Monday, August 23, 2010

Quite frankly, a little pissed.

Perhaps if you've come here for sunny optimism, you should be warned and turn back now.  It somehow turned into one frustrating day with my emotions running high.  For starters, I'm probably over-tired and  over-worked, so I'm sure that helps nothing.  I ate three mini cupcakes (carrot, coconut and some insanely delish flavor I can't even place.) But, I still feel no bueno. Not good. Irritated.  Maybe that's because I'm not really a sweets person.  Perhaps I should have gone for the chips...

Today was supposed to be what I thought was our first Occupational Therapy appointment for Elijah.  The best explanation is probably summed up by saying, I am confused.  Nothing makes sense.  There is no communication and trying to get a handle on it all seems to be above my skill set, at this moment.  The...therapist...person...Susan...showed up today.  A friendly, open woman came in and started by saying, "Well, I know nothing about Elijah, so why don't you fill me in a little." ??  It struck me as a little odd...what exactly does she mean she doesn't know anything about Elijah.  Does she not know he has Down syndrome or does she not know what his favorite color is?  What exactly is she looking for here? So, I start by saying, "Well, Elijah has Down syndrome." She nods and doesn't seem surprised by this information. "He doesn't have any major defects, no heart issues and seems to be in good health.  He's nursing and sleeping well.  My biggest concerns are helping him to hold his head, neck and back up straighter and I am concerned there could be an eyesight issue of some sort, although I can't be sure if it is just a form of a developmental delay, because the vision issues I've noticed do seem to be improving."  What I learned from Susan is that she is not an Occupational therapist and certainly not a Physical Therapist (she held Elijah like she's never worked with a baby before.  He was so slumped forward, I thought he might just take a nose dive into his own lap...poor guy...) When I asked what her actual title is, she said "Child Development Specialist".  So, I asked the next most logical question: What the hell is that??!!   Alright, alright, I didn't actually say it like that out loud, but if my inner voice had a mouth that's what it would have said.  She then told me a handful of times how she's never worked with a baby as young as Elijah.  ??? I asked when she typically does work with babies and she tried to say 5 and a half months, but I could tell by her explanation that she was probably rounding down. I also asked if she'd ever worked with any babies with Down syndrome.  She said she's worked with 3 kids with "Downs" (never heard anyone in the professional arena of Special Needs use that term, but I'm new...), but it sounded like they were about 2 years of age when she worked with each of them.  During the conversation she mentioned being in the business for 13 years, so I did my own math. 3 kids in 13 years does not seem like much to me.  If I had designed 3 weddings in 13 years, I'm pretty sure most people wouldn't take a chance on me to be their wedding designer.  The meeting was a bit of a blur, she didn't do anything with Elijah, but to be fair, I won't judge that since I'm sure there are things to discuss first.  By the time she left, I was feeling pretty pissed.  She said that she is not generally brought in in place of an OT (occupational therapist) or PT (physical therapist), but in addition to them...Great! That would be great....except this was the only person that the Regional Center contact ever mentioned that I would meet.  I assumed it was an OT, because in Eli's original evaluation, the social worker mentioned that he was going to recommend OT once a week.  We were supposed to get the "paperwork" 30 days after that evaluation, but it has been 45 days and nothing. I tried calling the Regional Center social worker to say, Hey I think you might have referred us to the wrong person, but I was greeted by his voice mail:  "It is August 20th and I will be out of the office until August 31st.  Please leave a message and I will get back to you as soon as possible." Hm-m mm. I left a message. Cruella DeVille style.  Here's my thing: My child is doing well "for having Down syndrome". He is by no means setting records in the typically developing world.  He has some delays.  And I am not going to let this system wait until he is so far behind that they have to agree to give him services that can help.  I do believe sometimes more is just more and it's not always helpful.  But, I'm not asking for the world here.  I'm asking for A professional to help me work with my son in ways that are going to help him achieve his potential.  So...Susan returns next Monday and she better bring it (to coin a phrase), or we will be dumping her and going to an OT or PT of our own choosing and billing our insurance for it (that is what the Regional Center will do anyway. So why should we take their (Excuse me) bullshit person when we can get a service that might actually help us to help Elijah?  Maybe I'll take it all back next week.  I hope I do.

And onto my next grievance.  My birthday is coming up.  I like celebrating, am not incredibly bothered by another passing year, but there is a haunting memory that I can never seem to lose.  It was the year I turned 21, (yes that was 1922 for those of you doing the math...) and I planned to have some friends over for a party out at my parents house. Basically, 3 people showed up- my two best friends at the time and my now Ex, who was deathly ill and spent the whole time in an upstairs bedroom anyway.  Joyous occasion it was. It made me re-evaluate who I considered friends.  I don't recall all of the details, but I know how it made me feel and it took a long time to shake.  Well, I guess it's still a bit of a fear- to think you have rock solid friendships and then they flake on you and the true colors of the friendship aren't so pretty.  For years, I've said that if I do anything for my birthday, it's only because I want to and if anyone shows up, that is just a bonus.  This year, I have yet to make more than a half hearted effort to round people up, but I did send a cursory text today. Somehow in the course of texting (which is a truly ridiculous form of communication, I know) I managed to get snubbed a few times.  Some from no response and some from, "Oooh, sorry, I have to wash my hair that day."  There was no ill intent and I know that a number of the responses are delayed because of trips and work, etc. I think I'm just feeling a little vulnerable about the old birthday ghosts, and a little irritated that it requires SO much effort to get a few people I love together.  I spend my days planning events and I get a little burnt out when it comes to something for me.  Hey- let me make a huge effort to round you up to celebrate ME. yuck.

I needed to write today.  I needed to use this crazy online, universe baring, blogging-journal thing to do what I need it to do: be an outlet.  I needed to get out the frustration, a few tears (and...cue...) and say that today I feel just a little defeated in the process of life.  Today was weirdly emotional and it's not really all that surprising.  I had an overly full work weekend, which meshed right into my regular week- including work and family scheduling.  I am tired. And I ate 3 cupcakes (and a salad), instead of a well balanced meal. It is just like when I watch my children melt down, and I go through the mental list:

Double check.

Perhaps this picture of Christian that I didn't even know was on my camera, taken by Charles at some point I'm unaware of, explains how I'm feeling best:



P said...

Call and calmly express your rightfully and jusifiably so anger to a supervisor/program manager. The name is likely on the website. Be pissed, that is wrong on all counts. The specialist is not COMFORTABLE with infants and didn't prepare by reading one of the what five books on DS fro
the regional center library. That's what at a minimum any person decent at there job would do.

Get the insurance part cleared up cause if you have benefits, you have to use them first. It's not optional anymore. Unless it's back up only and he's on mediCal like is recommended by many people (regardless of income, medical hardship can get it. Like too much burden/strain on family).

My point is you can see a therapist once you find one after figuring out your plan and your doctor will approve it and maybe help. It's all new these therapies for our kids cause the regional system did it. I say once a week OT and PT and speech monthly is good.

Work on regional in the interim but don't wait, call insurance first--it's more effecient and productive! Regional is going to be a long term fix. Ask around for good counselors (church folks down the street?), yours seems off. Not honest or proactive enough.

Chalk up another similarity for us! My 21st story is as wrong. I'm there for ya, what about a second get together to celebrate or rebirth as "new and improved" moms. Benjis bday is Sunday!

Your friends that are not your BFFs may feel unprepared to comfort you and unsure and unwilling to say the wrong thing. Try to pretend you are in their shoes, they want to help but are afraid to make you feel worse so being "busy" at Life with you an understanding empathetic friend is easier now.

And I know that much better now thanks to your own TELL ME MY SON NEEDS speech post, so thank yourself for my insights if it makes any sense to you at all!

P said...

I would personally perhaps go check out one if those DS books or videos at the regional center today and physically and personally go introduce myself to the manager/program leader (whose name is likely on the website or ask when you get there we are in early development I think it's called and it might be split by where you live).

Nothing like being live and real and bring any kids with you. Parents have gone to ours and stayed until they got their answer.

Never let them see you sweat or get worked up. It's like a cheap client haggling over your final bill, you do it every day.

Your math is right, you want experience and/or passion. You got neither but only a scared employee sent to do a job they are not qualified at all to do. Not acceptable and WRONG.

Barbara R-G said...

Don't forget, also, it's only been 4 months. Those hormones are still a-coursin'!

Tara said...

I have so had days like this! Hang in there! I would call and insist on OT or PT. Btw, a "developmental therapist" was either a teacher or a nurse before becoming at DT. Eon has never had one (and probably won't). PT was the most helpful for him in the first year & a half, but OT would be beneficial if there are feeding issues. Speech 1x/mo would be good, too. Sorry she wasted your time.

Amy Traweek said...

in Texas, we had a "coordinator" who did the evalation and came every few months or yearly (sorry it's been almost 10 years since he last had ECI), and then had OT, PT and eventually ST. I had someone working with him at 6 weeks! You stay on them and find someone else in the office who can help you-you start supplementing with cereal at 4 months and DS kids have a harder time! It is called EARLY CHILDHOOD INTERVENTION FOR A REASON! Hang in there momma. But you have learned quickly you HAVE to be an advocate for your child. Nobody else will! Amy, mom of Zachary with DS, age 12.

Jen Currier said...

Thanks everyone! Amy-I knew that it would be a difficult process, but nothing really prepares you for the Momma bear instinct that takes over and make you growl!
Tara- yes this CDS was formerly a "psychologist", she didn't say for what. I'm definitely going to push for OT or PT right away- I'm doing what I can with him and I know some of it is common sense, but I would really like a professional to give me some tips. I spent 5 minutes with an OT I met and in that time I changed a few ways I was handling Elijah and saw huge improvement.

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