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.