This post is about real life with Lulu. It's accurate and it's raw. I don't write this way often at all, because who wants to dwell on the negative? In no way does this writing negate all of the wonderful things that Lulu does or says, or any of the tremendous progress that she has made. She is an amazing girl who is so loved.
Lulu is getting bigger and stronger on the daily. And the behaviors are ramping up to all new highs. My house is tossed on a regular basis. She's busted through my bedroom doorframe, and has destroyed many pieces of furniture in a variety of ways, including bouncing with full force and having accidents on them. She sneaks food, and becomes really aggressive if you try to stop her. Lulu's sleep patterns are wacky at best. She has hurt Annie, John and me on many occasions. She has pretty gross bathroom habits. And she has severe OCD that medication doesn't seem to touch, and instead seems to make worse.
In the very foreseeable future, Annie will leave for college in the fall. John and I will take care of Lulu, each on a rotating basis. And then what? The outlook is scary for me personally.
The entire process is seriously heartbreakingly flawed. Questions are asked of us: Have you tried respite? Have you tried getting comm hab? Periodically Lu does stay at the respite house for a couple of days at a time. But there had really been no in-home respite for quite some time. And the same thing with Comm Hab. The fact is, there is a huge staffing crisis in the state of NY, and the people with disabilities...and their families...seem to be suffering the most.
Have you talked with the school about placing her at a residential school? Interpretation: let's kick it to the school so the school district will pay for it. This is a no go, because she does well at school. There are a classroom of adults who can support her if she has a challenging time. But those supports are not in my home.
Have you taken her to the psychiatric ER (known as CPEP here in my town)? I've taken individuals there before, and I assure you, it's really no place for a child or adult who cannot comprehend the full scope of what's happening. It's a scary place. And it's pointless for people like Lulu.
We've been told to go to the walk in, or to the hospital, or to CPEP whenever anyone is hurt, just to enhance the paper trail. But how can I take into account for Covid when I have two pretty severe autoimmune disorders, and several less severe ones? How do you have someone willingly go to the hospital because they are bruised, but not much more than that... all to have a paper trail?
I've been my little girl's champion from the start, and the system has done well by my girl thus far. And I am so incredibly grateful for that. But when we really need it the most, the doors are slammed shut and barricaded tight.
I'm told that they don't place children. I beg to differ. I've put 4 minor children living in residential placements onto school busses. Then I'm told to consider the very program that the girl in the article was likely sent to. That girl came back after a year, and the cycle started back up. And I hold no hope that it would be a different outcome with my child.
Why can't letters from my doctor, my correspondence, and the pages and pages of documentation from my daughter's Care Manager suffice? Why do I have look out of state for placement? Why are the residential placements in NYS so paltry? Why do they not care about the safety and wellbeing of my child?
WHY IS THIS SYSTEM SO FLAWED?
The decision to have your child move to residential placement is not anything that one comes to lightly. It's the last resort. It's the thing that makes you feel like the most inadequate parent...like you've failed. Intellectually I know this is not true. But man, it sure messes with your heart and your mind.
https://dnyuz.com/2022/06/01/sabrinas-parents-love-her-but-the-meltdowns-are-too-much/
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