Wednesday, September 23, 2015

Two years ago

Two years ago, Dude and Dolly left me to be placed with a grandma that they barely knew. A grandma that had proven wasn't going to provide a safe environment. A grandma that had done NOTHING to get to know these kids in the 27 months they were with us.

My heart was ripped from me completely.

There were about 5.5 hours between when we got out of court and when CPS came to get the kids to fly them across the state. (One hour of that was spent driving back from court to our house. Another 30 minutes of that time was spent picking up TT and Bart from a babysitter.)

Sometimes foster care really sucks.

I've gained hundreds more Facebook followers since Dude and Dolly left. Most people probably don't even know their story. Please know I don't take foster care lightly. I don't believe that I am better than the bio family or that reunification is always a bad thing. But Dude and Dolly were MY kids. Their mom abandoned them and their grandma never really WANTED them. Their story was supposed to end differently.

Bits of Dude and Dolly are still all over my house. A bracelet turned up in a box of toys just last week. It's been sitting on my desk making me sad ever since.

Dolly turns 8 years old tomorrow. She's in 2nd grade. Dude is 6 and in 1st grade. I have to force myself to think of them as being older. Time seemed to almost stop when they left. I'd give anything to see a picture of them now.

Sometimes I honestly can't believe we're still doing foster care when I think about how bad I hurt after they left. When Daisy and Ricky came, I felt guilty. Like moving on was somehow not honoring Dude and Dolly. (Or something like that. Words fail me.) And now that we've got the babies, I'm a whole mix of crazy emotions. Dolly would have been entirely smitten beyond belief to have babies in the house!

Today is a rough day. Yet, I have moved on and it doesn't hurt as bad as I thought it was going to. They will always have my heart though. Always.

Wednesday, September 9, 2015

no training available

Food issues (for lack of a better description) are starting to become more pronounced with Russell. This is the stuff that there is NO training for. None. I'm in uncharted territory. I now have to gather as much information as I can from those that have gone before me in similar situations and from medical professionals in his life and I have to make a decision as to how to handle things best.

Here's the scoop.

Russell was born August 4, 2013. According to the medical records I was able to get ahold of, he was "on" the growth curve at birth. He was around the 25% mark. But he was on the curve.

Almost immediately, Russell dropped off the growth curve.

We will never know why.

Did his mother honestly not feed him? Did she breastfeed and it didn't go well? Did Russell have legitimate feeding problems from the beginning even on a bottle?

As he got older, he dropped further and further off the curve. When he was hospitalized on February 6 (for a broken arm and the subsequent abuse that was finally discovered), he weighed less than 10 pounds. He was 17 months old.

As you can tell, when he entered foster care, his growth curves for both weight and length started going almost straight up.

Russell was hospitalized for 6 days upon coming in to Care. Then he went to a shelter in Central Texas. At the shelter they worked hard to fatten him up. He was on Pediasure and they fed him around the clock. They also had him eating baby oatmeal and other stage 2 purees.

When he came to me, I kept him on the same diet at first (though he no longer ate in the middle of the night). He didn't take the overall quantities that I was given by the shelter in his dietary plan. (I have no idea if he was honestly taking those quantities in the shelter. I seriously doubt that he was.) But he ate regularly and without complaint. His tongue thrust isn't incredibly pronounced and he had no problems taking food. He could not drink from a sippy cup, but he had no problems with his bottles at all. (Other than being a little messy sometimes as he'd let fluid drip out of his mouth. At the time, I thought little of that.)

As the weeks went by, I started making my own food. At first all I did was make purees like the store-bought jars. I'd make them a little thicker though because he didn't mind. I gave him a wide variety of flavors and he didn't reject anything.

I started adding texture. The first food with texture was probably refried beans. He ate them without complaining. He started eating oatmeal for breakfast - first with bananas, then with cooked apples or even raisins.

I started adding tiny bits of meat into his food about 3 months ago I think. The first time I did it without a gravy though it was obvious that the texture was too much for Russell. I had chopped up tiny bits of chicken and stirred it together with rice and broccoli. He didn't have to chew much to eat it as the bits were so small. But he couldn't eat it. Just couldn't do it. The food would sit in his mouth. He wouldn't try to chew or swallow.

I solved that problem by making a gravy and stirring the chicken, rice, and broccoli into that. Russell ate that batch of baby food without any major issues.

Things have been going downhill for the last couple of months though. So much so that I've got Russell's speech pathologist involved and she's added some feeding goals to his overall list of things she works on with him.

Russell is rejecting food - especially anything with too much texture. He's very much rejecting anything with meat or beans. He'll still eat the oatmeal for breakfast. But he is VERY slow about it and he's going about things in a way that is markedly "not right". He'll devour applesauce or regular yogurt. But he seems to not want to eat Greek yogurt anymore.

Russell only wants to eat super soft purees.

His speech pathologist and I both agree that Russell possesses the ability to eat absolutely everything I'm feeding him. He chews. He can move his tongue correctly around his mouth like he's supposed to. And there are no concerns of aspiration.

But he'll take a bite of oatmeal and he'll just leave it in his mouth. He won't complain. He won't try to spit it out. He'll just leave it there. It will take him as long as a minute before he gets around to swallowing the bite. Even then, he'll often pocket bits of food on either side of his mouth.

He should be able to sweep the food off a spoon. He's not doing it consistently yet. And he's worse when the food is thicker or has a lot of texture. The therapist noticed this morning when feeding him that he even tipped his entire head back to get his oatmeal off the spoon rather than use his tongue the right way.

When he drinks, he guzzles so bad and then milk just runs out of the side of his mouth. Even when I take the cup away from him (because he is now drinking out of a sippy cup), milk will pool in his mouth on the sides and even in the front. He simply doesn't swallow it all.

And lately, if the food I'm trying to feed him has beans or meat in it, he's rejecting it almost altogether. He cries. He turns his head. He won't open his mouth. He won't eat it. And these are foods he was eating, even if not perfectly, for several months.

This is where it gets tricky.

WHY is he not eating? Why is he not eating well?

Is it developmental? He is behind because of the Down syndrome. He's also behind because of all the massive neglect.

Is it the typical food rejection of a young child?

Is it a deeper food issue because of the starvation?

WHAT do I do to help him?

His speech pathologist continues to work with him by doing oral motor exercises. She now feeds him once a week incorporating these exercises into the feeding as well.

She commends me for continuing to feed him lots of foods and textures. But she doesn't have much to say about what we need to be doing right NOW to help him with the food issues.

Do I continue giving him full meals of the thicker, more textured foods and just deal with his rejection and refusal to swallow?

Or do I go backwards and start giving him more full purees so that he'll eat better and the meal is more pleasant and makes him happier.

The last thing I want to do is to turn mealtime into a battleground.

Almost every foster child we've had has brought some sort of food "issue" to the table. None of them have triggered me the way Russell's are right now. Obviously I have to deal with myself here. I've never had a baby refuse to eat though. And it scares me. I don't want to go backwards and feed him purees. What if that's all he's eating when he's 12 years old?!

But I don't like how sassy he gets when he's refusing to eat either. The poor thing was starved for 17 months. I want him to enjoy mealtime. I want him to be happy. This must be factored in to the equation.

His speech pathologist doesn't say much about everything. She just commiserates with me. I guess it's been good that I'm being validated. The way he's eating isn't "right". At least I'm not crazy trying to blow things out of proportion.

But I wish I knew what I should be doing right now about it.

And if y'all tell me to keep on giving him the thicker foods that he's rejecting and not swallowing - y'all had better tell me how to get my head screwed on straight. Right or wrong, it makes me mad. He gets pissy with me with everything I have to do to keep him clean and healthy. (The only thing I don't have problems with is diaper changes.) It wears on me to continually take care of someone and have them reject my care at every turn. Mealtime is personal. Oh so personal. And when he's rejecting the food, it's like he's rejecting me. I KNOW I HAVE TO GET OVER IT. But someone help me reframe it. I can't talk to him about this. I can't reason with him or ask him what he wants. I'm dealing with an infant here. Chronologically he's 25 months old. Developmentally he's well under a year for his language skills and 10-11 months for everything else. I can only relate to him as an infant. No sticker charts. No rewards. Nothing like that. He's a baby.

Thursday, September 3, 2015

thank you girlfrog2003 & Aileen

The PPCD is located at a different campus than the elementary my kids have all gone to.

There is hope.

His ECI coordinator says we start working on the transition when Russell turns 27 months old. That's this November. That should give me enough time to figure out all I need to know to either be OK with the public school system or to start working on getting permission to home school.

I'm glad I can know a little bit better of what to expect. I can handle him being in a self-contained classroom as long as it is an enriching environment.

Thanks for your comments. I feel ever so slightly better about this.

Wednesday, September 2, 2015

thinking WAAYYY too far ahead

Russell is currently receiving speech therapy, occupational therapy, and physical therapy from a private provider (that accepts Medicaid and comes to my home). Because he was already set up with ECI (Early Childhood Intervention) services while he was in the shelter in Central Texas, I went ahead and kept those services as well. However, I do NOT need any more therapists coming in to my home to treat Russell right now. Thirty visits a month from his private therapies are plenty, thankyouverymuch. So I've always told the ECI case manager that I want to keep things as minimal as possible with her organization.

I don't want to drop ECI altogether. They will help me if Russell's hearing turns out to be neurosensory hearing loss. They would send me a special auditory therapist to help with teaching him sign language, or using hearing aids, or whatever we might need. I also want to keep ECI on the books, so to speak, in case Russell is placed back with his mother or any other relative. With one phone call I could bump the services up to a weekly visit from a therapist along with case management. That would keep extra "hot bodies" looking in on Russell regularly. He would definitely need as many mandatory reporters in his life as possible should he not stay with me.

But for now, all I need is the minimum from ECI as they will allow. His case manager (let's call her Larissa) had an appointment with me today. She finally (sigh - finally) understood what I've meant about this all along. She asked today if she could stop coming to my house monthly and simply handle the case management part of the program over the phone. If I could have done a cartwheel of excitement, I would have turned one in my kitchen when she said that! Yes!! Please only call me once a month. Keep him in the program. But stop coming to my house once a month for no good reason.


I got Larissa talking about transitioning Russell out of the program though. Russell turns 25 months old this Friday. When a child is 27 months old, ECI starts the transition process to the next step. For Russell, the next step is public school. The day before a child turns three, they are discharged completely from the ECI program. So I asked Larissa how this will all work. Larissa said that because Russell will be three years old next fall, that he will automatically start in the public school (even though the public school cut-off is to be age four by September 1 for preschool - Russell starts young because of his disability). She basically said the special ed bus would pick Russell up in the morning, he would attend preschool at the local elementary, the bus would take him to Head Start in the afternoon, then the bus would bring him home from Head Start.

I had to instantly correct her. There is no busing service for our local Head Start.

I asked her if Russell would have a one-on-one aid or what kinds of accommodations he would most likely receive.

My heart sank. Larissa told me that Russell would simply be placed in the self-contained classroom at the school for age three for sure. From there, when he's four and after testing, he might get to mainstream out for classes like PE or music.

My Pumpkin was in the self-contained special needs classroom in our local elementary. She was the highest functioning child in the room when she attended. And it was a HORRIBLE classroom.  The idea of sending Russell to that school, to be in that classroom, to do what little they do there, makes me sick to my stomach.

Head Start is only slightly better. Larissa told me I wouldn't be required to send Russell to public pre-K and Head Start. She agreed with me though that none of the Head Start programs in our area are equipped for children with special needs. I remember how poorly I thought things were run when I was required to send Dude to Head Start. And there were no obviously disabled children in the school at all. Again, I can't imagine sending Russell into that environment.

So now I'm getting waaayyyyy too far ahead of myself.

What am I going to do when Russell turns three years old if he's still with me?

If we've managed to adopt him by then, I will continue with private therapies and I will home school him.

If he's still a ward of the State though - then what?! The State of Texas requires that I send all my foster children age three and older to public school.

A bill was introduced this year that would have allowed Texas foster families to homeschool their foster children. House Bill 2799 would have allowed it unless a court order prevents home schooling, a court hearing finds that home schooling is not in the best interest of the child, or federal law requires another school setting. It would have been the first law in the nation to allow foster parents to home school foster children without first having to obtain consent from the Department of Family and Protective Services.

That bill died on June 1, 2015.

I really need to not worry about this. August 2016 is so incredibly far away in Foster Care Land. A zillion things could happen between now and then.

Still, I'm researching my options.

According to the CPS website, this is the Department's policy on home schooling:
If the caseworker believes home schooling or a similar alternative is appropriate in an individual case, a written request for an exception may be addressed to the regional education specialist. Approval depends on whether the proposed home schooling plan meets the child’s academic, social, and other needs in a safe, stable setting and is in the best interest of the child.
To request an exception to the requirement for standard schooling to allow the child to be homeschooled, follow procedures in 15228.2 Requesting an Exception to Standard Schooling. 
I figure I'm going to have to chase this rabbit hole sometime around the first of next year. I certainly can't wait until summer or next fall.

I really should let it go. It's waaayyyyy too far in the future.

But I want to advocate for my cherub. And I can guarantee the public school down here is NOT where he belongs!

(Secretly I'll be praying for a fast adoption, a job opening for my husband in another state, and a move all before school starts next fall. It'd be nothing short of a miracle. I know that. But a girl can pray.)