Tuesday, November 8, 2016

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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18 comments :

  1. I think you've come to the best conclusions ever.
    1. There is no such thing as "normal"
    2. Our jobs as parents are to love our children as they are and do whatever we can to support them however we can
    3. You are an amazing Mommy!

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    1. Hope,

      You are so right on all of the above (not sure about 'amazing' but I'll take it)! :) And same to you!!!!

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  2. You are such a great mommy! <3 your Reece is blessed to have you.

    also, I clicked your link for your giveaway and I get an Error that the page isnt available. :)

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    Replies
    1. Becca! It's working! Try again! :)

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  3. Becca, THANK YOU!! :)

    And I have messed with the link and not sure what is going on -- I'll keep messing with it and will get it to work and let you know!!!

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  4. I think I was at that wedding reception, too, and it was very loud! Reece was thriving in it! I remember him being right by my side during the garter festivities, lol. Love your blog, Ally!

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    Replies
    1. Yes, yes I believe you were at that wedding... :) So proud that my son was in yours and Paul's face during that magical moment. #facepalm

      Thanks for reading! :)

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  5. Our hearts break because we want the best for our babies even when they are in their 30's. But you are correct in that no matter what is diagnosed, there will still be the love in our hearts until the day we die. I agree that Reece is perfect as is Sloan and Tess, Keila, Shiloh and Leo and sweet Perry Jane. Hang in there momma.

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  6. This was amazing to read ... I've been lucky enough to hear about the steps of your journey in real time, but I have a greater appreciation to see it all together! Whew! And ps - love that kid!!

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    1. I'm long-winded... we know this! :) Thanks for always being encouraging!!!!

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  7. Oh Allyson! I'm loving reading from another mama who's gone through some of the same things we have. We had the same haircut experience. I've had the same car seat experience more than once. Teller almost strangled himself in the car seat. We had a speech delay and tubes. There were many days I cried because he could become so out of control, hit me, pull my hair...His meltdowns are getting better, but there were times I thought something was wrong. I just chalked it up to too many transitions we went through. We are more routine now and have him at a wonderful daycare. Wow! Parenting can be so stinking hard! My heart goes out to you!

    It won't let me put my name but it's Katie Heier from Kappa :)

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    1. Katie,

      Gosh... It's nice to know others go through the same thing (and I also hate saying that)! We also found that routine is key for him!!!

      Thanks so much for the note!!! I'll be thinking about you!!

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  8. You're such an awesome mom! You are his best adovacate and truly couldn't do more than you already are! So glad you can trust your instincts even when it's hard to look at the worst.

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  9. He's a cutie for sure! And you handle 3 kiddos WAY better than I would!!

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    1. Thank goodness the third is so easy! ;)

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  10. I like your mom humor! :) One thing is for sure, you have your kids' best interests at heart. I hope I would be as proactive as you are if I was in your shoes.

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