of the carseat, he was kicking, hitting, doing whatever he could to try and get out. I had to get strong and try not to hurt him, but get him in the seat. We finally pull away, him still losing his mind, and he somehow has maneuvered out of the seat.

I stop the car and pull over. And just sit there. And sob. Because at that point, I didn’t know what to do. I was so mad at him, but so scared for him, too. Also, Sloane was sitting there, covering her ears… I’m quite certain it was as mind boggling to her to see her brother acting this was as it was to me.

I finally crawled in the backseat, completely unbuckled him, and just sat there. I gave him some time to calm down.

Five minutes later, he looks at me, grabs me, hugs me and says, “What’s the matter, mom?”

You guys … its as literally like an out-of-body experience for him. Like when he does these things, I don’t think he even knows what is happening.

It was after this that I knew something wasn’t right. I didn’t know what to do, I didn’t know who to turn to (I still feel this way most of the time). I felt helpless.

But wanted nothing more than to HELP him!

I remember googling (literally) “how to give a haircut to a kid who hates to get haircuts”. There were lots of pages, lots of forums I clicked on and finally a mom mentioned her son had Sensory Processing Disorder (http://www.ascentchs.com/developmental/sensory-processing/symptoms-signs-effects/). I had never heard of this, but went and read. My dad happened to be visiting and I said, “Dad! Listen to this…” I read off some of the ‘symptoms’ and we both said “Wow… that sounds like Reece!”

Do you THINK he needs a haircut?!!!

Now, not everything is Reece, but at least four or five of the symptoms were Reece: loud noises, language delay, difficulty following directions, transitioning.

I read on that the best way to help someone with SPD was to get them in to occupational therapy. I immediately checked on this and we got Reece in for an evaluation and had him starting by January 2016.

We bought him headphones to help with the really noisy places. This was the first movie he actually sat through!

Didn't bring the headphones to the baseball game because we didn't think we needed them but as you can see, he probably could have used them! 

After one of our occupational therapy appointments... it had been a rough week.

I feel like I need to say this, even though I’m sure it’s a given. But I love this kid with my entire being. He makes me so happy and so proud, yet so angry all at the same time! He is very smart, he is very sweet, he has the greatest chuckle next to his papa and he loves everyone. But he is a tough cookie and sometimes I feel like I'm walking on eggshells to keep him content because I don't want to deal with a meltdown.

The kid can have some smarty pants moments ... such as this, when he typed his own name!

But he's my Reece. Quirks and all.


XXOO,
Allyson

Sidenote: I'll do a follow-up post with more details as to what we have done to help him, doctors we have visited, etc. And I'm super-sorry about this post and how it's probably a little confusing - I would type, then stop and think, then type, then stop and think... :)