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.
Parenting a kid with FAS can be a lonely place...my sweet boy has FAS too. We opted for formal diagnosis at a genetics clinic that has an FASD specialty team. Our evaluation included assessments in speech/language, occupational therapy (fine motor & sensory processing), & adaptive behavior as well as genetics testing with a developmental pediatrician. The pediatrician made the final diagnosis based on information from all the assessments and questionnaires, what medical history we had on our boy, and physical indicators of FAS. They were amazing and I feel so lucky to have had access to them (even if it was 5 hours away). We will seek out a neurophysch eval eventually to help pinpoint exact strengths/weaknesses in his learning, but right now our focus is on doing everything that we can to prevent the secondary diagnoses that are so common in people with FAS. While we aren't really accessing any specific services right now, just having the diagnosis has let us give us all a break. We know that even when it feels crazy around here, it's not because he's a bad kid or we are bad parents. It's a brain injury. Knowing makes it easier.
ReplyDeleteOh no, I am praying for you and your family. I don't really have any advice, I am taking an attachment theory in early childhood class right now, and they have covered a lot of this topic. Wish I had something helpful to add.
ReplyDeleteIf her mom was drinking that much, is it possible her memory/knowledge of Tootaw's date of conception and how far along her pregnancy was at the birth could be wrong? It wouldn't change what you're dealing with now, of course.
ReplyDeleteI doubt it. I'm not under any notion that she was just downright drunk all the time. Also, I think the hospital probably has ways of dating a baby's length of gestation, if not during ultrasounds, then after the baby was born.
Deletei will be interested to see what you find out...i think i may be in the same boat as you are with my adopted daughter lizzy.
ReplyDeleteWe will definitely be praying for you and Tootaw!!! Wow! About the 24 weeks gestation and FAS. I will facebook message you some of my friends who have had babies at 25ish weeks and another friend who adopted a daughter who has FAS. They can offer more helpful advice than me. I will "just" pray. :)
ReplyDeleteI am sorry. I am so, so sorry. I can't even imagine how you must be feeling right now. Of course she's the same Tootaw. Of course you still love her unconditionally. You are amazingly strong, and whatever Tootaw's future holds I know you will be there to guide and support her.
ReplyDeleteHi, I can't address the possible FAS, but I can tell you that the Sensory Processing Disorder is not the awful thing I thought it was when I found out my son had it. He was born 5 1/2 weeks premature and was always a quiet baby. I just knew something was different, regardless of the many family and friends who said otherwise. (I know how you feel in that regard. Frustrating!)
ReplyDeleteMy son goes to an Occupational Therapist and has for two years now. HUGE difference! Hopefully you can find one in your area who specializes in sensory issues. He also saw a Functional Neurologist who helped with exercises we could do at home and also incorporate into his OT sessions.
My son didn't speak until he was three, but we worked with a speech therapist who helped us learn how to communicate with him via sign language for immediate needs and trying to get ANY verbalization out of him. It was hard because we were used to always anticipating his needs, not waiting for him to "ask" us for a drink or a toy since he never asked.
He is now four and is rarely quiet anymore. He has Apraxia and his speech therapist is amazing. I advise you find one who will let you sit in on the sessions so you can work with your child all day - every day.
Working with a child with sensory issues is challenging, but the rewards are huge. The Funcional Neurologist pointed out that our son isn't incapable of learning new skills, we just have to rewire his brain to know how to process how to do those skills. And we had to do some crazy things; talk to his left eye, have him wear crazy, blinking glasses, walk around the house blindfolded with a pool noodle. But that's what his brain needed because in six months my sons developmental age went from 14 months to 23 months with those three therapies. He is now testing average and we are soooo proud of all his hard work!
Epic comment. But I just wanted to let you know you are not alone!