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.

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.

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 :)

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. 

bye Starfish. hello Palmer.

Maddy has graduated out of the Moro Reflex!

She actually graduated out two weeks ago and I just now realized that I hadn't shared that news with anyone out of the inner most circle.

There are a series of sensory steps and for her to master the first one is always great. I felt like we should have had a mini "good bye" ceremony for Starfish as it had become such an integral part of our everyday life.

Or at least some kind of celebration at the hard work that Maddy had accomplished.

Either way, she has moved on to the Palmer Reflex. The Palmer stems from that wonderful moment when your infant baby grabs your finger with their whole hand and holds on with all their might.

Palmer seen here

The best definition for it is this: 

• Palmer Reflex: The palmer reflex is the automatic flexing of fingers to grab an object and should integrate by six months. If the palmer reflex is retained, a child may have difficulty with fine motor skills, stick out tongue while writing and exhibit messy handwriting.

So now starts the task of integrating Palmer.

This one requires a metronome and some fast fingers. Basically using the hand you write with, you touch your thumb to each finger in sequence while stretching out your fingers between touches. Thumb to pointer - out - thumb to middle - out - thumb to ring - out - thumb to pinkie - out and repeat. To the metronome beat of 60 and up to 120.

Maddy is at 45 right now and so we will work steady to increase her speed. She must do this 2 minutes a day for the next 30 days...

What else is in the mix....

OT is in full swing.

She finished her social skills group - that was a mixed review of positives and negatives

She has a reading tutor that is working with her weekly - she LOVES this!

Overall, just maintaining schedule in the midst of everything. She will wrap up her 1st grade year of homeschooling on May 1 and she is ready for the break.

I am proud of her. She has a long way to go but she is so strong. Such a determined little ball of sunshine.

That makes even the darkest days - just a bit sunnier. 

what I don't want you to know.

"Mama, make it easier for me. Please. Please. Please. Just make my life easier on me."

I hope you never hear those words from your child.

If you do, I pray for you.

I pray for you as you hold your child in your arms and cry helplessly along with them. As you cry to your Heavenly Father, please, please, please, make it easier on her. Not for me. For her.

Any parent of a child with special needs will tell you that you don't quite understand what it is like to raise their child and they hope you never truly do.

Not because it's horrible. Or a burden. Or the worst thing that has ever happened to them.

Because it's not.

It is a blessing. But with such blessings come huge earth breaking changes to your mind, body, soul, and faith. I love Maddy beyond words. I love ALL my girls this way. Despite that, there are huge challenges that come with our special kids.

Some of those are physical challenges. Others are mental. And some are both.

So many parents complain about how anyone out of their inner circle does not understand what it is like to raise a child with needs that are beyond the norm. I get that. I have thought that. I have experienced that. It seems like God whispered to me, 'but you don't want them to truly understand it, do you?'

No. I don't.

Parenting is hard enough.

I don't want you to know what it is like to watch your child slowly slipping away from you. To watch them lose grip of reality. To see them rock and bang their head against the wall in a desperate attempt to calm themselves. To watch them struggle when parts of their body just won't do what the brain wants it to do. To watch them struggle to find the words - ANY WORDS - to communicate how they are feeling. To watch them feel like they will never fit into this world.

I watched Maddy regress when she was a toddler. I also was blessed to watch her emerge back into this world. I see her struggles now and while they are not what they were - they are still struggles. She still cries and screams to adjust to this world.

I know many people don't "get it."

"She looks normal."
"She seems fine."
"You are over-reacting."
"She's just a brat who needs a good slap and she'll be fine."

I have heard them all. I have friends in the spectrum community who have heard those and worse.

April may be Autism Awareness month but in many senses,we don't really want you to know what it is like. Not because we are ashamed. Because the only way you could know what it was like was if you were raising a child with Autism yourself. And while we love our kids beyond measure - we don't wish autism on anyone.

I don't want you to know.

What I do want - is for you to be understanding.

I want acceptance and love. To trust that as parents we really do know our kids and we are doing the best we can for them. It might not look the way that you think it should look but trust us. Please, trust us. We have been to every doctor under the sun and moon and back again for our kids. Trust that when my child has a meltdown - she's not a brat. She is reacting to 1 million things beyond anything that we can ever be aware of. Trust that when she looks you in the eye and says "hello!" that came from HOURS of therapy and hard work and not just something she finally "grew into" - that when you suggest a treatment route that we are appreciative of your thoughts and conviction but we may not go down that road or we already tried it.

To love us when you ask how to help, we can look into your eyes and say with all honesty "I don't even know." and that is okay. That isn't a sign of weakness or bad parenting but honest humanity.

I don't have all the answers.

But I take responsibility for myself as being the BEST advocate that Maddy can ever have. I know her better than anyone else walking this earth. It's my job and I expect nothing less from myself. I'm gonna fall, screw up, have a meltdown, be grouchy, moody, emotional, and scatterbrained. But I am doing the VERY best job that I can do.

I don't want you to know what that is like.

I just want you to accept me and love me.

One of my best friends has a child with a terminal illness. I have no idea what it is like to raise him. To love him. To watch his struggle from his mother's eyes. And she would say to me, "I hope you never know."

Many times we find ourselves just nodding and saying, "I know...but I don't know."

Pray for us parents....and love us. Love our kids. That's all we ask for.

burden of the brain.

All of Maddy's therapy is either starting or set up to start soon. The reality of our new reality is hitting me harder than I would like to admit.

I feel like I am drowning.

I feel like suddenly I am required to do 10,000 tasks in 10 minutes. So many things that need to be done. So many things that demand my attention.

Only I am one little person.

One small person struggling in an ocean of doubt and fear.

I have been down this road before. But yet, I have not. Everything is different now.

Everything.

The places may be the same but Maddy is different. Dare I say that taking a two year old to therapy is easy?! But in some ways it is. Physically it is not. It's exhausting but mentally, it's not earth shattering. You strap her in the car seat, carry her to the room, listen to a tantrum maybe and on your merry way. Now....she is six going on seventeen. She has questions. Thoughts. Opinions. Demands. Requirements. Requests. Negotiation. The WHY. Physically she is easy but mentally - good night. My brain is done.

Why do I need to go back to this stuff? What is wrong with me? Why can't I do what everyone else does? Is it because I am dumb? Am I weird? Am I stupid?

No matter how hard I can completely reject her fears of being different or less than - she is old enough to know that her sisters don't have to do this stuff and no matter how hard I try to gloss over THE WHY...I know her brain is smarter than that. No, honey, you are not less than - some people just struggle with some things and others don't. God made you and He made you awesome. Sometimes you just have to work a bit harder than other kids but it will always be worth it.

Insert the groan.

Or the eye roll.

Truth. She has all the makings of a teenager in a six year old body.

It's hard. I'm not going to lie. I'm not going to complain. I am going to be honest. Brutally honest. Regardless of how "severe" of a problem it is, it's still a problem. You still have to look into her deep brown eyes and convince her that she is amazing. The world is going to keep telling her that she is not but you have to get in there and INSTILL in her that God made her amazing. How do I teach her to be amazing when I feel that I am not? That's the brutal truth right there. I have struggled - my entire life - with feeling like I was never good enough for anyone. Ever.

When you get past the physical and sensory issues that she struggles with....then you get to social norms. Social norms for an introvert like me is a nightmare. I hate small talk. I do. Sorry. I still like you, but I begrudgingly will only talk about the weather so long before I decide I was better off staying home.

How do I teach my daughter the proper ways of the social world when I hate them?

I have such lovely people asking me how they can help me. I have no clue. I really don't. Like the question gets asked and I feel instant Doe in headlight look on my face. All thoughts have left my head and I have nothing. Like - Nothing.

I don't know.

I don't even really have a clue how I am going to survive the next five minutes. The triage in my brain has mastered the day down to a series of essential for survival tasks but after that?? After that, I have lists miles long that either involve reading huge books about sensory processing disorder, or finally getting to the laundry that has been piling up for 2 weeks, or figuring out a way to fix my stupid dishwasher that will only wash the bottom half of the dishes because I have managed to break that somehow, or remembering that Maelle needs help practicing her piano, or Eva has yet to hear anything encouraging out of me today, or when was the last time I cleaned the litter box, and did I write any of the 20 thank you cards that I was supposed to write and what the heck did I need to buy at Target so we have food to eat and did I pay any bills this month and when will Justin be gone again this week and Maddy needs to do starfish again and when did she shower last...wait, when did I shower last?......

And then I feel the Spirit of the Lord say to me...sssssshhhhhhhhh....

I have to rest in that Holy shushing.

I know in my heart that He has got this.

Someone tell my brain that.

"I will not cause pain without allowing something new to be born." Isaiah 66:9

stop. just stop.

Nearly all of 2015 has been a testing phase for Maddy. Almost every thing we have done with her has involved testing of some sort.

It is a necessary evil.

I know this.

But can I just pause for a second and plead this: "Will someone please take a second and praise my daughter for what she CAN do?"

I feel like I have been going for 2 months strong now being told what she cannot do. Where she falls short. Where she isn't stacking up to her peers. Where she is lacking.

What about what she can do??

I am so tired. So tired. To see my amazing miracle of a child being looked at as less than.

I have all the lists of what we NEED to do. What we should incorporate in our new daily life. But can we take a breath and say 'hey - she scored ABOVE normal in her core language skills! Hey - she has an incredible expressive vocabulary!"

No one likes to hear all day what they can't do. Why would they ever try if all they hear is can't?

Can I NOT be the only person saying, 'her story is incredible. Incredible! She is an amazing kid. She is funny, loving, expresses her feelings, is compassionate and helpful. Have you seen her problem solve a video game? It is extraordinary! Have you looked into her brown eyes and felt a hug from her arms? You will melt!"

I'm tired. It's late. I feel defeated. 

ready, set, go.

We are in the last week of our old normal.

Next week Maddy starts therapy beyond what we have been doing at home.

And if I must, let me digress for a moment and say that the at-home sensory therapy seems to be helping. She is mastering her Moro Reflex "Starfish" movements and I can honestly tell a difference when she has been consistent with her Starfish and when she has not.

I know. It sounds nuts.

How does moving like a starfish for a few moments reconnect the brain and help her manage her emotions, mood swings, frustration and improve reading skills?

I honestly don't know. But it does.

She is reconnecting parts of her brain. God has made our bodies crazy amazing.

When we finally get scheduled with OT - I am sure she will get a new movement. She will be excited and resistant at first but Starfish has become a very important part of our day.

Say what you will about Yoga or Stretching activities - call it what you want, but as long as your heart is set on Jesus, it's not evil or pagan. It's just movement. I can praise God for the glorious ways he has made our bodies and I shouldn't be surprised that stretching and meditating on the Lord will help you rewire your brain. It sure helps rewire your heart. 

Dr. MAL agreed that most of what we are dealing with is sensory - she sent us home with the Vineland (diagnostic tool for ASD) to fill out and send back (ooops...better get on that!) and we will go back to her in May.

Maddy saw Jen in Speech last Thursday. It went well enough. Maddy is definitely vocal. She expressed her opinions to the point where I literally wanted to take her out of the testing and correct her sassy responses to the testing that she found beyond boring. (UGH< IS THIS OVER YET?)

We are awaiting test scores to see if she will need speech services but she did get signed up for a Social Skills Group that starts next Thursday. 1 hour long peer group with other kids with various needs in the social skill department. I hope she likes it. She needs help in this area.

It will be a weekly group so that will be trip 1 to the city and when we get OT scheduled that will make trip 2 to the city for the week.

I am not complaining. I will, always, do whatever is necessary to give Maddy the skills and tools she needs in life to - not just be successful - but to be happy.

That is about all I can update. Some days are great and others are awful. Such is life with kids, yes, I know.

I have to just reflect upon how drastically different and unimaginably beautiful Maddy has made my life. 

She sees the world beyond normal and when I catch a glimmer of how she sees it - it sure looks different. Sometimes beautiful and sometimes ugly. We have work to do. All of us. Maddy doesn't just go into therapy. We all do.

the moro of it all.

I don't usually - or haven't before - came to this blog with an I don't want to attitude.

Typically, blogging has been a release for me. A time to let all those thoughts out and just purge my soul of what I want to say but just couldn't quite do it with my speech.

Lately, I feel so defeated when I sit down at my computer and open up blogger.

Everyone likes a champion.

Everyone likes a story of someone who has defeated the odds and WON!

No one likes when the champion has to return to the fight and the odds are stacked against them again.

That's probably why sequels tend to tank when it comes to movie productions...but i digress...

I felt very much like a defeated champion on Thursday.

We had to return to Rehab Therapy after a 3 year reprieve.

We had to return to a place that I hoped I would never ever have to return to.

All Wednesday night, I was a mess thinking about having to walk that hall...go down the elevator and return to a place that harbored so many hard times - even with the good outcome.

Thursday morning came and instead of worrying about how I would feel when we returned to that place, I had to deal with the reality of life. My car broke down. And I scrambled to find a replacement to get her to her appointment. We walked 3 blocks in -40 windchill to find the replacement and get on the road again.

I wanted to give in and just go home. It was not an option. She needed to be at this appointment and I was going to get her there. The weather was cold. The roads were icy.

We arrived 15 minutes late and we rushed through that hall, hurried in the elevator and into the appointment.

I didn't have time for the dramatic re-entrance.

We spent over 2 hours at that appointment learning and testing Maddy.

As I talked with Stephanie, as I listed out all the sensory concerns and issues that we were dealing with, they seemed to pile upon each other like Mary Poppins unpacking her suitcase. How did they all fit in that tiny little package?

Stephanie was great, as always, and made notes while simultaneously testing Maddy's OT skills. When I finished, I could physically feel my stomach sink.

How did we get here?

An image popped into my mind.

A sunny sky was over us as we unloaded everyone on to the beach for a warm day in the sand and the water. Maddy found her way to the shore and we watched as she played in the low tide. Splashing and having fun. The mother in me worried a bit because she can not swim, but I relaxed as the water was low and there was no concern. Flash forward to minutes later, the tide rolls in and she is neck deep in the water, thrashing for help and she is miles from the shore.

How did she get so deep so quick? Where have I been?

The mother in me is furious with myself. How could I possibly have watched her become so distracted with the sensory world that it got this bad? What have I been doing all this time?

Many different tests later and Maddy was allowed to go play for a bit in the ball pit. I focused on everything that Stephanie was trying to tell me. She failed the sensory tests...all of them. We will have to go back to square one.

The Moro Reflex

I invite you to read this article about what the Moro Reflex is.

We need to start back at the basics. She clearly has an un-integrated Moro Reflex. So she is learning a technique called "Starfish" that she repeats 3 times a day for 30 days to help integrate her Moro Reflex again.

Here is a youtube video of what Starfish is.

I'm still trying to wrap my mind around it all and that is why I am redirecting you to other articles. I don't know why I can't seem to explain it in a clear manner...but i can't - so please read/watch those.

Meanwhile...

We go back to see Dr. MAL tomorrow.

We go for speech evals and more OT information in 2 weeks.

We are hoping to meet with the hospital social worker as well...we have no services anymore because Maddy has aged out of everything.

So not only are we having to reintegrate back into the world of therapy - we also need to rebegin our lifestyle of trailblazers.

I am not, at this time, going to go into details about services and costs as I don't have all the information yet. What I am familiar with, Maddy has aged out of....

What I do know is that her diagnosis is changing and it's heart breaking.

And isolating.

I really just want my happy Maddy back. She is not happy these days and that is the most heart breaking part of it. Anyone who knows Maddy can describe her as "happy" and when we first lost her - we lost the happy....and to see the happy disappearing makes it disheartening.

A dear friend called me today to say that "you didn't miss anything! We haven't noticed huge changes either until recently...so don't take responsibility for something that wasn't there. You didn't miss anything. You jumped to alert the minute things did seem different."

That means alot. As a mother...I feel like I need to carry the 100% burden of missing things. It is an impossible task. I am exceptionally hard on myself. I don't want to fail her - or any of my kids. I want her to not just survive life but to LOVE it. The good, the bad, the hard, the easy, ALL of it. To experience it. And be joyous that she has a Savior who loves her and will someday call her home. And to see the smile fade from her face and the happy laughter to leave her lungs makes me sick. To see her in tears and frowns destroys me. No - not all kids will be happy 99% of the time. But Maddy usually pulled a solid 95%....this is so not her.

I just want her. Nothing less.

that one entry where i go off on a tangent because i am frustrated.

I have been putting off writing this entry for nearly a week.

Because I don't have anything nice to say about Friday's appointment.

And I want to follow that old adage that goes "If you don't have anything nice to say, don't say anything at all." I was raised on that proverb.

Yet, I want to say something.

So I guess, I will go with this. There is still this huge misconception in the world that doctors no longer treat people or families with autism like they used to. That the old days of "your son/daughter will never (fill in the blank)....." are gone.

They are not.

Those doctors still exist. And I say "those doctors" because this doctor referred to Maddy as one of "those kids" (with autism) not once, twice but multiple times at the appointment.

"Those kids" can have normal EEG results. No one really knows why "these kids" think they way they do or why "they" have more headaches or stare off more.

And it bothered me. It bothered me so bad I wanted to scream.

She isn't one of "THOSE KIDS." She is MY KID and her name is MADDY.

He painted a very bleak - there's nothing i can do for you so I don't know why you are wasting my time - picture and sent us out the door. He does not believe she is having silent seizures. She had a chromosomal blood draw for a test that he basically said meant nothing 95% of the time but we did it anyway. That 5% means something to us.

I have absolutely nothing nice to say to that man. I hope I never see him again.

There is absolutely no reason to treat anyone like that.

I feel for every parent out there today who learns that their child has autism. I pray they don't encounter the types of medical and psychological professionals that tell them "they don't know why these kids have autism nor is there really anything you can do for them". I have seen with my own eyes, the hope and the joy and the reality that treatment can do. My child when from not speaking to full sentences and eye contact. Recovery/Remission does happen.

I don't care about why or how she got it. She has it. So let's move forward from that. There is no time for why. There is no point for why. There it is.

Yes, we need to discover as a society why and how autism occurs but for all of us IN it - it doesn't matter now. All that matters is how to HELP them.

So what happens now?

That's what has been buzzing around both Justin's and my own head. She is going to OT tomorrow - and despite recommendations to see a new OT person, we are going with what we know. The new place had a horrible time getting back to us with scheduling that I got annoyed and gave up. We'll go with where we were and see what they say. She will go for her speech evaluation at the end of the month.

We go back to Dr. MAL on Monday.

I am frustrated and annoyed with how difficult it is for a parent who actually WANTS to help her child. Imagine the kids of the parents who don't put in the effort. Because "those people" exist too.

You have to be so careful when you group people. You have to be extremely careful when you talk about autism. The spectrum is vast and every kid on the spectrum is unique just like every one of us is unique. I don't like calling Maddy "autistic" because it does not define her. She HAS autism - she isn't autism. She can only represent herself and her life on the spectrum. Is she one of "those kids"? No. She is Maddy and she has a mild form of what is turning out to be Asperger's Syndrome after being in remission for Autism Spectrum Disorder. Just like Eva isn't one of "those neurologically normal functioning kids"  - she is Eva and she has been healthy all her life.

Am I being hyper sensitive? yes.

I don't care.

You can't be an advocate if you don't love the individuality that you advocate. 

the middle of Oz

I will admit that I was naive to think that Maddy's journey through autism was over. I honestly can tell you that I thought we were done. These past four months has taught me that her "autism story" is not over.

That many times when we/she is faced with new challenges, the reality is that it won't ever be truly over. Not as much as I would hope it would be.

It made me realize, we are just starting a new chapter in it. It is a journey and not necessarily a destination. This new chapter of her life is just that - new. And like most new things, we are scared of it. Resistant to change. 

We are deep in the investigative part of the story. A new plot twist has arose and now we must use our detective skills to figure out how best to help the heroin conquer her foe. 

This time it will take us to the neurologist. (Cue in ~the infamous Wizard of Oz ~ and Mayo being the Emerald City). This "Wizard of Oz" travels though...so there is a plus. Because going to a pediatric neurologist is kind of scary like going to see the Wiz. Exciting and yet terrifying. All the things you may find out. All the new questions you may discover. All the unknowns.

And like Oz...there is so much build up to see one guy. Waiting lists, medical forms, anticipation. But he is just one guy. And I need to stop raising the bar of expectation. Not to sound negative but to be real. 

I always get nervous taking Maddy to someone new. The autism world is tricky and there are SO many views on treating autism because the spectrum is SO VAST. The trick is to find one who agrees with your method of thought and your child...because there are an infamous variety - from avoiding GMOs to music to dolphins to hugging to ABA...they are all over the board.  

So on Friday we are off to the see the neurologist (cue in: "We're Off To See the Wizard") in hopes of some new perspective of the brain of Maddy. Prayers appreciated. Updates will follow.

We have faith that this middle of the story will be full of the Lord's powerful work just as much as the beginning was.

"But the Lord stood at my side and He gave me strength" 2 Timothy 4:17a

onward....no...wait.

Living where we live means waiting for things.

Sometimes this is a good thing and other times it is not.

There is only one pediatric neurologist that comes to our hospital (our is a loose reference since we have to drive 100 miles to "our" hospital). He drives up twice a month from the Mayo clinic in Rochester, MN to see his patients up here. The hospital put us on a wait list to see him February 5th but being 4th on the list means....it is highly unlikely that anyone will give up their spot.

They scheduled us for March 26.

I don't take waiting very lightly. And the idea of waiting 2 months to have an EEG to see if anything going on with Maddy can be helped in other ways than behavioral modification was not going to work with me. When you are trying to rule out the "unknowns" - waiting 2 months is not helpful.

We called back, called around and got moved to February 24th at the Mayo Clinic. Yes, that means driving 7+ hours for appointments that may only be minutes. This surprised the hospital schedulers...

That doesn't matter. I will drive how ever many hours that I need to in order to either get answers,  rule out or factor in other possibilities.

So we are scheduled to see the neurologist late February. Back to Dr. MAL in early February and we are still waiting on places to call us back about her speech and OT assessments...which doesn't impress me. I will call again tomorrow and if I don't get a response, we will go somewhere else.

Waiting doesn't sit well with me.

I have never been a patient person.

Daily struggles continue....and all I can do is carry on and TRUST that the Lord has this all under control.

realities.

Many kids, who are lucky enough to go through ABA and have incredible results and reach Remission or Recovery - get to stay there.

Some kids do not.

Because autism is an individualized disease. It is not neatly wrapped up in a series of words, expectations, explanations, or categories.

Because people are not that easy to compartmentalize.

I am going to admit that my worst fear has snuck its way back into reality.

Autism is sneaky.

My gut knew we needed to see Dr. MAL to confirm what I was suspecting but my brain wanted to convince my gut that I was paranoid. That I was so focused on her development that I could find a way to make her seem worse (for lack of better word) than she really was.

And my gut was right.

So my brain is reeling.

You see, the brain is constantly growing. Constantly changing. Constantly adapting to life. It should not simply stop when we reach certain milestones. It needs to keep working. Sometimes the brain can adapt and grow all on its own and sometimes it cannot.

Maddy is struggling to adapt to the changes that naturally occur in the brain at the age of 6-7....and there is a reason why most studies say that ABA is MOST effective before the age of 7....so MUCH needs to be accomplished.

Now it isn't full blown scary regression or anything like that. I know we are not that far in it. But there are obvious signs that she is having sensory issues, social issues and communication issues. And she has become very Aspergers-ish when it comes to obsessions. (Mario)

Dr. MAL wants to rule out Absence Seizures as well  so we are in contact with Maddy's Pediatrician (Dr. S) as well. (Absence seizures are short periods of "blanking out" or staring into space and like other kinds of seizures, they are caused by abnormal activity in a person's brain.)

We will go back to Speech and OT to get evaluations as well. Clearly there are things going on and we want to know the best ways to address everything before we can make a clear action plan.

But the reality is: there needs to be an action plan.

To be honest. it hurts. You never want to see your child suffer and many people don't understand what kind of "suffering" a child with autism has. Simply put: if you were unable to communicate with ANYONE on how you were feeling, your thoughts on life, your general NEEDS, or just have a very simple connection with another human being - would you not think of that as suffrage?

To be surrounded by a world who you didn't understand and couldn't understand you.

To want to have peers who connected with you. But can't make those relationships because your brain just doesn't' communicate like everyone else's?

Everyone has had a time (or several times) in their life where they felt left out, alone, misunderstood. Everyone has had a moment where they were made fun of or not included. Everyone has gone home to their mother at least ONCE in their life, with tears in their eyes saying "Why don't they like me?"

Imagine a life of perpetual "what is wrong with me"?

As a mother, I want to protect my child and I want my child to soar. To teach them all I know and help them accomplish what they love and dream about.

I will never stop fighting for Maddy.

The thought is daunting. The reality is terrifying.

She is worth every bit of it.

To say I'm tired already would be an understatement.

But I have to remain ever thankful for the time and the development she has had. That she can communicate with me - even if I can't quite understand everything - even if it comes after an angry outburst. That I had 4 years of relatively good times.

So now we go back into the trenches. So much is unknown. One thing I do know, God is with us. He has the plan. and HE will prevail.

As our verse has always said: "I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7

the fine line.

I know that I have blogged about this before.

I just can't get it off my mind.

And it's not a pity thing.

I think it's just an ever constant reminder. For myself and for those around me.

Things are never as easy as they seem. Nor are they ever what exactly they appear to be.

My daughter has autism. Yes, she has what is called Autistic Disorder: Remission (residual state). People assume this means she is *snap your fingers* back to "normal functioning" and that is just not the reality.

The reality is not that at all.

What it means that 4 years ago she had a moderately severe form of autism where she did not speak, she did not function, she did not at all possess any of the mannerisms of a 2  year old child. Some age levels placed her at 6 months old.

What it means is that a team of us worked very hard to get her to the Remission status that she is now.

It does NOT mean she isn't without her quirks and tendencies. It does NOT mean she does not still have meltdowns. Or have auditory sensory issues. Or think with a very literal brain. Or have a social disadvantage.

If you compare then and now: you will see stark and very drastic differences. You will.

And if someone would have told me then what life would be like now, I wouldn't have believed them.

I know this.

It does not, however, make the regressions, the aggressions, the meltdowns, the communications deficits, the social awkwardness any easier.

We are well beyond her normal length of regression time. And I could argue that the inconsistency of the holidays (Christmas and New Years) probably added to it.

However, her behavior is: not okay.

I am worn down. I am in tears most days. I am feeling very defeated in how to help my girl.

We will be calling Dr. MAL and will see what she advises or finds. Until then, we will be on strict schedule mode. What does this mean? It means that every second of our day will be planned, arranged and scheduled. Bedtime cannot budge. We cannot be spontaneous. We must make the day as clearly defined as possible. It is really the only thing that helps Maddy improve and to be honest, I hate it. I am not a "scheduled" person. I just am not. But if I must be, I must.

People don't get it. I know that. It's OK. I wouldn't get it either before I had her. And the worst part is, how completely and utterly isolating it is.

I'm sure people assume I am self absorbed. And really - the REALITY - I have to be "Maddy absorbed" - for her to work out of this - she has to be 100% completely managed. Yes, I said managed. It sounds awful but it is the best way to describe life with a child with autism - regression, remission, or severally affected - and as much as I want her little creative wings to fly....right now they would crash her into a tree.

So I return to Psalm 46 on my knees and in tears for my heart weeps for my girl.
 "God is our refuge and strength, a very present help in trouble. Therefore, we will not fear, though the earth should change and though the mountains slip into the heart of the sea; Though its waters roar and foam, though the mountains quake at its swelling pride. Selah."