Wednesday, January 17, 2018

Taking a break

We take a break between each and every placement. We always have. I've seen some parents say, in support groups online, that they'll say goodbye to one placement in the morning and they'll welcome a new one in the afternoon.

I could never do that.

I think it's important to take a break in-between placements for multiple reasons.

1. It gives our family a chance to regroup and reconnect as a core unit of five.

Every time we add children it changes the dynamics of our family. There's more work. There's more chaos. There's the drama that IS foster care. Often bedrooms get shuffled, the living room gets rearranged, and the whole house changes to meet the needs of our new guests. It's a physical and emotional change of epic proportions.

When cherubs leave, I try to put things back. We put away the toys, clothes, and whatnot from the last placement. I clean a little. We do things that we couldn't (easily) do with the foster kids. When Whiz and Rex left, the first weekend possible we took off for Six Flags. No babies meant long car rides weren't a problem. There were no naps to worry about. We could stay out as late as we wanted.

This is important for me and for the "forevers". They invest a lot as foster brothers. They need a chance to feel what it's like as just our core unit for awhile. We're not always going to do foster care. The boys need to continue to make connections, separate from the kids that come and go, with each other.

2. It keeps me grounded.

I know that I sometimes get caught up in the title of "foster mom". I surround myself with not only my drama...but I am friends (online) with other foster moms and I absorb their drama. I am in support groups that I will get too entangled in. The title of foster mom takes on more than it should.

By taking a break, I am forced to let go of that title and any entitlement that I might have tried to think comes with being a foster mom.

As a foster parent I am caring for OTHER PEOPLES' children. It is insanely important that I remember that at all times! These are not my children. I am not entitled to them. I have a role to fill as a temporary care-giver.

I'm not even "in this" to adopt for the most part. And with my last placement, I most certainly did not want to adopt in any way shape or form.

But I still get too caught up in the title. So by taking a break I let go of that title for a little bit. When people ask how many children I have, I only answer three. Sure, I can talk about foster care. But I try to not make it be the first thing that pops off my lips. I try to reestablish who I am as me, Cherub Mamma. Not who I am as a foster mom.

3. It keeps things in perspective.

When I step away from foster care for a month or two, or even longer, it also helps me let go of the stress that I absorb from The System. Foster care is seriously jacked up. My blood pressure can rise when I think about traveling with foster kiddos and getting permission from the State. I dislike some caseworkers. Thinking about them makes the hairs on the back of my neck tingle. I can get so worked up thinking about the kids that really need foster care...and how they are sent home (or to relatives) where they are not safe....and the kids that do not need Care that languish in The System for no good reason.

When we take a break, I do a better job of letting go of all the negativity. I let go. I reestablish who I am separate from foster care. When I think about taking a new placement I think about my role as a temporary care giver and how I can make a difference. I almost get a little pollyanna about it all. And that's OK. By taking a break to recharge, I'm better able to stay focused with the real goals of foster care...not anything that is actually my own agenda.


Whiz and Rez left 1.5 months ago. I don't know how long this break is going to last. Our licensing agency still hasn't redone our home study. I don't know when that is going to happen. I've tried talking to the lady from the home office, in Houston, a couple different times. Her schedule and ours did not coincide in the month of December. She has to meet with every single member of our family separate and she has to observe us all together for at least 20 minutes. (With two teenagers, one young adult, and two working adults -- we are rarely all together anymore. And we almost never know ahead of time when we're all going to be together due to erratic work schedules and extra-curricular activities.) Our new licensing agency blatantly plagiarized our home study from our first licensing agency. They have to correct that. And until they do, we won't be allowed to take any placements.

I've stayed busy cleaning the house. I've organized and purged. I want to have a garage sale.

TT has been working hard with his case worker from the mental health clinic. She is nothing short of amazing and he has made tremendous progress. I knew we wouldn't add to our family as long as TT was (basically) in a state of crisis. Things are far from perfect. But I'd say he's much more stable now.

Herman and Bart have leveled off a bit, too.
(I've got three very VERY very intense kids.)

We have reconnected well as a family though. This break was very necessary. As awesome as Whiz and Rex were, they also put a huge stress on top of things that were already pretty stressful. Their developmental delay and the crying and tantrums and difficulties that came with that did a number on all of us. I honestly do not miss them even one little bit.

I'm ready to take new placements. I can tell because I've gone on to the Texas Adoption Resource Exchange website to look at kids that need adoptive homes. There's an 8yo little boy with his 9yo big sister that would be a great addition to our craziness.

But right now I'm not doing anything about that. Not having a current home study sort of stops me in my tracks. (Whew!) Hopefully my agency will contact me soon about updating things. Then we may, or may not, jump back into foster care. We may, or may not, inquire on kids needing a permanent home.

I honestly don't know what's going to happen next. I'm taking all this one day at a time. I'm 100% OK with that!! I need this break. It's been good for all of us.

Wednesday, November 8, 2017

foster care did something right - court recap

I left for the courthouse at about 10:15am with the babies. I don't live that far away. I had plenty of time to load them into the stroller, go through security, and walk over to outdoor waiting area next to the CPS courtroom.

As always, there were many families outside in the covered waiting area. Some parents seemed upset. Others were speaking with lawyers. There is zero amount of privacy. It makes me uncomfortable every single time I have to go there. I hear things that should be said in the confines of a lawyer's office - not out in the open for all to hear. I seriously hate everything there is about court.

After waiting for some time, our CPS worker came over to talk to me. She admitted that she was very, very nervous. (Never a good thing in my book when one of the most important decision makers is sick to their stomach about doing their job.) The worker also volunteered that the babies' mom had a warrant out for her arrest. She seemed to think that maybe Mom and Dad wouldn't come to court. When I asked what the warrant was for, the CPS worker admitted that she didn't understand what she had been told about it and she didn't know.

I gave the CPS worker a copy of the medical history request I wrote awhile back. She said she would go over it with her supervisor. She even mentioned something about bringing it up in court.

A couple minutes later Mom and Dad arrived on the scene. They immediately came over to the babies to say hi. I left the babies in the stroller. There's NO way I could let them out and get them back in without a fight. And if I wanted to be in the courtroom, the babies would have to be in their stroller. It was weird. But it was all that could be done. Waiting outside a courtroom for a serious legal hearing isn't exactly time to have a healthy visit with two babies.

A sheriff and his partner came over just a couple minutes later and began the process of arresting Mom. I had to turn the stroller around so the babies couldn't watch. Mom just started crying, but I didn't know if maybe the reaction might get stronger and not be appropriate for the little ones to watch.

I think it's wrong that Mom was arrested prior to her CPS hearing. As one of my online friends put it, it's unacceptable and prejudicial! Even though it's not safe for these babies to return home right now, having Mom in cuffs for a different charge hardly keeps things fair for her when she was there to address the CPS issues. I looked things up online - the arrest yesterday was completely unrelated to her current CPS case. They could have waited and arrested her following the CPS hearing if it was absolutely necessary. As it was, they put her in cuffs and took her into the courtroom. I didn't see her again. Dad came over to the boys several different times before the case was called. It was very awkward. He was so upset.

I stayed in the outdoor waiting area because Whiz and Rex kept taking turns crying. I assumed - silly me - that their lawyer would come visit with me prior to court. Legally, she is supposed to meet with her clients before each hearing.

The lawyer never came.

Then I realized that Dad was gone as well. The case had been called and we were left outside. I was frustrated. But I knew that I wouldn't have heard anything if I had been IN the courtroom anyway - what with the babies fussing and all. They would have excused us.

I couldn't leave. We waited outside. I paced around and pushed the stroller in circles. I knew I had to stay until it was done and CPS officially dismissed me.

It didn't take too long. CPS came out and said that the boys would be moving to California. The worker admitted to not knowing much, but figured it'd take about two weeks or so to get everything in order. That's really about all I heard. I don't think she mentioned anything about the medical history information I wanted.

The boys are still going to be in foster care. The aunt and uncle aren't getting PMC (permanent managing conservatorship) right away. I don't know if the State is even going to ask for termination. Adoption might never happen. But, that won't involve me. The boys are going to California and the next hearing is set for sometime in January.

The babies' lawyer came over to see the boys. She smiled at them and pet their hair. I gave her a copy of the medical request letter. She basically blew me off. She mumbled something about Mom never agreeing to be tested during her previous cases.

There was some back and forth conversation between me, CPS, Dad, and the babies' lawyer. A visit has tentatively been set up with Dad for this Sunday. I have no idea if it will really happen or not. I think Dad is homeless. Mom is in jail. Dad might be unemployed. He has no phone. His life is crumbling under him. And he just lost his kids. He was pretty upset.

As I was leaving the courthouse, I spoke briefly with Mom's lawyer. As much as I dislike this lawyer (she represented Daisy and, IMO, is responsible for sending Daisy back home the first time and ultimately has a role in the death of Dandelion)...this lawyer was upset and she showed her human side. She was frustrated that Mom isn't doing anything to be able to keep Whiz and Rex. This lawyer has represented Mom multiple times (in all her other CPS cases). She said she's been nice to Mom. She said she's been angry with Mom. And still...Mom keeps abusing alcohol and continues to stay in the abusive relationship with Whiz and Rex's dad.

Foster care is ugly stuff y'all. People don't do their jobs. Parents get screwed over regularly. Kids get screwed over even more often.

But this time - as messy as it all was - the State did something right. ICPC went through reasonably fast. They aren't waiting until TPR to move the boys. Maybe that's because they arrested Mom prior to court yesterday and that was the final straw for Mom and Dad. I don't know. But Mom and Dad agreed to let the boys go to California. Whiz and Rex cannot safely live with their parents! They just can't. And as tragic as it is to watch a family come apart at the seams - I'm glad these boys have family to go to!!

Auntie Carla is super excited about the babies coming. We've spoken on the phone and we've been texting a lot. I'm going to do all I can to prepare her for the arrival of the boys. She's ready. It's so awesome to get to be a part of THIS. Sadly, I have to watch the boys' parents fall apart. But I do get to watch the boys be welcomed into safe and healthy family that loves them and can't wait to have them.

I don't know if the State is going to fly me to California to help with the transition or not. I told CPS a long time ago that all they need to do is buy me a plane ticket and I'll fly with the worker to help transport the boys. If CPS has half a brain...they'll do it. I can't fathom how Whiz will act in an airport and on a plane if he has to be transported by strangers and then dropped off at a stranger's house. The trauma would be so bad!!

I'll know more as soon as CPS figures out how they're going to do all this. I have no idea how long it will really take. A vindictive worker moved Dude and Dolly from my house to Dallas with six hours notice. A decent worker took a month to move Pumpkin from my house to El Paso. I suppose the two weeks that CPS seems to think this will take is probably about right.

I'm looking forward to a home with a lot less crying in it. We've talked things over and we're going to keep our license open. We'll take a break for a month or so and then open back up for a new adventure probably after the first of the year.

Friday, October 27, 2017

preparing Auntie Carla

Auntie Carla and I usually text back and forth once or twice a week and/or any time something significant happens with the boys or in the case. If it's really important, I call her or she calls me. We use Facebook Messaging to video chat about once a week. (The plan is to up the frequency of video chats about a week or two before the boys move there.)

One of the things we do, obviously, is talk about the boys. She asks questions about their preferences. I talk to her about their developmental delay and the things we're doing to help them.

I honestly believe that Auntie Carla (AC) is going to be a fabulous new mom for these boys. I feel she does understand what she's saying "yes" to. I feel she will do everything in her power to put early childhood intervention services into place for the boys immediately after they move in.

When we're talking about the delays, she asks excellent questions. She gets it. She's prepared for it....all the way to understanding that she might be parenting these boys through adulthood if they're unable to live independently. (Of course no one has any idea how delayed they will be forever. However, we've talked a lot about FASD and the permanent implications that disability brings.)

Then there are text conversations like the one this afternoon that catch me off guard.
AC: Do the boys like cheezits?
Me: Yeah. They eat crackers "better" than they used to. They don't get thrown on the floor as much now. LOL
AC: Which crackers? We eat just about everything.
Me: I offer Goldfish. I offer pretzels. They both seem to like those sandwich crackers with peanut butter in the middle.
AC: mmmmmm....LOL
Me: Soft cereal bars go over better than crunchy ones. They both usually eat string cheese. I often have to cut it into small pieces for both boys tho. Whiz doesn't always take bites.
Sandwiches are still pretty much rejected. Tho Whiz ate a taco for breakfast the other day. That really surprised me.
I do a LOT of fresh fruit for snacks. Everything (except bananas) has to be cut small tho.
AC: I'm going to love taking them to the grocery store to get them their favorite stuff.
...insert long pause from me...

There was so much I wanted to say. I wanted to holler, "I've told you and told you they don't act like they have favorites of anything. They're weird little eaters. We've talked about this a ton of times! And I've told you they don't like 'public'. They get overwhelmed very easily. Going shopping for groceries with them is not fun in any way shape or form."

I decided to not mince words.
Me: They're not a fan of the grocery store. LOL And they can't answer questions so it's unlikely they'd be able to point to their favorites. Neither boy "points" much yet. But I'll certainly give you a list of their accepted foods. :)
AC: LOL...I figured it's going to be a lot of "yes or no" questions and pointing
Me: Nope. They can't answer yes or no questions yet. Neither one can at all. They don't comprehend that stuff yet.
AC: LOL...oh well. We'll have fun. Do they get excited about fruits?
Me: Whiz is almost starting to answer questions where he can choose between two known items. Sort of. It's an emerging skill. They don't get excited about much food at all. Tho Rex will show preference more than Whiz. And what Whiz seems to like at one meal - he'll reject the next. (Typical behavior for the most part.)
AC: OK. It's a start.
Me: It's still hit or miss at every meal for me. I never know if they're going to eat something or not. LOL I truly want to serve them food they like. But it's hard to know what that is from day to day. For example, both boys were hungry this morning. Bananas have been an excepted food for a couple of weeks now. They like dry cereal most days. Whiz ate everything. But it took him well over an hour. Rex ate some cereal and refused the banana.
And then I stewed over it all day long. I know I shouldn't have. It's a waste of my mental energy. I'm doing the best I can. I tell her what I know to be truths. She video chats with them on the phone. We've discussed how Whiz almost has a script for every phone call based on the first phone call he ever had with her. He points to his shirt. He blows kisses. He says "hi" a lot. He tries to kiss the phone. Wash. Rinse. Repeat until I hang up or force him to do something else (like point to body parts or I just talk "for" him).

Surely she's figured out that Whiz has almost no understandable words. Surely she knows that's a big sign now that he's 28 months old. He's supposed to be starting to string words together. He can't even say the word "bus" or the word "hat". Surely she can tell by watching Rex that he's not playing the way a typical 17mo child would play. He doesn't even stop to look at her in the phone. He doesn't even see himself in the corner of the phone. (When he looks at a mirror he's still unaware that it's him.)

Tonight, during our video chat, Whiz got super wound up and started doing his dysregulated giggle. I used that opportunity to explain to her that it's not a "normal" giggle. It means that if you don't redirect him, he will continue to get more and more out of control. It won't end in a tantrum necessarily. But it's certainly not part of normal, healthy play.

My kids all know the giggle. I stopped redirecting it for awhile to see if maybe I was overreacting to the giggle. My boys noticed it even more and said stuff about it to me. Everyone in the house now knows to simply shut Whiz down when he starts getting wound up with the giggle. If he doesn't redirect never ends well. I also have to pay super close attention to when Whiz has the giggle going and how he's interacting with Rex or our dog, Bella. The giggle often means that he's getting ready to get physical with Rex or Bella in very, very, very concerning ways. (open hand slapping, climbing on top of them, choking Rex, or other inappropriate/dangerous things)

I know that Auntie Carla loves these boys and is committed to them. I trust she's going to go above and beyond to meet all their needs. And really, she isn't truly going to understand their delays until she meets with them and starts working with therapists who can help her learn what they should be doing compared to what they are doing. I imagine her first evaluation with each boy will be quite eye opening.

I know that the home study for Auntie Carla and her family was sent from California to Texas on October 18. I know that we have court next on November 7. The hearing a pretrial. The TPR hearing is currently scheduled for sometime in December. The State has new evidence proving how unsafe the home environment is with Mom and Dad. Thankfully said evidence is written and powerful. I hope it's enough to protect these boys. Lord help everyone if they go back home because the State screws up.

I still don't know when the boys will go to California. I know the parents will be asked if the boys can move at the next hearing. The State doesn't believe that the parents will agree to the placement change. (They still think they're getting the boys back.) I don't know if the judge will overrule the parents' wishes or not. (My gut says no.)

My gut says that these boys will be with me until TPR happens. And since the case isn't even a year old yet, and TPR takes forever, they could still be here awhile.

Auntie Carla is getting anxious. She wants the boys with her. I won't lie. I want them with her, too. I'm 'bout worn out. I'm ready to watch these boys grow up via pictures on Facebook and go back to a house with a whole lot less crying in it.

Saturday, October 21, 2017

requesting information from CPS

Below is the first draft of a letter I'm penning to decision makers over Whiz and Rex. Let me know what you think and how I should word things if changes should be made.

Who should I send this to...
CPS caseworker and her supervisor?
the lawyer for the boys?
the judge?
all of the above?

When CPS came to my house this week, the worker acted like I had never requested this information. She then called her supervisor to see if getting this information would be a breech of confidentiality. I say it's not. I say this information belongs to the boys. They have a right to know if their mother drank or used drugs while she was pregnant with them.

Or do they? Where does confidentiality for the children start? It's killing me that CPS has this information and they may keep it from the boys forever.

I welcome all input and advice. Part of me wants to keep writing. Explain FASD. Explain why I think the boys are permanently affected. Mention that Rex has borderline microcephaly (depending on what growth chart you use). Mention that both boys have heart murmurs. Mention that two older siblings have the Dx of autism...that is likely misdiagnosed FASD. Mention the behavioral issues that concern the speech therapists and most anyone that spends any time with Whiz, ever.

I have so much to say. But I know a short letter is better received. What would you say?


I’m writing this letter to request that someone in CPS look up prenatal medical history for the two boys that I currently have in my care. Whiz and Rex are both developmentally delayed. They were seen by a developmental pediatrician with the hopes of diagnosing or ruling out FASD (Fetal Alcohol Spectrum Disorders). However, because I, their foster mother, have no “official confirmation” that Mom drank while pregnant, it is difficult for a doctor to diagnose FASD.

Unfortunately, the doctor that saw both boys on September 8, 2017, did not do a thorough job. Despite this doctor working specifically in a clinic designed to diagnose problems like this, Dr. DidNotCareOneBit didn’t even take the boys out of their double stroller to perform her evaluations. She took one look at the boys and said they do not have FAS (Fetal Alcohol Syndrome – the full syndrome that presents with facial dysmorphia).

Dr. DidNotCareOneBit did not negate any of my developmental concerns. She gave Rex the diagnosis of “Global Developmental Delay” because he is behind in several areas. Whiz was given the diagnosis of “Developmental Language Delay” along with a diagnosis of “Temper Tantrums”. She indicated that both boys would need to be evaluated again, when they are older, for cognitive delays and possible learning deficiencies. The doctor did not rule out alcohol related neurodevelopmental effects for Rex because I told her that Mom drank while pregnant with him (confirmed unofficially from a relative). I did not have any confirmation at all for alcohol use while Mom was pregnant with Whiz so it wasn't ruled out or diagnosed.

This case is moving toward relative adoption. Once these boys leave the custody of the State of Texas, there will be no way for their prenatal medical history to follow them. Future professionals would benefit from knowing whether Mom drank while pregnant with both Whiz and Rex. It would help them be able to make a more accurate diagnosis and treatment plans would be more appropriately tailored to the boys’ needs.

CPS has this information in their files as Mom had open CPS cases during both pregnancies. Whiz was born on 07-02-2015. One only needs to search through any alcohol/drug tests taken during the time frame of nine months prior (approximately 10-2014 to 07-15) to see if any resulted in a positive test. Rex was born 05-27-16. Whiz’s case was open during this time. Checking records between 08-2015 and 05-2016 would help establish if there is confirmed alcohol consumption or drug use while Mom was pregnant with Rex.

Both boys are significantly developmentally delayed. Understanding why will help as they get older. Knowing whether or not they were exposed to alcohol and/or drugs in utero will help future doctors diagnose them properly. It is likely that these boys will need services as they enter school. A correct diagnosis will better help them receive all the services they may need.

This information belongs to Whiz and Rex. It is their medical history. It would be beneficial to them long-term if CPS could look it up and add it to their files. Please let me know if you need any additional information from me.

Friday, September 29, 2017

the day I played a compounding pharmacist

Rex has a fungal diaper rash that will NOT go away. I'll spare you any pictures. But imagine a spot in his diaper area about the size of a large thumb print that is almost always bright red. I've been treating it for over two months now. At every diaper change I apply clotrimazole cream and then I put a barrier cream (either generic Desitin or A&D ointment) on top. This is all per orders from My Genius Brother (a family practice doctor). Rex's own pediatrician has seen the rash and concurred that it is indeed fungal. (My Genius Brother lives several states away so he was working off a verbal description from me.)

The rash has never gotten "bad". That's because I treat at every single diaper change. If I miss treating, for any reason, the redness gets a little bigger and a whole lot brighter.

My pediatrician (well...the NP at my pediatrician's office) was going to call in an oral Rx. My Genius Brother said it was time for me to get his magic topical Rx. I decided topical was probably better than oral - especially since my brother is a genius and all - so I had him text me the "recipe" and the NP called it in for me.

The compounding pharmacy was going to charge over $50 for a small container of Dr. Dork's Super Magic Butt Paste.

Now, I love Rex and all. But $50 out-of-pocket for butt paste?! (Medicaid doesn't cover most compounded prescriptions.) I committed to doing a better job of treating with the OTC stuff that I had and making sure that the barrier cream I applied was thick and covered everything. (MGB said that the reason the OTC stuff wasn't working was because the barrier cream wasn't working well enough. He also suggested that I switch diaper brands two weeks ago. I did that and got really good at covering Rex's rear with cream.) I declined on the Rx.

The rash remained. It didn't get better. So I went shopping on Amazon.

This is where it gets a little funny and awfully embarrassing.

I've used Dr. Dork's Super Magic Butt Paste before. There was a small period of time, when TT and Bart were little, that I lived in the same house as my brother and his family while Mr. Amazing worked at a temporary job in North Dakota and then at another temporary job in South Carolina. My brother had some for his kid (the same age as Bart). I borrowed it. The Magic Butt Paste works really, really well.

So I should have been thinking when I wrote the recipe down. But...I wasn't. The recipe calls for:
15 grams of ostomy paste
4 oz. of zinc oxide
30 grams of nystatin powder

I ordered all the ingredients off of Amazon.

 I started to mix the recipe together. I put the ostomy paste in first.
Then I started adding the zinc oxide powder.
Then I realized I hadn't really thought things through very well.
15 grams of the paste wasn't going to be enough of a base to absorb 4 ounces of zinc oxide powder and 30 grams of nystatin powder.
(hangs head in shame)

But...I had been to the Wal-Mart (said with a redneck accent) and had just bought a new tube of generic Desitin. Four ounces on the nose. I moved the ostomy paste to larger container, squirted in the zinc oxide CREAM and added 30 grams of the nystatin powder.

Now things looked right. I've got a container of Dr. Dork's Super Magic Butt Paste. The ostomy paste is the magic ingredient as it keeps the paste in place so the nystatin can do its job. Here's to hoping Rex's hind end looks better in a few days and I can stop getting my fingers all nasty at every diaper change.

Now...does anyone have a good recipe for homemade Desitin or sunblock? I've got a lot of zinc oxide powder to use up somewhere.

Sunday, September 24, 2017

Whiz got a minor bruise

Not everyone knows what it means to "document document document" when they become foster parents. Sometimes I share emails that I send to the decision makers over the case. This one went out tonight following a visit, today, where only Dad came. I sent this to both the CPS case worker and my licensing worker. (Interestingly enough, the CPS worker observed some of the visit today. She might have even been there when Whiz took his fall.)

The first thing Dad did, when I picked the Whiz and Rex up from their visit today, was point out a small bruise on the side of Whiz’s face.

I need it on the record that this bruise did not occur while Whiz was under my watch.

Dad told me that Whiz fell during the visit today. However, he indicated that Whiz did not get the bruise today. He didn’t seem concerned about the bruise. But he also didn’t want to take responsibility for it happening. I didn’t say much. I just let Dad do the talking.

I did catch the visit monitor on the way out to my car. She said it’s in her notes already that the fall happened during the visit and that she saw Whiz hit his face. She was also going to make a note that Dad tried to say it didn’t happen during the visit.

Again, the bruise is minor. I’m quite confident that it happened during normal two-year-old play at the visit today. But it was not on his cheek prior to the visit.
Also, Dad told me that he’s behind on his cell phone bill. He wanted to tell me to just plan on a visit next week at the same time and place. I reiterated to Dad that all visits must be scheduled through "third party monitoring company". Dad said he wasn’t sure what he was going to do if his phone got turned off. I indicated he could call you, CPS caseworker, to schedule visits as well.

Let me know if you need any additional information.

Thank you.
Cherub Mamma
(phone number)

Friday, September 8, 2017

at the developmental pediatrician

We got up early this morning. I fully packed everything last night so that Whiz wouldn't see me packing any bags this morning. I didn't put my shoes on either. He was quite aware life wasn't "normal". He wanted to freak out a little. But I made his favorite breakfast (fried eggs) and he ate it without issue.

Rex wasn't as cooperative with his breakfast. So, I ate his scrambled egg for him and he decided Greek yogurt would be OK. (Some days, Rex just doesn't want to have to chew food.)

We were on the road to the hospital by about 6:15am. Our first appointment was at 9:20am.

The ride to the hospital was uneventful. There was a little crying. But not more than I expected. I ignored it and turned the radio up loud. They stopped crying. I know for sure that Whiz even slept a little.

The appointment started on time. Two nice nurses walked us back to an exam room and took vitals on both the boys. They each allowed their blood pressure to be taken. I felt so good about things. I was ready for some answers.

I'm not sure exactly what I expected to happen with the doctor. I had hoped for a little shred of validation. I wanted the doctor to at least say that the things I'm seeing "could" be because of FASD (fetal alcohol spectrum disorder). I knew that, most likely, the boys would not have all of the required facial dysmorphia. But the facial features in kids diagnosed with FAS (fetal alcohol syndrome) are only apparent in less than 25% of all children with some form of FASD. The boys have other markers. Significant markers.

Instead, the doctor, Ms. Branson, walked in the room and introduced herself and the team. There was one other doctor and a resident. Ms. Branson made mention right away that this was a single visit and we wouldn't have to come back. Then she turned to look at the boys in their double stroller. She exclaimed, "They don't have FAS."

From there...I didn't quite know what to do. She hadn't even started the examination and she had already made up her mind based on facial features alone. I was disappointed but I tried to not show it. Ms. Branson backtracked a little and said something along the lines of examining them anyway.


We were in a small conference room. The doctor brought in about 5 small red cube blocks, a fine motor toy with dowels and rings that fit on them, a three piece puzzle, and maybe one or two other things I didn't notice.

Dr. Branson didn't even take the boys out of the stroller for her entire diagnostic evaluation. 

The other two members of the team asked me very generic questions about the boys behavior and development. When I felt like the answer I needed to give was too complex for the simpleness of the question, they didn't ask for more details. They didn't want me to elaborate on much. They asked me very few follow up questions. It felt so superficial. 

Now, they had gone through ALL the documents I sent ahead of time. So these people had read through the ECI evaluations and had looked over the medical records I sent. So that was good. But they didn't seem like they wanted to know much more.

Everything was done in less than 45 minutes for both boys. The team left the room to discuss the "findings".

-- commence giant meltdown from both babies -- 

I fed them a snack while we waited. I got out other toys. I tried so hard. But by the time the doctor came back to tell me the "results"...Whiz was completely freaking out. If he hadn't been strapped in the stroller, he would have been throwing himself all over the place and probably banging his head on the floor. It was bad.

Nothing I did could redirect. So the doctor quickly talked over them.

She stood firm in her diagnosis that neither boy has FASD. 

Whiz has the primary diagnosis of "developmental language disorder". Under that he also got diagnoses for picky eater and temper tantrums.

Rex got the primary diagnosis of "global developmental delay". Under that it is also listed that he had exposure to alcohol in utero, prematurity (born at 35 weeks), family disruption due to child in foster care, and feeding difficulty.

I find it odd that Rex has a Dx about foster care and Whiz doesn't. Doctors make no sense to me sometimes.

Both boys are to continue ECI services including speech and occupational therapies. (I called our coordinator on the way home. She is going to schedule an occupational therapist to come and evaluate each boy so we can add weekly OT.) I am to consider adding behavioral therapy through ECI for Whiz to address his tantrums. I can consider feeding therapy for Rex.

Dr. Branson did say that given the reported history of alcohol exposure for Rex, she can't rule out alcohol related neurodevelopmental effects. Ultimately, she thinks Rex will need a comprehensive psychoeducational evaluation to assess cognition when he's a little bit older. She said more than once that she is more concerned about Rex than Whiz. She mentioned "intellectual disability" more than once.


Ultimately, everything that happened...or didn't doesn't change anything. These boys didn't need any new official diagnoses in order to keep receiving services. My goal of getting the FASD diagnosis today was more for long term help.

If Auntie Carla needs a diagnosis for either boy as they get closer to school age, she can have them evaluated again. Nothing this doctor writes can prevent them from being diagnosed with FASD when they get older.

I'm going to TRY and see if I can locate the CPS worker that handled Mom's very first CPS case with her three oldest children (Rex and Whiz's half siblings). Their case was open when Mom was pregnant with Whiz. There is at least one person, if not more, in CPS that should be able to confirm that Mom was drinking when she was pregnant with Whiz. There is confirmation that Mom was a heavy drinker during her pregnancy with Rex. So that's already on file. And really, Auntie Carla could just tell the next doctor that she believes Mom drank while pregnant with Whiz. We have NO reason to believe that she didn't.


Auntie Carla and I have been texting and talking a lot lately. I have such a peace about these boys going to live with her. She really is ready. She's appropriately optimistic about it all - yet she's completely grounded in her understanding of how big of an undertaking this is going to be. We've discussed the fact that lots of kids with FASD are unable to live fully independently. She is going into this with her eyes open. When I called her today and told her the official Dx of FASD wasn't given...she understood. She knows that they are still significantly behind with their language development. She knows that a diagnosis of global developmental delay isn't a minor thing.


I have to type up an overview for CPS. The doctor/nurse somehow managed to combine Whiz's records with Rex's on the printed overview they gave me before I left today. So what I have in my hands right now is perfectly worthless. (Even though I know what info applies to each kid - it would completely confuse CPS.) The doctor's office is typing up new forms to mail to me. Complete information, with more details, is going to be sent directly to our regular pediatrician. I'll get copies of that, eventually, as well.


I'll end this with pics of Whiz and Rex. Supposedly Rex has one of the facial markers because he has a shallow philtrim (area below the nose / above the lip). But, based on a 4-diagnostic ranking...a score of only 1, for the shallow philtrim, means that the level of expression of FAS facial features is none. 

I can't show you their eyes. The doctor says that Rex has the epicanthal folds. Apparently that doesn't mean anything. And if I understood Ms. Branson correctly, Rex is one percentage point away from having microcephaly. If his head circumference were just a wee bit smaller, that would be a marker as well. Both boys have heart murmurs...but she didn't relate that to FASD at all. 


At least the doctor didn't negate any of my concerns. Everything was addressed and noted in their files. Both boys have significant developmental delay. They just don't have the Dx of FASD...yet. And I guess that's OK. It just felt like today was a colossal waste of time. She didn't diagnose anything that hadn't already been diagnosed.