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. 

Everything Case Related.

 

 

  So I haven’t kept up with things at all here lately – although not due to laziness, that’s for sure.  Somewhere in the recesses of my mind I had pictured having Vida and then getting to avoid dealing with case-related stuff while I soaked up my family of seven.

  But caseworkers kept calling.  Therapists kept scheduling.  Visits kept happening.  Lots has happened.

 

  Regarding the upcoming termination trial – I am now sure that we (everyone excepting Mom’s attorney) are all on the same page as far as what needs to happen at this trial.  The girls need permanency, and at this point if you asked Bella where she wanted to be, it would be here.  Mom has made very little progress (very.) and with us going on two years in this case we need to find an end.

 

  The Make a Wish foundation came out and visited with us (!!) and Bella made her wish.  Sometime at the end of April or the beginning of May we will all be going to Disney World to have a meal with the princesses in their castle.  We will be there for 6 nights and 7 days, during which time we will try not to lose any of our five very small children.  I can’t tell you how excited I am for this.  I was so frustrated that it took so long for Make a Wish to process Bella’s case (due to the red tape with her being in foster care), but the timing could not be more perfect because:

 

  MARCH 22 IS THE END OF CANCER TREATMENT!!!  As of March 22 we will not have any more chemo, no more lumbar punctures, no more steroids, no more administering 8-10 meds at a time, no more holding our breath while waiting for her ANC levels to come back.  No. More.  So, along with it being shortly after the termination hearing, the trip will also land very shortly after the end of treatment.  So, our meal with the princesses will be one big party – thanking God that our sweet girl is healed, that we can all move past cancer and give it the big boot out of our lives.  AMEN.

 

  Unfortunately, amid all of this good news we’ve had some ups and downs with the girls.  They have continued to have one hour supervised visits with their mom – during which she made some very irresponsible promises.  i.e. promises about them going home forever.  This is not going to happen under any reasonable circumstances, and it completely stressed Bella out.  She was completely dis-regulated most of Christmas.  After the baby came it was completely stressing me out because she wasn’t acting like herself at all.  After her mom made these promises, her food issues began to surface again.  Refusal to eat, puking a couple times a day, coming home with a full lunch box.

  Our friend who drives Bella to school even mentioned that she noticed how stressed out Bella had been, and that then the day after the visit she was completely back to normal.  The visit, I should add, that she missed because she vomited all over the transporter’s car.  I felt so. bad. for him.  He should get a raise.  The next day our friend who drives her to school asked her how her visit went and she answered triumphantly, “I didn’t have to go because I threw up!”  Children should not have to vomit to make themselves heard.  That’s all I have to say.  And they’ve continued visits.  Luckily we’ve been able to deal with the food issues some, and keep most of the puking at bay – but there is still refusal to eat anytime she knows there is a visit approaching.  This week there was no visit – and there have been absolutely no food issues.

 

    We had Tootaw’s assessment shortly before Christmas (wow, I am really behind, huh?) and it confirmed most of what we were seeing.  Essentially they said, yeah, you’re totally right, we see these things too.  To which I said, “Wheeew”.  Because otherwise I might have thought I was losing it.  At the end of the initial assessment they had a few options: Not to have any further assessment at all, to have her further assessed in one or two areas, or to have a global assessment done of all areas.  They recommended the global assessment.  We have three appointments coming up where they will assess her in our home, through play therapy at their office, and then an appointment to tell us what all she qualifies for.  At that time, whoever she qualifies to work with (occupational therapist, language therapist, etc.) will begin coming to our home to work with her.  I think they will likely also recommend that she go into the early childhood special education pre-school as of next fall.

 

  In the midst of all of this, we have switched caseworkers…..again…..which hopefully won’t be too detrimental to the termination trial.

 

  I think (?) that’s most of what’s been going on as far as the girls case goes.  How has all of this happened while simultaneously adding a new baby to the family?  That is a good question.  Some days it feels completely overwhelming when I think of all our family constantly has going on – but most days it just feels like normal.  Our normal.  Which is never really all that normal.