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.


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 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'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 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. 

Monday, April 13, 2015

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. 

Tuesday, April 7, 2015

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.

Tuesday, March 17, 2015

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.


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