They’re sleeping sunny-side up tonight, and in a different bed.

They’re sleeping sunny-side up tonight, and in a different bed.

I finally let Sandy’s foster care case worker know that I have a pro bono attorney. I was soooo nervous to tell her. I couldn’t read her reaction.

I may have to do one of those 365 days (or nights rather) of the girls sleeping next to one another.  

The newest thing is that they completely switch beds after I put them down.  It doesn’t matter which bed I put them in, or if I separate them or let them start off together- they have to assert their independence to a new location.

I may have to do one of those 365 days (or nights rather) of the girls sleeping next to one another. The newest thing is that they completely switch beds after I put them down. It doesn’t matter which bed I put them in, or if I separate them or let them start off together- they have to assert their independence to a new location.

Sandy

Literally once a week something happens, be it a meeting is called or someone mentions how great things are going and my stomach drops and I have to ask again, if the “goal” is being changed. In other words, did the plan change and now Sandy is going home with family? There’s always hesitation because nothing is set in stone. It’s such a crappy way to live.

I’m meeting up for dinner with 2 close friends I’ve had here in the city for 10+ years. 2 of us now have 2 kids each and 1 doesn’t have kids. I keep thinking “Wait, I’m one of the ones with 2 kids?” It’s so strange still.

Nooooo!  More summer, please!

Nooooo! More summer, please!

I’ve gone from being anti-television to being so, so soooo grateful for it at 5:30am on the weekend.

And randomness part #2: I always thought Bert from Sesame Street was just a grumpy bump on a log, but clearly Ernie is a an impossible jerk.

Weeeee!

This morning Asia came in bright-eyed and bushy-tailed as always and asked “Have you seen Clementine play soccer?”

Uhm, no. Especially since she doesn’t walk yet. But Asia sat Clementine in a corner facing the wall and gave her a ball and it was
The funniest
Thing
I’ve ever seen.

Last random intellectual disability fact:

Men with Down Syndrome are infertile. So no need to track them down for a paternity test (well, technically there have been 3 confirmed cases of Down Syndrome fathers in the world).

Oh, and the 3rd problem to my last post

3. The other unspoken issue which becomes a barrier, is the fact that most people agree that individuals with intellectual disabilities who can’t independently take care of their kids, shouldn’t have a baby to begin with. But of course, once the baby’s here people’s beliefs don’t matter much.

Where the baby came from DOES need to be addressed. Is the mom consenting status? (There’s an assessment for this, I do them all the time).

If yes, it’s good- get birth control training specific to disability (e.g. Don’t demonstrate a condom on a banana unless you want them to put a condom on a banana before sex).

If mom’s not consenting status is the father consenting status? If not, someone neglected these individuals and they need round the clock support. Find out their guardian stat. Make sure guardian doesn’t also have intellectual disability. If they do (very common) must find guardian for them- may need to be a non-profit.

If mom is not consenting status and dad is you technically have a sexual assault that needs reporting. It really depends. Maybe the dad was unaware of mom’s disability. Either way you need someone from an OPWDD program to help you sort it out (sometimes I can train mom to be consenting status specific to one person and keep their sex life legal).

Then there’s incest among family members who all have intellectual disabilities. Also common and boy people don’t like to talk about it so the babies keep coming…

Another common one I see is a group of friends with intellectual disabilities who all live in the same housing project, all were in the same special ed classes, dropped-out, never got sex ed, and are making babies that end up in the system. Which is cool, but they need support, maybe turn an apartment in the complex into a group home and don’t wait until the kids are school age before getting them support as well.

Something tells me that none of these conversations are happening in the NYC child welfare system of a bazillion departments and employees. I wish they would.

Now that I’m back at work….(with individuals with developmental disabilities)

I have a renewed “what-the-fuck” over the fact that so many parents, with kids in foster care, have a developmental/intellectual disability (formerly known as mental retardation), and it’s because of their disability that the children are in foster care, yet- it’s purposefully ignored. 

On a couple of instances now I’ve been in meetings where the parents’ intellectual disability is read out loud off of their medical forms (or whatnot) but no disability services or modifications are offered. And there’s no acknowledgment of the extra challenges. Like, they’re given a piece a paper and asked to write something down or told to follow a map to a program.  Most of the FOSTER parents I’ve encountered can’t write nor read a map (not because of a disability but for whatever reasons).  Then we say that the parent is refusing services.  Or, if they do go to a class, they learn absolutely nothing because it’s not taught with the support they need.

Why?  I think it’s 2 problems.  First, stigma.  Down Syndrome seems to be the only intellectual disability we accept and support.  It’s a more undeniable disability in that people with Down’s have identifiable physical features.  However, most people with intellectual disabilities don’t have specific physical characteristics.  Their disability might have been caused by not getting enough oxygen during birth, brain injury after birth (but before age 21), lead poisoning, seizures, and dozens of other ways.  But the disability is real.  And not talking about it doesn’t make it go away and it’s definitely not the more sensitive thing to do.  In fact, it adds to the shame.

If a parent were blind, a case worker wouldn’t just hand them a map and wave them on their way.  And if a parent were in a wheelchair, I bet most case workers would make sure the classes were accessible.  The same should be done for people with intellectual disabilities.  If they are parents with kids in foster care, the only difference between them and other parents with intellectual disabilities is that they don’t have support.  They don’t have family, or a program or a neighbor adding into their lives whatever thinking process is missing.  Those parents have people around them who are most likely speaking very frankly with the person about their intellectual disability and subsequent challenges.  Someone is in their life saying "Check your calendar, what appointments do you have today?" and "If you spend your money on that, you won’t have money for the baby’s _______."

My Solution: 

1. intellectual disability awareness.  [Say it with me “Intellectual disabilities are real.  The limitations are real.  But it’s okay!  Individuals can still have meaningful, productive lives- even as parents- so long as they have support] 

2. a panel (child welfare loves their panels!) of individuals with intellectual disabilities who are successfully parenting (with appropriate supports) so case workers/attorneys can see that it can work

3. OPWDD services really must be a service plan requirement in most cases. It’s not too late to get someone diagnosed in adulthood. And note, if the family isn’t able to take care of the kids up to now, consider that grandma and other family members might also have an intellectual disability and that’s why the parents aren’t already receiving services. I’ve seen several horror story like situations where ACS has passed kids off to even more disabled relatives (who probably had said support in raising their own kids but family has since died or moved) only to end up with the kids in a bigger mess. OPWDD services are include pretty much the same standard parent services but it’s for life (as is the disability) and modified specifically to the disability (e.g. job training, parenting classes, anger management). 

4.  there really needs to be a day program where parents with intellectual disabilities can take their kids from age 0-3 (until CPSE or Head Start).  Pulling individuals out of their programs to stay home with a home attendant who watches the baby is the worst.  I’ve seen approx 6 cases and am aware of another 10.  In most situations the parent regresses from the isolation, and resents the baby, and wants to get back to day program and their routine.  Not to mention, the fathers aren’t pulled out of their program to go help.  Father engagement would be much higher if the family was together at day program.

The second problem is, that in New York State, it’s still on the legal books that parental rights can be terminated if a parent has an intellectual disability.  My understanding is that it’s almost never used. Instead of intellectual disability- rights are terminated after the generic, unmodified classes are taken and the issues of neglect, abandonment or abuse aren’t rectified.  In this case, NY needs to take intellectual disabilities OFF the legal reasons for terminating parental rights so that defense attorneys can chill out let their client go on the record having received OPWDD services.

My Solution:

Just dump the law like most of the other states have.  It’s useless anyway.

Off my soapbox now!

There's something special between Clementine's brothers and Sandy

  • Clementine's sister (to Runfostermama): Let's have Clementine spend the night.
  • Clementine's brother: Nooo! I want the brown Sandy to sleep over!

All of Sandy’s new found language is blowing my cover. For instance, she often catches me eating chocolate so I’ll give her a small piece. But now, she’s all “MOUTH CHOCOLATE. CLEMENTINE CHOCOLATE!! CLEMENTINE MOUTH!!” and I’m all “SSSHHHH! Clemmie doesn’t have to know!” But it’s always too late and Clementine’s eyes will be the size of saucers and she’ll start grunting like a mad woman.

Clementine’s 30 piece petition for adoption was submitted today.  Very exciting!

Clementine’s 30 piece petition for adoption was submitted today. Very exciting!