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. 

Concerning, Part 2.

 

  Well, lots has been going on here.  Mostly me trying to stay sane while constantly feeling like I’m about to go into labor.  Is this a baby #3 phenomena?  I’m not sure, but she has to stay put for at least another week, because if I go before 37 weeks we won’t be able to have the perfectly perfect home birth that I have in my mind.  And we all know that labor and birth are always supposed to be perfectly perfect. 

Ha.

 

Mostly what’s been going on (in between passing around fevers between children – none of which Bella has caught, hallelujah.) is some major processing regarding all the concerns we’ve had with Tootaw.

 

 

We have been in the process of getting her assessed for a couple months now, still with no real assessment.  We have the real thing scheduled for December 14th.  In the meantime I asked the caseworker if she could try to have a heart to heart with Mom about anything that may have happened prenatally that could be contributing to the issues we’re seeing.

The caseworker on this case has actually done a stellar job of listening to our concerns and treating our opinion as if it has more weight than a good joke (aka: sometimes we don’t feel like just the foster parents!  It’s amazing!).  Because she’s awesome in this way, she agreed to talk to Mom.

 

 

What we found out was not really surprising to us, but did confirm some of our fears regarding the challenges we’re having with Tootaw.  Amid other information, we found out that she was born at 24 weeks gestation.  Ummmm…holy cow.  I don’t even know how she is alive, especially considering they live in a teeny tiny town in the middle of nowhere.

In addition to that, we found out that Mom drank the entire pregnancy, and binged on hard alcohol frequently.

Minor details.

 

 

Essentially from the people we’ve talked to thus far, we can pretty much be sure that fetal alcohol syndrome, or one of it’s close counter parts, is our culprit.  Of course, thanks to our favorite Dr. Purvis (and other people who are not nearly as helpful as K Purv) we know that just being born at 24 weeks could also be a major contributing factor to many of the issues, especially the concerns we have with sensory processing.

 

Partly we are heartbroken.  For what this could mean for Tootaw’s future, for the struggles she will face, for the uphill battle.

Partly we are so thankful that we are discovering all of this when she is only three.

To be honest, partly I’m a little relieved, as I felt I was starting to go a little crazy.  We were seeing all of these concerns, and there were more than a few people who seemed to be trying to make them no big deal – like we were making something of nothing.  No, no.  This is something.

 

 

I don’t share any of this to overshare – namely to give information about our sweet girl that may be on the private side of what I normally like to share.

I share this because I know that there are lots of other foster parents who are confronting some of the same issues, some of the same heartbreak, some of the same frustration – and I’m sure are feeling a little lonely in the process.

I also share this because, well, we’re feeling a little lonely in the process.  There’s not anyone saying, “Ok, now this is the next step.”  We are having to figure it out on our own.

To get a formal diagnosis or not?

Psychiatrist, psychologist, geneticist?

Where are all of these beloved services we’ve been told about?

What assessments are even worth doing?

How can we start parenting differently that is actually effective, beyond what we already know about therapeutic parenting?

 

You get the idea.  I’ve been e-mailing and facebooking all our friends I can think of that can help.  And they have.

 

So, anyway, I thought I’d blog about our process, even though it seems dauntingly long at this point.  And also ask you all for your thoughts, tips, etc.

 

And also for your prayers.  Because we know that only the one who created the brain knows how to truly heal it, and that in all of this, he created our sweet girl with purpose, passion, a plan, and absolutely wonderfully.