Wednesday, March 30, 2016

Itty Bitty: 10 month update




So, not a lot has changed in our house this week, except that we've begun to come to terms with certain new events in Itty Bitty's case. We are still praying to be able to adopt him; we are the only family he's ever known in his entire life.  However, due to circumstances beyond our family's control, Itty Bitty's future is still in limbo.  Things that should have been done and decided before he was even a month or two old still haven't been addressed...and there's nothing we can do about it but wait.

Eli's adoption was only 3 years ago...and I distinctly remember hating all the waiting, while simultaneously being resigned to it....and it's similar to how I feel now. The difference, though, is that a certain dread hangs over me that wasn't there before. In Eli's adoption I knew that my baby boy was coming home to STAY....and in Itty Bitty's case, we don't have that reassurance.

Sadness aside, I decided that it was time to look out the window, realize that IT'S SPRING, and make the best of the situation since we're in this for the long haul.  Then, I realized that it's been a while since I've written an update on Itty Bitty's progress and he has changed SO much in the last couple of months.

Itty Bitty is no longer so tiny...he now measures 50th percentile for height and between 25th and 50th percentile for weight and has 6 teeth (1 of them is still not in all the way, but IS visible).  He loves to laugh and interacts really well with us.  He works hard to get Eli's attention and loves to be included in conversation and in the "big boys' " playtime.  . He enjoys playing with toys, can now pass them back and forth fairly easily between his hands, and can often pick up a toy that he's dropped.  He sits steadily, and plays well in that position, though he cannot get into a sitting position by himself.  He eats very well, and is down to 2 or 3 bottles a day and eats a wide variety of solids. His reflux has improved enough that he is down to ZERO food restrictions.  He still has some occasional issues with slow digestion, but these tend to be well controlled with an ounce or two of juice every day.  He definitely does have occasional temper tantrums that seem to come from simple frustration...I have a feeling if he was more mobile that we would see fewer of these. And...drumroll, please...he is finally REALLY babbling!!  For so long, he would only make vowel sounds and screech...but now, he's suddenly using a variety of consonants.

Every time he has OT! Note: this is a meme, not Itty Bitty...is it sad that I have to disclaim this??
He still has some very obvious, pronounced struggles with mobility and we're working on them with an occupational therapist. It's startling to see him side-by-side another child his age, because it really shows how much help Itty Bitty needs. He does not roll, sit, or stand without help, and he cannot crawl forward (though he can scoot backward while on his tummy, and lately, he's been getting into a crawling position on his own).  Unfortunately, with a lot of his milestones, we'll see him do something once or twice, and then he can't seem to repeat it later.  For example, months ago, I saw him pivot on his belly, trying to reach something. He did it twice...but since then, he's not been able to do it again until recently, even with encouragement and help. Two weeks ago, when pivoting became one of our occupational therapy goals, we started to see progress  again, and he has really started to try this more.  His early intervention OT has been wonderful, and she's been great about supporting us, giving us exercises to work on, and helping us set goals for his progress.  Some of his goals he has met surprisingly quickly...some are taking MUCH longer than we thought. We're finding out that Itty Bitty seems to be a smart baby, and he catches on really quickly once we can find ways to get his muscles to cooperate. At some point, I really believe we are going to get him crawling, standing, and walking, though it will take him a little longer.  This morning, he surprised me by "walking" a few steps on his knees...sitting on his knees has been difficult for him to learn, so I was shocked to see him move this way...but very happy for him, too. Hopefully, this won't be one of those tasks he learns, but then cannot repeat. I am very curious to see what the neurologist will say when we go this summer; his pediatrician believes that his delays may be due to mild cerebral palsy.

He has met some of his OT goals since we've started therapy, though...like rolling back to front with minimal help, reaching up/out with his hands, holding his own bottle, and not holding his hands behind his back. He can clap his hands (though one of them is usually in a fist), and he is beginning to give "high fives" and sometimes tries to copy us. He reaches out for us when he wants to be picked up, he pats us on the back when he wants to be patted, and we're encouraging him to point at things he wants (he hasn't figured that out yet), and learn to use a straw cup.

There are also some things that he could do...but that he is refusing to do...such as picking up food and putting it in his mouth. As a mom who has always been a fan of Baby Led Weaning, this is driving me nuts. We are encouraging him to do try to feed himself, but he tends to melt down with every attempt. Picking up food is rarely the problem...he seems to enjoy doing that.  But, even if he's clearly hungry and enjoying having ME put food in his mouth, he completely dissolves into a tantrum at my slightest attempts to help him self-feed. This has happened at daycare, too, and we're all trying to figure him out.  He does the same thing with his straw cup, even when he's thirsty.  He wants his water or juice...but will not hold his cup (even though he now has the physical ability). He absolutely hates having his teeth brushed (even with a gentle infant toothbrush or a soft rag), and will close his mouth and refuse to open it. Sigh. He's figured out that the moment he cries over his toothbrush, his mouth opens and I can brush them while he cries...so he simply purses his lips, clenches his jaw and stares at me.  Before Itty Bitty, I'd never had an argument with a nonverbal 10 month old infant.  The job always gets done, much to his chagrin...but I'm not sure how good of a job it is...

At this point, I'm wondering if he may have a sensory issue or two that we need to figure out, since he has some other unusual behaviors.  Interestingly enough, though he tends to be an adventurous eater, he often recoils from unfamiliar textures or sensations against his hands or body.  I was thrilled, recently, to watch him enjoy a sandbox...I thought he'd hate the feeling of the sand, but he really seemed to love it. It's so rare that he enjoys new sensations that I will be getting him a sandbox to enjoy at home : ).  As a Montessori mom, I've found it somewhat difficult to not be able to do activities for his age I know that he really can't do yet...but hopefully, we'll be able to start some of these soon.
 

Thursday, March 24, 2016

Struggling with Frustration

The last few weeks have  been so emotionally intense, it's amazing that we haven't come unglued.  In many ways, though each member of our little family is dealing with his/her own issues, we HAVE been able to stick together and help each other.  And I want to be clear, as I begin writing, that I am writing about my experiences as whole, and I'm not singling any particular person out.

I don't like to write much about negative things, but I feel like I need to get my voice out there. Going into foster care, I'd heard that things could sometimes get ugly, but in the beginning, I believed that the need to help kids was critical, and I was excited to do my part.

We originally wanted to foster for at least two years. In the beginning, everything was fine.  We knew what to expect from the age group of children we received, and we have loved the kids who've been with us. We loved the vibrancy of having more children in our home. We loved watching Eli bloom into an amazing leader and big brother. We dreamed that maybe we could continue much longer than two years, and be the kind of family who could help lots of kids. I pored over information, and excitedly watched each child we've cared for begin to grow and learn to heal.

Six months ago, I couldn't have imagined walking away from this. I wouldn't have been able to imagine feeling burnt out so quickly. Now, however, unless Itty Bitty or Scooter's case takes an extraordinary amount of time, we will fall significantly short of our original goal of two years.

What happened?

The reality is that the need to help kids IS critical...more than I could ever have imagined.  And it's been truly devastating to me to see people in the mix who SHOULD care and SHOULD be working hard to do what's best for kids, but cannot or will not.  This includes people who are PAID to make sure kids are getting what they need while in state care.

I've been demeaned.  I've been lied to. I've been disrespected. I've been ignored.  Repeatedly: again,  and again, and again.

But when it comes to children who is developmentally delayed, or who can't hear, or can't see, or can't speak well, the same people who have no problem looking through my pantry can't seem to fill out a one page referral for these children to receive testing or services.  When it comes to the fact that my kids do need to attend preschool, the very people who are supposed to make sure the daycare gets paid repeatedly ignore requests for payment, putting my kids at risk for disruption.  When it comes to the fact that these people are supposed to visit the kids at least once a month in my home and repeatedly "forget", or cancel 30 minutes after they were supposed to be there, or show up two hours late, no one seems to care that we have to deal with the disruption in our routine that this causes.

I'm still fighting for the kids, so that they will get what they need, but I am frequently getting caught in a web of caseworkers, biological parents, family members the bio parents hate and/or love, transporters, and the children themselves...and many times people are angry, contentious, or at odds with one another, because they are either uniformed or underinformed on what's going on in a particular child's case.  I expect some level of anger and grief from a biological family. I did not expect this from paid professionals who are supposed to have a child's best interests at heart.

The thing is, I knew that some people in these tangled webs would occasionally let me down, as I might them.  But to be consistently treated poorly when all I want to do is help the kids is unfathomable and intolerable.

People who are supposed to be interested in the kids THEY removed from the original home are demanding to know why I even care...after all, I'm just a foster parent right?  Don't I know this is temporary?

What they don't realize is that because I know how temporary this can be, I want to help the kids I have as much as I can before they leave my home.

The better question is why don't THEY care?