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.