Wednesday, March 30, 2016

Osteogenesis Imperfecta

When Russell came in to foster care (February 2015), he was healing from fifteen fractures: 2 in the skull, 3 in the ribs, and both arms and both legs in multiple places. All of the fractures were at different stages of healing. The most recent one was his left arm. That one required casting for a couple weeks. (He also had a lacerated liver and at 18 months of age weighed less than 10 pounds.)

At some point in time during the initial investigation, someone mentioned something to someone about needing to get the testing done for Osteogenesis Imperfecta (brittle bone disease). No one did this though. Russell was released from the hospital and sent to a shelter in Central Texas. And no one told me to order the test done when he joined our family.

Then Russell broke his leg while under my watch. (January 2016)

Bopper scrambled to get information. She wasn't the case worker when Russell came in to Care. She didn't know if the OI test had been done or not. After digging through records, it was determined that the OI test had not been done. I was told to get one scheduled.

I had our family doctor get a referral to a geneticist the day after we were released from the hospital. The soonest available appointment was for today (March 30, 2016). I loaded up the babies this morning and set off for the geneticist. Thankfully Russell was the first patient on the list to see the doctor. Our wait was minimal (the doctor came in about 30 minutes past our appointment time).

The doctor walked in to the exam room and basically started off the show by saying the OI test is very expensive (around $2500) and the only lab in Texas that does it does not take Medicaid. He then spent a lot of time explaining how the insurance system works and how the Baylor College of Medicine would do the test but they would require a credit card up front. Basically, if CPS wants the test done, they can foot the bill for it.

The doctor performed a visual exam of Russell. He measured things. He examined all his limbs looking for deformities. He looked at his teeth and eyes. When finished, the doctor indicated that Russell doesn't have any of the markers for even mild Osteogenesis Imperfecta. Now, I don't think this will hold up well in a court of law. But I'm not sure the results of this test matter in court anyway. No one is trying to press charges for the broken bones. No one was charged criminally at all. They claim they don't have enough evidence. And as the case stands right now, Mom is in no position at all to be reunified with her children. So this test would be a formality. The results of it won't change the outcome of the case at all.

Still, none of this is up to me. All I can do is inform the decision makers of what happened today and let them sort it out. I called Bopper as soon as I got in the car. She didn't pick up so I left her a message to call me. Then I called Ms. Lawson, Russell's lawyer. Ms. Lawson didn't pick up either. So I made one more call to her office. I was able to speak with a receptionist. I left a message with the receptionist explaining the situation as briefly as possible.

Ms. Lawson sent me a text letting me know she was in court.

She must have felt the situation was important though. Not too long after I hung up with her receptionist, I got a call back. Ms. Lawson had some more questions.

So back and forth we went for a bit. Her receptionist would ask me a question. She'd relay my answer to Ms. Lawson. Ms. Lawson would ask another question, the receptionist would call me. It was a bit cumbersome. But Ms. Lawson determined that she would be requesting a special hearing to let the judge know about the inability to do the OI testing right now.

Then Bopper returned my call.

Before we could deal with the drama of the OI test - we first had to deal with the drama of the grandparent visit that didn't happen today. I had spoken with Bopper last week to tell her that the appointment at the geneticist at 9:00am was going to make a 10:00am visit impossible today. Bopper agreed with me that the doctor appointment could count as a "visit" and that she would let the grandparents know.

Unfortunately, Bopper forgot to tell the grandparents anything last week.

So while I was out today, Herman got to deal with the visit supervisor that showed up and then the grandparents that arrived a few minutes later. Thankfully I had warned Herman this might happen so he was prepared.

Bopper handled all that. Then she called me back so we could discuss the OI test that didn't happen.

There wasn't much for Bopper to say or do. She thanked me for letting Ms. Lawson know already and she told me that she would tell her supervisor immediately. (She also mentioned that the staffing that was supposed to happen yesterday didn't but she was scheduled to sit down with her supervisor this afternoon to staff the case.)

That's all I know. The geneticist didn't schedule another appointment. No tests were run today. Decision makers have to decide how to proceed. Lord willing they will do so intelligently. Personally, I don't think this expensive test needs to be run. The System is strapped for cash, this results of this test aren't going to change the placement outcome, so it doesn't seem necessary. At least not to me. But I'm not a decision maker in this case.

Once home, I sent an email to Ms. Lawson giving her some of the information I had relayed via the receptionist in writing. I wanted to make sure the information had been relayed accurately. I also reiterated that the geneticist doesn't think Russell has any of the markers of OI. I copied a list I found on the internet to show her what the signs are:

  • bone deformities
  • multiple broken bones
  • loose joints
  • weak teeth
  • blue sclera, or a bluish color in the white of the eye
  • bowed legs and arms
  • kyphosis, or an abnormal outward curve of the upper spine
  • scoliosis, or an abnormal lateral curve of the spine
  • early hearing loss
  • respiratory problems
  • heart defects
I mentioned again that Russell is normal for a child with Down syndrome.

Russell's visit with his grandparents is likely to be rescheduled for Monday morning next week. I guess I'll hear what the decision makers decide to do later. I'll keep on doing what foster parents do best...wait to hear what to do next.

Monday, March 28, 2016

praying for Bopper

Bopper is a young thing. I know she's not fresh out of school – she has been with CPS for several years now. But she's still quite young. (Thus the blog name "Bopper"...as in Teeny Bopper.)

Bopper is also VERY VERY VERY soft spoken. She admits to being scared of everyone and everything. Even she finds it ironic that she's in this line of work. She's sweet and quiet and reminds me of a church mouse.

I need Bopper to be the exact opposite of that tomorrow.

You see, Bopper has a meeting with her supervisor tomorrow to "staff this case". That means her supervisor takes time to have a sit-down meeting with Bopper to go over important details concerning these kids. She is to give him details and they work together to decide what should happen next.

I'd like to think that he always has his hands on this case. I'd like to think that the supervisor knows what's going on. But that's not realistic. So these "staffings" are held and that's where Bopper catches him up.

And tomorrow, Bopper has to go over the most recent visits and things that have happened with Russell's grandparents. She has to bring valid concerns to her supervisor's attention. She needs to be able to speak strongly and she needs to convey a real opinion about what she thinks should happen and how this case should move forward.

I'm praying that Bopper grows a set and is more opinionated and stronger tomorrow than I've ever seen her before.

You see, some things happened last Wednesday with the grandparents when they were in my home for their visit with the babies that concerned me. On the surface they might seem minor. But if you look at them seriously and factor in that Russell has severe special needs - and will have severe special needs for the rest of his life - the situation isn't really minor at all. Not only did they concern me, but they concerned the visit supervisor as well. I know the monitor took notes and reported everything. I called Bopper to talk to her about them myself. I told Bopper what happened and strongly suggested that she get a copy of the visit notes soon.

And yes, I'm being vague. I'm not going to open my blog up as a place to bash on the family of origin. Because if everything is determined by the State that Russell and Star be placed with the grandparents, I'm going to comply and I will continue to work with the grandparents as much as I can to make the transition a healthy one for everyone involved. The children were safe in my home. But based on what happened, there are new concerns about the long-term viability of the babies being placed with the grandparents.

I've been praying all weekend for Bopper and I'm going to focus my prayers on her as this case moves forward. She always tells me what happens in these staffings. I can tell that her supervisor is rather cut and dry and he wants Bopper to be more that way herself. I know that Bopper doesn't want these children placed with the grandparents for many reasons (ones that were presented in the home study that they failed plus the new concerns that have been brought to light). What I don't want to have happen is for Bopper to present her concerns to her supervisor in a wishy-washy way. I want her to be direct and concise. From there, I hope that CPS can develop a plan that is viable that will keep Russell and Star safe.

If this plan is for the children to be placed with the grandparents, I want them to develop a timeline and make it happen. If the plan is to abandon the idea of placement with the grandparents, I want them to come up with a viable alternative.

What I don't want to have happen is for CPS to simply drag this case out as long as possible. And sadly, Bopper has told me specifically that that is what she wants to do for now. I realize that Bopper thinks dragging the case out keeps Russell safe in our home. But it's not healthy for cases to get drug out for a long time. Either the grandparents are an option for permanent placement or they aren't. I don't do well living in limbo forever. I'm here for the babies as long as they need me. But I don't believe that long-term foster care is good for anyone if there isn't progress being made in the case. I believe that my family deserves some finality too. Again, I have no problem being a resource and having the children in my home when progress is being made. But right now, people need to determine if the grandparents are an option or not. Don't just keep the kids in foster care because you don't want to deal with any other solution.

Bopper says her meeting with her supervisor is tomorrow (if he doesn't reschedule it). I'm praying for Bopper. Will you join me in that prayer? And yes, as soon as I hear anything, I'll let y'all know what is decided. We don't go to court again until May, but a million things could happen between now and then. This is foster care after all. And foster care sucks.

Wednesday, March 16, 2016

Visit in my home #2

I got a text from Bopper this morning at about 8:30am. It's Spring Break in Texas and the grandparents wanted to know if it would be OK if they brought all five of their kids to today's visit. I took a deep breath and responded yes. It's only two hours. I really didn't think it would be that big of a deal.

However, as I thought about this, it bothered me to know that legally this family could not travel to my home all together. They have only one vehicle and it seats only five people. Four of their children are required by Texas law to be in a car seat or booster. The car seats are to be installed per manufacturer's instructions. And I'm pretty sure no manufacturers say kids can be in the front seat. So, technically, four of their kids need to be in the back seat. They don't have a vehicle where this is possible. I have briefly expressed this concern to CPS before - but only how it would affect unsupervised weekend visits with the babies as I assumed those were going to be starting very soon and I wanted to know how I would be required to handle that if I were doing a drop off by myself.
 
Side note: Typically we meet in the parking lot at the CPS office in the evening, after the office is closed, to drop-off kids. At least that's how it worked with Daisy. I wanted to know what my reaction should be if the grandparents didn't have proper car seats for the babies AND what I should do if they didn't have proper car seats for their own kids. Bopper's initial reaction was that I would only be responsible for things if they didn't have car seats for Russell and Star. She said that the grandparents are looking for a new vehicle. And then she said that unsupervised visits aren't going to be happening for a long, long time.
 
Anyway...I decided that if I didn't say something to CPS about my transportation concerns again, it would eat at me too much. I was VERY CLEAR that I didn't expect anything to change today! I still expected that both grandparents would come along with all five children. However, I felt it was necessary to at least point out to CPS if were to happen, it wouldn't happen legally.

I'm not sure what Bopper said. But the grandparents decided that Grandma would come with only three children and Grandpa would stay at home with the other two.
 
The visit went well enough. I'm not going to complain. This is unique ground we're covering. While co-parenting might be the norm in other parts of the country, I've been told by every single person involved here (my agency, CPS, and the visit supervising company) that having visits in the home of the foster parents is completely unheard of.

Grandma and her three oldest kids came to the visit. They played in the living room with the babies for a little over an hour. Then Grandma asked about feeding Russell lunch.

Both babies were brought into the kitchen. I got lunch ready and then stepped back a bit so Grandma could feed Russell (and Star could feed herself – Star refuses to eat off a spoon but will feed herself anything you put on her tray). I couldn't leave though, as I was baking cookies.

The visit supervisor did a great job of translating back and forth between Grandma and I. Russell was being a bit of a stinker and didn't want to cooperate with Grandma as she was feeding him. Star seemed uncomfortable too. It was more just because it's awkward and different though. Grandma certainly wasn't doing anything wrong!!!! I tried to explain to Grandma that his behavior wasn't normal at all, though. And then I explained that she'd likely see more behavior like that if/when he moved to her home and that she should expect a lot of regression. She asked why.
 
I explained that Russell doesn't understand what's going on around him. There will be no way to explain to him why he's moving in with them. I've been taught in several different trauma trainings that a move can cause a kid to regress as much as a year. That's why kids in foster care need additional supports to heal. And even though Russell is safe in our home, a move is still a move. That's one reason why I wanted visits to be in my home. The kids will see me interacting with the grandparents. They will see me trusting them. And it will be easier for the bond I have with the kids to transfer to the grandparents. Grandma expressed gratitude again for all we're doing for the babies.

As for Russell's behaviors though, I went on to explain why I'm so incredibly strict. For example, when it comes time to wash his face, I won't let him turn his head away from me. I firmly grasp his head and tell him no if he doesn't cooperate. I don't play with him or make it seem like what he's doing is OK.

It's not that his behavior isn't normal for a 2 year old. It is! But his maturity is going to happen so incredibly slow, that if you don't start NOW to direct appropriate behavior, you'll be dealing with an 5 or 6 year old that won't wash his face or let you do it.

I hate feeling like I have to present the worst case scenarios. Of course not all kids with Ds are going to be that delayed. But kids with Ds are very known for having behavioral difficulties. Anyone that parents Russell will be doing themselves a favor by being incredibly consistent and firm in establishing proper rules and expectations.

It's hard to convey all that I know about Down syndrome in these short meetings via a translator. I certainly don't try to be negative all the time either. But I want the grandparents to understand what to expect. I get the impression they haven't starting trying to learn anything about Down syndrome on their own. That makes me a little sad. But, it's apparent that they love Russell so I cling to that.

I explained as much as I could about Russell, what's normal for him, and what to expect as he gets older. It seems harsh in a way. But if they're not going to try and learn anything on their own, they need to hear from someone that it's possible that Russell won't ever be developmentally/emotionally older than 8 or 9 years old.

I was thankful this visit supervisor cut things off at noon, exactly. (Last week lunch drug on longer that it should because Grandma doesn't keep things moving with Russell and he doesn't want to eat for her well. The visit went on until almost 12:30 and the supervisor let it. I was too uncomfortable to tell everyone to leave. LOL)

After everyone was gone I called My Genius Sister to get a little bit of what I call "therapy". She lets me process all my feelings and lets me vent so the things that bother me don't eat me up. There were a few things about this visit that bothered me significantly. But I spewed everything to my sister and I'll suck it up and go on from there. If I get a chance, I will convey my concerns to Bopper. But I don't think it's anything Bopper doesn't already know so I'm not too concerned.

My big kids should be back from the trampoline park and lunch soon. I sent them off so they wouldn't have to be here during the visit. The rest of the afternoon is just for us. I like days like that. And because the visit was in my home this morning, the transition to nap was very smooth. As awkward as these visits are, they are still best for the babies. I'm glad we're able to do things this way.

Saturday, March 5, 2016

Baby Jail

I will start out by first admitting that we have been blessed with a huge house! We've got five bedrooms and 3200 square feet. There is a lot of open space downstairs and we've got a huge playroom upstairs. We are lucky!! Very lucky!

Baby Jail 1, on the left in the photo above, is tucked in the corner of our living room. It's up against a pony wall. On the other side of the wall is Baby Jail 2. It's next to my "office" area where I do my freelancing.

The baby jails are large. We certainly don't "need" two of them. But Miss Star is determined to get into trouble almost 24/7. She loves to leave the living room and try to go up the stairs or mess with things she's not supposed to (things like electrical cords and fun stuff like that). That's why I ended up moving Baby Jail 1 into the living room. Sometimes in the evening I just want to relax. And I didn't like having the babies in the jail away from us while we watched TV and whatnot. Due to our schedules, I freelance mainly when the babies are asleep now, so it made sense to move jail into the living room.

I decided to buy Baby Jail 2 for a couple reasons. One reason is because we have the room and I knew it would be nice to have a jail next to my office and one in the living room. The biggest reason I bought jail #2 though is that Russell is rough with Star – very rough! He doesn't mean to be. And it's nothing I can really discipline. But he bites her. And he hits her. And he tackles her and makes her fall down. I have to answer for every single injury and I simply can't take chances. There are times when I can't watch the children 100% of the time. Russell bites out of nowhere...even when I am watching. So I worry even more if I'm not in the room directly with them. Plus, I still need to do things like laundry, fix dinner, or even just take a shower. Having a baby-proofed separate space for each kid was necessary. Star no longer enjoys being in a bouncer. She wants to move around. Baby Jail made the most sense.

Baby Jail 1 - in the living room
Baby Jail 2 - on the office side

How I Organize the Toys

Developmentally, Russell is still very much an infant. He doesn't pretend anything. He doesn't even push cars around. When Russell plays, he takes toys out of containers and puts toys back in containers. He shakes and bangs things together. And he throws. He chews on everything.

Russell needs infant toys. (Star does too. But she's developing normally. I'm going to focus on Russell's needs as I describe how I organize the toys. Of course, everything applies to Star as well.) I have musical instruments, blocks, cars and other vehicles to push, shape sorters, and ball drops. He also has a huge selection of rattles and chew toys.

Russell gets bored rather quickly. He can't help it. There's only so much to figure out when all he does is dump toys out and shake them a few times. It doesn't make sense for me to buy him "bigger kid" toys though. He doesn't know what to do with them. When Russell gets bored, he throws even more. He also starts "stimming" by rocking back and forth and humming loudly. One solution to his boredom is to offer him a new selection of toys regularly. I try to switch up his toys where he's playing 1-2 times a day (depending on how long he's playing in jail...he certainly doesn't stay in jail all day). In order to make this process easier, I bought some baskets.

Each basket has a different assortment of toys inside. There are things to push, things to bang that make noise, and things to chew on. Having the open baskets that stack make it super easy to swap toys out. I simply grab everything in the jail and put it in the basket. Then I put a new basket in jail for the child. All the baskets live outside Baby Jail 2. (Again, we've been blessed with a lot of room. I know that and appreciate that!)

Rotating toys is such a wonderful thing to do for any age kid! In fact, I miss having a basement. When TT and Bart were younger, I swapped the toys out in our playroom a couple different times a year. When we moved here though, that wasn't possible as I don't have storage room and all the toys fit in our playroom. Doing it on a smaller level like this with the infant toys has been wonderful though! It keeps the babies entertained longer and that makes everyone happier.

The only thing to note is a skill that Russell learned just last night. Apparently it is no longer safe to leave the large basket in jail with Russell. He figured out how to turn it upside down and was almost able to completely break out of jail in a matter of minutes. Russell is no dummy! So as much as he plays with the baskets by putting toys in and taking them out, he doesn't get to do that part anymore unless I'm directly in the room with him.

Tuesday, March 1, 2016

the meeting with the grandparents

I've been meaning to blog about how the meeting with Russell's grandparents went. Here's a quick summary. My bottom line...I sure wish I would have taken Spanish in high school instead of French. And as much as I know learning Spanish would be good for me, it's just not something I'm up to doing right now. Needless to say, the meeting was very interesting.

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The grandparents were early. They brought two of their kids. They sat out in their car. I don't know what they were waiting for. After about 10 minutes, I went outside and told them they could come in. The lawyer messaged me right about the same time the grandparents arrived to tell me that she was hung up in court but would be there as soon as she possibly could.

The grandparent and their kids came inside and sat down in the living room. I looked at them and said I was feeding the babies in the kitchen. The house has an open floor plan. They could have easily followed me. They didn't.

I sat in the kitchen feeding the babies for a bit. It was weird. I went in the other room and asked them if they wanted something to drink. They said no. I tried to tell them there were more toys on the other side of the pony wall for their kids to play with. They just nodded.

It was weird. There's just no other way to describe it.

When I was finished feeding Russell, I needed to put him down for nap. I walked out to the living room. Grandpa is the only one that talks to me. (He speaks some English. Grandma speaks none.) He put his hands out. He wanted to hold Russell. I tried to explain that Russell needed to nap. It was awkward. I tried to explain Russell HAD to nap so he could handle the visit this afternoon with his mother OK. Grandpa seemed to understand.

I put Russell down for nap and went to get Star out of her highchair. We all sat around in the living room.

The lawyer was almost an hour late. We sat around not talking to each other for almost 45 minutes. They played with Star. Their kids played. It was weird. But not painful weird.

What was REALLY weird was when the lawyer got there. She started talking to them - in Spanish. They went on and on and on. The lawyer translated nothing for me. Then she turned and asked if I was following along. I shook my head and reminded her I know no Spanish.

The lawyer ended up translating only about 20% of the next hour's worth of conversation for me. It was weird.

I really wish I spoke Spanish.
I'm too old to learn Spanish.

The gist of it all...

The lawyer made it clear that they will not be allowed to let the babies have contact with Mom. Mom is still with the abuser. (Granted, no one is being held legally responsible for the physical abuse Russell suffered. Star's dad is the suspect – but no charges were filed.)

There was a lot of talk about this placement of the children with them being permanent. We discussed how Russell will most likely never live independently.

I went over as much as I could about Russell's health. I did get to talk a lot about his feeding issues and his speech delays. They asked a few questions. Not a lot. But enough to be able to tell they were listening and taking what I had to say seriously.

As the meeting went on, I basically just went through Russell's binder section by section. (I keep all medical records together in a binder for my foster kids. Russell's is completely full and it's 3" thick.) I opened up each section and explained the specialist, why he sees that specialist, and what to expect in the future.

They listened to everything I had to say. I felt like they took it all seriously. They are VERY nice. They love the children...and they just met them. But they seem like good people and maybe even decent parents. If I'm being completely honest, I appreciated how their own children behaved during this meeting and how the grandparents redirected them when necessary.

Grandpa said he can tell I "do more" than what most people would. He thanked me several times. I don't foster for compliments. But it's nice when family sees that I care as much as I do.

I still have serious reservations about this placement. But if it's going to happen...it could be worse. Everything is up to CPS, the lawyer, and the judge now. It's not my place to do much else. I can express my concerns appropriately (not whining, or complaining - just stating truth based off of personal observations) during home visits with Bopper. But it is not my place to complicate things for CPS. I will do whatever I can to support their goal. They are the ones that have full contact with all parties involved. They have been to the grandparents' home. They have seen the home study and know much more than I do about everything. So even though I have reservations, I'm not a decision maker when it comes to things like this. I do need to step back and know my role.

Foster parents that think they need to "fight" everything bother me sometimes. I see a lot of interactions in foster parent "support groups" online about going to the supervisor. Calling the lawyer. Hiring your own lawyer. And things like that.

Yes, these kids have bonded to me. Yes, these kids are perfectly meshed into our family. But that doesn't mean they can't bond to someone else or become a part of another family.

And yes - it's incredibly hard for me to write that. Sometimes my brain knows all of that is truth and I have to work hard to convince my heart.

But it doesn't make it any less true.

The goal in this case is back to Relative Conservatorship. That means that CPS wants to place the children with a relative permanently. (It's called PMC in Texas. That stands for Permanent Managing Conservatorship.) Mom will retain her parental rights, but she will not have custody of the children and her contact with them will be limited (based on how the PMC order is written at the hearing). It is my job to support that goal. Right now, Russell's grandparents are the only relatives that CPS is considering. I will do what I can to make the transition between my home to theirs as smooth as it can be. That's one reason why I asked to have a meeting with the grandparents to go over Russell's special needs.

The meeting ended about an hour after the lawyer arrived. When it was over, the lawyer started to take off right away. I stopped her and asked if I should have the kids packed up and ready to leave next week after court. Her eyes bugged out. She informed me that no one is recommending a placement change yet! I was relieved!! Incredibly relieved!!

Since this meeting at my house, court has been held one more time. I honestly don't know what happened at it other than, as far as I know, nothing changed. The cherubs still visit their mother two times a week in the CPS office for a three hour visit each time. They also have a two hour visit one time a week with the grandparents. Bopper has fully assured me that she will let me know ahead of time when things will change. I really do need to trust her more. She has told me all along that she will let me know if/when CPS recommends to the court for the grandparents to actually get custody.

Most likely they will offer unsupervised, weekend visits to the grandparents before that happens. Again, Bopper assures me that she'll let me know in advance when CPS makes the change to the visit schedule.

So we're all in a holding pattern. Bopper tells me that the final hearing in this case it to be held in May. The pre-trial will be May 5 with the final hearing on May 16.

In the meantime, I get to love on the babies and do what I can to support the grandparents in their attempt to gain custody of the cherubs.