Sunday, September 11, 2016

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.

Monday, May 30, 2016

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.

Thursday, February 25, 2016

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.

Friday, October 2, 2015

the lastest reflex - T to the L to the R....

Tonic Labyrinthine Reflex.

That is where we are....the inability to totally integrate this reflex has a lot to do with spacial awareness...I think this video explains it best:

Tonic Labyrinthine Reflex

Maddy has been working on this reflex for much longer than 30 days but it is a very hard one to master. Actually, when I do her daily therapy with her, even I have a hard time doing this one right away too. It's not the easiest but she is getting better at it.

Her OT says she thinks Maddy may have it mastered in about 2 weeks....the next sensory step she also tested positive for (these are the types of tests you want to get a negative) so we'll be moving on to that one soon...

It's a process. I get that. Maddy is, thankfully, always happy about it and doesn't complain or whine about having to do these extra things.

It never gets easier watching your child struggle with something a "baby" does naturally.

But she smiles. She says she loves me and that I'm the best mother ever.

And that helps.

Wednesday, August 12, 2015

the good amongst it all.

Breathe.

I have been avoiding this. Avoiding blogging about the recent developments. Because no one likes to talk about the bad stuff. Especially when you've already went down that road.

So while the "bad stuff" is not definitive yet. I decided I would blog about the good stuff. Because there has been good stuff and sunshine never seems to get enough attention in the middle of murky waters.



1. The last time I blogged, I was talking about swim lessons and how I was going to miss part of them - yes this was a month ago - but I'm happy to report that Maddy PASSED her swim level!!! WOO!!


She had to make sure she was dressed all fancy when she took this picture. I am truly grateful to my best friend Ana, for not only taking her to swimming but making sure to capture the moment too!


This was such a monumental part of Maddy's summer and watching the progression of her being scared of the water to embracing something new!


She started the swim lessons not even willing to get in the pool, let alone jump in from the side.....to jumping off the diving board!! Yes, she did that one with her floatie but she never did that before! Ever!

2. She learned how to tie her shoes!

This is huge and a very difficult fine motor skill! Thanks to alot of help from her OT, Stephanie and many hours of practice at home...she can now completely tie her shoes on her own. I sometimes forget that she can do this and while it does take her a bit longer than her sisters - she is getting to be a seasoned pro. I find myself wondering what is taking so long when she puts them on and then remember that she is learning and growing and mastering a skill

3. Sleep!

We have made it past the 90 day mark and while her behavior is up and down....her sleep has been consistent. This is a first in her entire life. She does still require a bit of aid in falling asleep - a very low dose of melatonin - she has been consistently sleeping through the night since early spring. This is very new. And yes, we are dealing with all sorts of behavioral changes....we can be happy that she is SLEEPING!!

4. Good Reports

Her eye doctor was very happy with the progression she is making with her lazy eye in her right eye. It is getting better and her vision has not changed much in the 10 months since we visited last. He is always very impressed with her and at this time sees no major concerns for a visual processing disorder. She will take part in a video gaming/autism study this fall.

Her dentist is happy to say the girl remains cavity free and while she has lost only 4 teeth...all are healthy! This summer was the first time that she was able to get dental x-rays done. She could not tolerate it before and they discovered that she is actually missing a molar in the back of her mouth - rare phenomenon but nothing too worrisome.

Dr. MAL is happy with her progress at OT and all the GOOD changes we are seeing. She is maintaining adequate eye contact and can keep conversations going. She is miles from where her future was before ABA....for that we are thankful.


There are things in her diagnosis that we need to rule out. Things that need to be discovered, monitored, tested, and evaluated. I don't want to go into depths of it because I want to know what we are actually dealing with and not what we might be dealing with. That's all I really want to say....because....

because we don't know yet.

We will go down that road and she will be tested, evaluated, and monitored.

Maddy - like any child with a history of spectrum disorder - is different. Unique. I am not ready to deal with more complications but it's only because I'm tired. I will deal with it because that's my job and I LOVE HER. But admittedly, I'm tired.

Maddy has been tested for all but 17 months of her life. And watched. And monitored. And evaluated.

By people who I trust and whom I know care about her.

But it's still tiring.

So....rejoice with me on the GOOD things....i will keep you updated on the other.

Tuesday, July 14, 2015

when mama can't be there.

I'm an emotional mess right now.

Bear with me.

I am preparing to leave for a national conference for a company that I work for. It's a part time job - it was way more full time last year when things were much different. Now it has slid into the part time position because raising my girls, especially Maddy, is a very full time job with not much of time for anything else besides finding my sanity.

I have never been one to get too upset about leaving my kids. I mean, yes, I MISS THEM and I am sad but I have always looked at it as much needed time to help me regroup and be a better mom to them because I had the break.

This time I am a wreck.

Because to Maddy...I am her world. And when I am gone, her world is unpredictable, unsafe, and scary.

Any kid loves predictability but a child on the spectrum CRAVES, NEEDS, WANTS, REQUIRES predictability. It is their main focus and goal of the day - for all to go exactly as planned. If all does NOT go as planned.....well, bad things happen.

Maddy does well with certain curve balls of life. She does better when I am there. She can manage for a day or so...two days....three is pushing it. I am going to be gone for four days. And not only am I gone but she will be moved around alot.

With people I love and trust and who LOVE HER and her quirks beyond measure....

and I know she'll be fine on day one and most of day two but three is going to be tricky and four....well....yeah.

And I don't say this, to build myself up as if I am some kind of SUPER mom. I'm not. (I actually fail quite often and epically at being a good mom. I am human, afterall.) She just prefers me. She has always preferred me in a way that I can't even fully articulate. Even at her worst, she always tried her best to connect with me. Even when she was staring off into the abyss and rocking her body back and forth...she made an effort to connect with me.

Kids usually do fine when the parents are gone. In fact, alot of time their behavior is BETTER when their parents aren't around but it's only true to a point. And missing me is very difficult for Maddy.

For the last two weeks we have been working super hard at swimming lessons. Every day she has marched her little body to the pool's edge and slowly but surely she has accepted the water. From Day 1 to Day 7 - she has been progressing. Swimming in an outdoor pool is a bit of a sensory nightmare and add her limited trunk rotation on her body...it's hard. She's in a class of kids much younger than she is but she's doing it. She is finally doing it!!

Today I had to miss her lesson as I had appointments to do before leaving for the conference. I was gone most of the day and she is used to having me gone for a day but when I came home - she was so overly excited. "MAMA! YOU ARE HOME!!! I LOVE YOU! I LOVE YOU!" as she ran into my arms.

I hugged her back and then asked, "How was swimming today?"

"Oh Mama, I can't swim as well when you aren't there."

"I'm sure you swam fine! Did you have fun?"

"Yes but you weren't there."

I am not going to see everything my kids do. I'm not. I can't. It's impossible.

Friday she finds out if she passes her swimming lesson. The lesson/level that she has been working at for 3 years. The lesson (lesson 1) that most kids find super easy to do. Friday I will be in Nashville.

Missing big milestones for a girl who works SO HARD is exactly that: SO HARD.

I know she'll be fine. She'll make it. I'll make it. We'll both become stronger because of it. But I won't deny how incredibly hard it is. Because we have to work SO HARD to get a WIN. We have to work so hard to have a good day. To reach those milestones. To do those things that no one thought she could do. To do those things that can come so easily to everyone else.

Even missing one is tough.

So pray for me. And for Maddy. And for all those Mamas out there that have to miss those big moments. Pray that we remember that sometimes the biggest milestones are just the ability to be there on the day to day things. Pray that we stay thankful in the achievements that each day brings us.

oh and if you want to pray that Maddy passes level 1 of swimming, you can totally do that too :)

Saturday, April 25, 2015

nothing bitty about it.

So I caved.

I am usually pretty good about telling my kids no. In fact, most of the time they just assume that the answer out of my mouth is going to be no that they get that shocked and excited look on their face when they hear yes.

This past week, Maddy's older sister - Eva - celebrated her birthday early. Eva loves American Girl and this year we happened to be in Minneapolis so we treated her to a trip to the actual AG store and lunch at the Bistro.

Maddy did what every other sibling does and tagged along for the pre-birthday celebration and was pretty jolly about it all. Maddy has an exceptional ability to be happy for her sisters when they get to celebrate things - it is a rare talent as most of us - all of us - struggle with jealousy.

It was a busy day full of change, travel, last minute plan changes and lots of noise. All things that would throw any kid off their behavior and when you add the sensory issues...it is a tough day all around.

After spending many hours in the store as Eva contemplated all of her choices (there were literally hundreds of them, that store is crazy!) Maddy was near meltdown material.

She wanted a Bitty Baby Twin.

Bitty Babies are the newest American Girl thing - geared toward the younger kids - Bitties are not quite as particular as the 8+ age level that most American Girl dolls are.

And boy did she want one. To the point where I knew I needed to get her out of the store. Pronto. She was tired. Overwhelmed and just DONE with everything. I did not want a full out meltdown in the AG store. I didn't want a meltdown period but meltdowns in public quickly escalate to all the other parents looking at your kid and thinking "wow what a freaking brat!"

I could tell that both Eva and twinsie Maelle could sense the impending meltdown too as we were all just agitated. We needed to get out. But I could not let her "win" either.

Somehow the words, "let's go swimming!" left my voice and a trigger switch went off and instant calm came over her face. Swimming. Yes. I had promised swimming. Swimming it is.

We grabbed hands and marched out of the store and I drew in a big breath of relief for diverting a huge meltdown and I batted away tears in my eyes as I knew that there was so much frustration swelling in my girl's body. Not because she wanted something.  Because what she wanted is a sense of calm and peace that I can't give her.

Crisis Diverted.

Only temporarily.

The next morning, she promptly woke up and asked if she could get her Bitty Baby today. Using her money saved and some early birthday money like her older sister - surely the Baby was hers.

We had a busy day planned for Justin's work and she promised to be good. She was.

And as we drove to the Mall of America, to again visit the AG store...I said to Justin what we were both thinking, "she wants a baby doll. Like an actual baby doll. Something so normal. Not a video game or a stuffy from a video game or anything electronically related. She wanted a doll to play along with her sisters. To take care of and love."

This was a such a huge milestone for her.

A baby doll.

How could I say no? Like honestly, we had been praying and searching to find ways for her to branch out of her video game land and play with toys and other kids and mimic life. How could anything be better than a toy that teaches life skills??

So I caved.


Something this big - something like her wanting what every other little girl wants. To watch her care for her baby - Phoebe Coral Robinson - is priceless. It really is.

So don't judge me. My kid has one of those over priced dolls. I guarantee you - she earned every piece of this bitty baby.

Small bitty steps we are taking. Some forward and some backward but God is good and constantly showing us just how much Maddy is amazing.