i hate post-it notes.

The night before we took Maddy for her initial visit with Dr. MAL, I wrote down every one of her very obvious autism symptoms on a pink post-it note.

Like a cruel to do list.

I don't know if I chose that small piece of paper to try to minimalize the very large amount of symptoms she was showing. As if I wrote it on a smaller piece of paper that the symptoms would also minimize and eventually shrink away. Disappear in some land fill. Forgotten. Like they didn't matter.

But they did matter.

And they didn't disappear that way.

I remember pulling out that dumb pink post it note with trembling hands as I tried to hide what I already knew. My baby had Autism Spectrum Disorder. She was 1 in 64. To me she was 1 in an infinity.

Last week Maddy went to see Dr. B, her eye doctor, to see if she was ready to start vision therapy. It was clear last year that she was suffering with a delay in reading and had some visual tracking issues but everyone wanted to wait until she was just a bit older to make sure she was mature enough for vision therapy.

I walked into that meeting fully expecting to be leaving with an arm full of hand outs of tracking exercises and letter reversal games. I was not expecting to leave with a yellow post-it note with three names of a diagnosis she had just been assessed with. A post-it note that I had asked him to give me with the name of the diagnosis so I could start to process something that I had never heard of before. A post-it because I didn't want to wait for the official letter.

A stupid ugly yellow post-it note with the words "dyseidesia" written on it.

Maddy has been diagnosed with Orthographic or "surface" dyslexia. It means that, in Maddy's case, her brain has no capacity for sight words. That she can't look at a word and just know what it is. She CAN phonetically sound out words up to her grade level but if you asked her to read a sight word, she will be completely lost.

Take the word: EYE

You cannot phonetically sound out the word eye. It's just eye. Or the word "Said" - that is just said. not "s - ay-d"

There is no vision therapy for this.

As Dr. B explained to Maddy..."it's like being color blind. You can't make someone see a color and it's not your fault that you can't do it. It's something miswired in your brain. And that is how it is."

Now....hang on...I KNOW there are plenty of people out there that are dyslexic and they are highly successful people. I KNOW there are things that I can do to help her maneuver through this.

I know.

But hang with me for a minute....this girl has been dealing with Autism Spectrum Disorder since the age of 2, was diagnosed with Sensory Processing Sensitivity last year....and now Dyslexia.

It is a devastating blow.

Like 2 steps forward and 1 back at every corner.

She's a fighter. But even fighters get tired. Even fighters need a time out. A rest. A moment to catch their breath. To sit in the corner and gather their thoughts and their courage.

Another tidal wave brought us off the shore and we need to find another life preserver. New considerations. New curriculum. New visual input.

She said to me, "I am so mad at my brain. I'm so mad at my brain. Like so mad."

I said, "I know, baby. But we can do this. We'll get this. We will rock this and you WILL read."

Standing strong on a mountain  of uncertainty. That's where I have to be for her. There is so much in her life that keeps slipping out from under her. I cannot be one of them. I must be the constant. Despite my own doubt in myself, I am thankful for a loving Heavenly Father who knew this was coming and was not surprised. I have to find peace in Him, in His goodness. In His knowledge of how Maddy's life will proceed.

Battling autism, sensory processing, and now dyslexia as well as my cancer. Yep. But God IS good and we will march on. Forward. Ready for all the bullets of doubt, confusion, and insecurity.

Lord, be with us.

on the cliff of trepidation

Maddy has been working steadily for the past year and a half at occupational therapy working on sensory integration. When she started last year she was falling well below her peers at many different tasks, was having incredible anger and rage outburst, and was just not her happy bubbly Maddy self.

Stephanie, her OT from the beginning of our autism journey, evaluated her and we developed a plan to help her catch up.

And again Maddy did what Maddy does best. She flourished in therapy! Making headway and progressed 2 years worth in 1 years time.

Her latest evaluation had her sitting about 2 months below her actual age and at a point where Stephanie felt it was time to scale back therapy.

Something that Maddy is not happy about and I am anxious about.

Most people would think I'm nuts. Most people with special kids would rejoice at the chance to scale back therapy.

Most people are not me. Most people are not raising Maddy. I am. (Not to discredit Justin who does raise her but when it comes to therapy and education - I'm in charge of that route...by default or by the fact that is the role God gave me...who knows. And also not to discredit the amazing people in my life that do take care of her from time to time...yes it takes a village, people!)

We did this before. We scaled back therapy. And were coasting along great until we crashed into the reality that she was slowly falling behind her peers and we were blindsided.

So forgive me if I am a bit anxious about not wanting to do that again.

Maddy loves therapy. She loves going to see Steph and play games. She thrives off of one-on-one time and let's be honest, it's what she knows. She doesn't know much about life without some kind of therapy. It's comfortable. It's safe.

Yet it's time. Regardless of it all, it's time. Time to take a leap of faith and believe that she can fly again on her own.

I try to think of all the bright sides...how ot therapy costs a lot of money each week and while our new insurance does cover better than the old, it does not have a deductible when it comes to rehab therapy....so they cover what they cover and we pay the rest....and let's be frank - we will be paying on her Rehab bills for a very long time.

How we can have an actual normal week of school. Instead of going Sunday-Thursday with therapy on Friday and Saturday being our only day "Off" - we can now do school Monday-Friday like everyone else and enjoy two days off!

How this is even possible. That Maddy has worked so hard and progressed so much. This is such a great thing not to be overshadowed by fear. And fear it is.

Maddy has 3 weeks left of OT and then we will transition to a lego-based social skills group. She will build things and work on social skills.

So for the next month we are working steadily to develop Maddy's visual motor skills. Yes, believe it or not but our resident gamer struggles with this. It's hard for me to wrap my brain around it as the girl can outsmart me in any video game and yet can't build most standard lego sets or copy a picture drawn before her.

I think I get it in one sense as it reminds me of how my brain cannot compute geometry. It can't. Trust me. I am a whiz at Alegbra...I actually really love it...but if you start throwing in geometric shapes, it shuts down.

I love puzzles and legos and building ikea furniture. But don't ask me to draw.

Every one's brain is different. Maddy can conquer a video game in 2 days. But drawing a cube? forget it.

So we are working. Today she built a birthday cake:

Because let's face it...we are going to ask her to combine two very difficult tasks in her brain at the same time: build things and be social. And while Maddy is incredibly social...she is socially awkward. She loves people but does not pick up social cues. At all.

The only thing worse is if we asked her to build things, be social, and be in the middle of a circus parade.

Thankful for fun legos....trying not to spend a fortune on finding ones that she can build on her own without overwhelming her.

Lego group (though unofficially called that as it is NOT sponsored by Lego and I could get in trouble by calling it that) starts the end of June and ends the beginning of August. Thankfully it's only weekly so we are trading our therapy days from Friday to Wednesday evening.

Also in the therapy work - we are drawing on the window while we work on directional phrases....yes, my mushing kids learned Gee and Ha instead of Right and Left...

It's change. And no one likes change.

Especially kids on the spectrum. Regardless of where.

The Bible tells us not to fear. And I think it tells us so many times NOT to fear as a reminder as it is purely human nature TO fear.

Yet, Trust Him, we will.

letters, numbers, and lizards

It has been awhile. Sorry. Maddy has mastered quite a few more reflexes in this time. She is working on one that is nicknamed "the lizard".  After she masters The Lizard, she will have one remaining reflex left.

It is quite strange, baffling actually, how these different reflex responses all work together to help out other areas of her body. If someone had told me five years ago that having Maddy lay on the ground and crawl like a lizard to help her handwriting skills, I would have laughed at them, called them crazy in my mind and walked away.

Strange thing is that it's true. If I haven't been witnessing it with my own eyes, I probably would still be questioning the validity of it.

Either way, writhing like a lizard or pretending to be Superman, bundling like a starfish and all her other moves have done wonders on her.

For that, I am thankful. So thankful for her willing spirit to accept that she has a hard road, God and Jesus love her, and she can be a very happy and highly functional kid with autism.

Granted some days are harder than others. Some moments are harder than others.

She still has anger management issues, something that is very common with children with autism as they reach developmental milestone and hormonal changes with puberty. Yes, I said it. She may only be approaching the tender age of eight but we all know how puberty is effecting girls earlier and earlier. So we remain vigilant with helping her find new ways to express herself in healthy outlets with positive outcomes.

She still can throw things and run away faster than anyone I know, but she is getting better at managing herself. We all have moments when we want to throw things and run away. At least, I know that I do.

Recently at OT, she was tested on her handwriting skills. Handwriting, cutting, and reading have been major road blocks on her journey through school. Cutting has finally be mastered to a well enough degree. So handwriting has been the main focus. I was very pleased with her test results.

Most first graders score anywhere from 85% to 90% and most second graders score from 95% to 100%. Technically Maddy is in second grade but she is a very young second grader and could very easily be an older 1st grader....the beauty of a June birthday. She is reading at a 1st grade level yet doing math at a third grade level with many of her other subjects being in the 2nd grade range. This the beauty of homeschooling...we can take more time on the things she is lagging in and go faster on the concepts she understands. That creates a much more obedient and happy kid.

It might not seem like much but it's huge. To be scoring this well, is a big WIN. And Stephanie, her OT, commented that she could have done much better at her number handwriting but was clearly DONE with testing that she got lazy. Ah, yes. Attitude makes a difference. So in actuality this is probably on the low end of her ability.

It's a win. I'll take it.

Her reading is coming along. She is still behind but she's not losing ground. She is slow and steady and that's the way we'll take it. She is developing more of an interest and can read almost all of her 3rd grade math papers by herself...another win. She is starting to enjoy it. I think I'm still missing a piece to the reading puzzle for her but I also feel like we are on the cusp of something great so we'll keep plodding along.

She is sweet, caring, loving, funny, and a JOY. These are all blessings. She can talk, write, count, sing, interact, tickle, run, swim on her back, sleep through the night, use the bathroom, eat.....all things that some kids as severe as she was on the spectrum will never do.

In the last month, she began showering and washing her hair on her own. Another win.

I am incredibly thankful for her. For all that she has accomplished, for the love she has in her heart. Her smile. Her drive. She is definitely a gift.

In April we will start Social Skills Group again in hopes of continuing the overwhelming process of understanding social interactions, making friends, asking questions about others, and learning when and what to share. Some might think by keeping her home we are not helping her learn social skills. In all actuality, we are teaching her in a safe environment so she can learn without the very real reality of bullying in school. While I love our school system here, I know that Maddy's quirks make her a target and in order for her to grow out of some of those quirks, she needs positive reinforcement. Not that we keep her home 24/7 - she has activities and other homeschool friends that help her along the way.

Thank you for all who have kept Maddy in your prayers. We are praying that we will be done with OT services by the end of summer but time will tell. One Friday at a time.