SPD, FAS, and more!

 

Well, I’m still working on a post from Disney.  That’s a lot of pixelating.

In the mean time, I’m not sure I ever posted an update on Tootaw’s assessment and services.

In her assessment with the school district, they essentially decided that she had global delays.  They decided to send the early childhood special education teacher out to our house twice a week.   Initially I thought, wow, they see the same things that I do and we’re actually getting services!

After two months of them coming out I’m thinking, wow, I hope I can get out of this in the fall!

Mostly they’re doing some interactive play with her – but it’s nothing that we don’t already do at home on a regular basis.  I’m not seeing the benefit.  I think that in general, they’re a little off target on what the real issues are.

After a lot more research, most of what Tootaw displays looks like sensory processing disorder.  I don’t know if it is just straight up sensory processing, if it is the fetal alcohol syndrome displaying that way, or both, but either way, we address it in the same way. 

We also have cognitive hurdles to jump and a lot of retention issues still, which I can only assume is part of the FAS.

I think we’re going to go forward with getting an assessment done by a child development team at the university hospital close by.  They have a specialized team that I think will be more helpful in possibly getting some occupational therapy that is better aimed at the issues at hand.  The only thing that makes me a little nervous about this route, is that it’s possible it will require a diagnosis for services. 

There is not a question in my mind that she has sensory processing disorder.  We’ve been told as much by three different professionals that she has FAS (without a formal diagnosis).  I’m just not sure I want a formal diagnosis.  What if we can overcome most of this and she can move forward without ever remembering?  What if we can get to a point where it doesn’t matter that she or anyone else knows about these issues?  If we can, I don’t want a diagnosis following her forever, or her feeling like a diagnosis is at all who she is.

So, we’ll see.  If I think they’re going to have to do a formal diagnosis, I may back off.  Or maybe not. 

Through a training that we’re in the middle of (more on that later), we have learned a lot about sensory processing disorder, and I actually feel pretty empowered to work with it at home.  But, I’d feel better if I had someone outside of us deciphering if she’s making progress.

Speaking of progress, though, she has made quite a bit.  We’ve seen lots of changes, even in cognition, in just the last few months.  That gives us so much hope.

I think that when it comes to schooling, we’ll have some difficulty.  I’ve actually decided to homeschool (more on that later too.), and this is one of the big reasons.  I can go at her pace, repeat things as needed, and she can be upside down while I’m teaching her if she wants to be.  I think otherwise school would just frustrate her, and I don’t want that. 

Anyway, that’s a very short and somewhat jumbled summation of what is going on in that arena.  I know that there were a few of you who were interested in the route we were taking for getting her needs addressed because you see some of the same needs in your kids, so I wanted to do an update. 

We’ll just keep at it. 

One strand at a time.

 

 

Two years ago today we got a phone call.

There was a little girl, three years old, very sick, and in need of a home.  God softened our hearts.

“Can you take her?” 

“Of course.”

A thread passed through the loom and was pressed in tight as to never come unraveled.  A thread of a different color.  A thread of unknown origin.  A thread of anxious preparation, unknown challenge.  What would it look like in our tapestry?

We went and picked her up at the hospital, so sad, so scared.

We didn’t think that she could stay.  Not what we had planned for, not what we had been told.  What if it wasn’t good for our family?  But God made a way, he provided, and she stayed.

Another thread passed through the loom and was pressed in tight.  A thread of trust, a thread of faith, a thread of change.

 

We went through treatment after treatment.  ER trips.  Scary illness.  Improved blood counts. Healing.  Healing.

We went through visits.  Up and down.  Back and forth.  Trauma after trauma.

We went through vomit.  Refusal to eat.  Eating challenges and, well, not eating challenges.

Painful bedtimes.  Trauma tantrums.  Disregulation.  Hating us.  Loving us.  Confusion.

Whump.  Whump.  Whump.  Thread after thread pressed tight into the weaving.  Different colors. Some light, some dark.  Some thick and hard to weave in.  Some silky and soft.

 

Finally trust.  Finally attachment.  Finally smiles.  Finally food.

Joined by her sister. 

Threads of sparkling beauty added to The Artist’s creation.

Final goodbyes.  Painful last experiences.  Ties damaged, but hopefully not broken.

Threads woven with blistered fingers.

 

What was it that The Artist was doing?  As we watched one thread woven through at a time we couldn’t tell.  Sometimes it seemed like things would turn out ugly. 

Sometimes our ideas of what our tapestry would look like were stretched. 

Sometimes we couldn’t see past the thread being woven to remember who was weaving.

 

But now.  Now looking back.  Look at the beauty.  Look how they all fit together.  A story told to be retold, revealing the beauty that The Artist had in mind.  It is gorgeous.  Not without it’s pulls in the thread.  Not without sweat and tears staining the weaving.  But all for the glory of the Artist.

Faith that He knew what he was doing.  That he had a plan for how all the threads would look together.  Looking back over the last two years I wouldn’t change a single thing. 

 

And look now.

 

 

It’s beautiful.

And we’re not done yet.

Thank you Jesus for weaving things in that we would have never considered.

 

I love you Bella.  My Bella.  My daughter.  Forever.  Happy two years.

Daddy-Daughter Dates.

 

 

  My hubby takes our girls out on dates regularly.  He does one date night per week, and we rotate between the girls.  They LOVE IT.  We did father’s day presents where the girls had to answer questions about their Daddy.  Three quarters of the questions were answered with, “Going on dates.”.

What’s your favorite thing about your daddy?

Going on Dates.

What’s Daddy’s favorite thing to do with you?

Go on Dates.

If you could do anything with your Daddy, what would it be?

Go on a date to…

  They build lots of special memories while he’s winning their hearts.  Meanwhile they are learning how guys should treat them, show them respect, and love them.

 

  The day of their date, Brian calls them in the afternoon to ask them to go on a date with them.  And he always tells them to ask my permission – just in case the answer is no. ;)  As soon as they hear that someone is on the phone for one of them, they all get excited.  “You get to go on a date tonight!  Daddy’s on the phone!”  It’s adorable.

  Anyway, I wanted to post some pictures of date nights recently so that we can keep them in the memory bank. 

Naomi just turned two in April.  Two is the magic age where you get to start going on dates, so she recently had her first.

Out to dinner.

And to the pool.

She was very proud that she got to go on a date.  She kept telling me, “I go on date with Daddy!  We go pool!”

 

Sylvia’s most recent date was a picnic at the park and going on a flower walk.

 

 

 

 

 

 

And ice cream…

 

Bella’s most recent was going to a ceramics studio and getting to paint her own piggy bank and then going to dinner with Daddy. 

 

 

 

  Tootaw’s up next and I’ll post her pictures then.

 

I love my husband.  They love their Daddy.