Tuesday, August 09, 2011

Being on the fence

I feel pretty defeated today. I shouldn't feel that, but I do. You see, the kids had their EI evaluations (in our new county and state) today and according to the therapists, they all came out "right where they should be." Yet, they're only looking at "functionality" and only saw the kids at their absolute best. First thing in the morning, right after they slept and ate.

I hate being in this position of needing to advocate for them. You know the kind of unenviable position nobody wants to be in when facing a medical professional: the whining mother. The one who insists there's still some progress to be made when people who look on the surface think otherwise.

Today, I felt like I needed to justify and convince. Their 3x Cerebral Palsy diagnoses aren't "enough" to qualify them. What.the.fuck. "Cerebral Palsy is a catch-all diagnosis. It's so broad," said the therapist.

So, "they probably need orthotics" but because they can walk "functionally" they "don't need therapy." Say what? So, in a sense, it's counting against them that we've taught them to walk by age 1ish, and to run and jump before age 2. That, I hate. I want to celebrate their successes, not be in this position of barely good enough.

I'm pissed because I feel like I failed them today. I'm frustrated because I don't want them to have to receive services, and yet, here I am battling the system... and losing.

Parents of kids with hemiparesis and paraparesis have warned me that if their diagnosis is mild, it's a struggle to obtain and maintain services because the kids' problems are subtle and not always "on display" during an eval. I knew this awkward position was coming, yet I feel utterly overwhelmed by it and quite stuck with how to proceed. Essentially, they're doing too well to qualify, and not well enough for my mind to be truly at ease.

Of course, I'm also the woman who cried when their first round of evals came back and showed that they had delays. I'm the woman who bawled when they were diagnosed. So, I should be happy about today's good news, shouldn't I? Isn't this what I've wished for all these months? That they would progress beautifully? Isn't this my dream come true? Then why does this feel so wrong?

I want to be just proud of every single thing they do, and not want to have to point out the stuff that they're struggling with. Stumbling. Not being able to balance all that well. Walking into walls when there's the smallest of distraction. Still not tolerating certain tastes and textures. And yet, that's what I had to do today. I heard myself as I was talking, and I could hear the patronizing answers coming back at me.

Absolutely the worst thing a therapist can say to you when you voice a concern, is that "there's a wide range of normal." Or: "that's what typical toddlers do." Like I don't have eyes in my head. Like I don't have THREE kids who share the same experiences but with wildly different personalities and skills that span the spectrum of what typical is. Like I haven't read all there is to read about their diagnoses, like I haven't sought the insights of other parents with kids who face the same diagnoses, like I haven't consulted with many medical professionals. I despise feeling dismissed.

I'm getting even more peeved as I'm writing this, which means the vent is probably working. Thank you for allowing me to voice all of these conflicting thoughts. I hope to be back to my thankful place tomorrow. The thankful place that allows me to be the mom not-weighed-down by those little nagging thoughts,

"What if they get teased?"

"What if they struggle more if they don't get the help they need now?"

"What if all the targeted play and "work" we've done with them the past 21 months is negated by them not getting all the help they need now?

"What if they regress on skills already learned?"

"What if they learn the 'wrong' way of using their bodies to compensate and then we have a harder struggle ahead than we needed to have?"

They qualified for weekly OT and PT sessions before, but now, in our new state, we'll be lucky to get a monthly PT session and maybe 4 OT consults in 6 months. It's not nothing, so we have a lifeline. And for that I am truly thankful. It's just not what I know in my heart they still need.

I've always imagined them being done with EI by age 3. Again, thankful for that. And we were on our way toward that goal. But now I feel like they might not get the help they need right now... and then we may need to step it up when they're older and in school. That thought terrifies me. To wait until the delay is so visible and bad that you can't address or erase it with ease. To go contrary to what the mommy gut instinct is saying.

This is hard.


Twingle Mommy said...

I know you don't want to come off as a whinny mom and you're not. As moms of special needs kids we are the only ones that are looking out for them. Lets face it, no knows your kid like you do.
My son just went to quartely PT and OT and I had to fight to get that. They wanted to exit him from the program just because he was walk. No way people, he has CP you're not getting rid of him until he's 3. I understand your frustration. My son is walking, but he can't run or jump and he is still so stiff. He still needs therapy since we have such a long way to go. I think these programs are so underfunded that they are willling to let go of kids too early. Hang in there, and keep asking for more treatment. Maybe you'll nag them into getting what you need.

What IF? said...

Twingle Mommy, I tried stopping by to say thank you for your incredibly supportive comment on my blog today, but Blogger wouldn't allow me to post a comment there. I so appreciate hearing from you!

You've pulled together a wonderful list of tips for new parents. I second all of it! Great advice.

Mrs. Gamgee said...

I don't have any advice to give, but I want you to know that your vent has been heard. You are a fantasic Mom, and your children are blessed to have you as their advocate.

Stacie said...

I wish I had words of wisdom, but I am in the thick of trying to get services now also--only my kids don't yet walk (at 3.5 years) so it is obvious there are issues and I am STILL having a tough time! Many hugs to you. I guess all I can say is that you are not alone in this struggle. As crappy as it is, it seems that we, as parents, need to be ready for the fight. Sigh. I just wish we didn't have to be.

Much love to you.

Anonymous said...

"The Squeaky Wheels Get the Grease" - Oh boy, when it comes to EI and IEP services it is TOUGH! TOUGH! TOUGH! As mommy to 1 Special needs child I thought the transitioning out of IE to Pre-K special needs was hell and a half.....then came the revision of the IEP for Kindergarten!!! Well, me dear - if I have EVER had to ADVOCATE, DICTATE, REPEAT, REPEAT, REPEAT - get all documentation together, consult with specialists and hand a massive package to the Child Study Team and phone them every other day - then that is what had to be done. Who knows how the IEP will pan out - will find out in the coming weeks, months, years. OT in the schooling system for sensory issues does not exist - so bear that in mind. Just for one child I heaved and battle axed it out for months to the point of being utterly KAPUT!
Do what you can do - get the girls into indoor gyms where there are apparatus - where they can do all their motor planning stuff and play, swimming...simply as much as they can take and do it as often as you can with them. Most importantly DO NOT GIVE UP. Give the study team a month or two and then contact them again for re-evals. In the next 2 years CP will fall under "Autism" along with the entire spectrum - now how is that for a blast in the brain? Yes, there are varying degrees. Correct - you are mom and you know your girls. On the other hand - if they have learned so well and accomplished so much - to what degree do you need to be terrified about their future? If they don't get IE or and IEP now - you can get re-evals. Just one suggestion (and without a doubt you are excellent with this already) - keep every single report, communication, transcript of phone calls (dates, times, names) - keep your paper/electronic/hard-copy trail of all interactions with these "therapists". Get your Pediatricians records. Have all your ammo ready so when you call in these "experts" again, you can rely more than the silly measurements some (most are excellent) of these evaluators use to make life-altering decisions....or the fact that the girls are having a good day, are well-rested, just eaten etc. Anyone with common sense and some knowledge of these issues knows that no two children/people are alike and no two days/moments/minutes can be alike - we all have good and less decent days. Once the dust has settled, call them back - ask for a different evaluator(s) and ask for a re-eval. Not sure about DC area for the cost of EI - very pricey in NJ - Might be an idea to go privately - through your insurance whichever way you can. I supplemented T's services with private - and it was a good decision. Hold in their Gal. All four of you will be just abfab! It is amazing how early they pick up all kinds of things these days and me thinks you have moved to an area - where perhaps people with children with special needs move to - and there is simply and overload on the system (not that the economy, health sector etc etc helps). Thinking of you. It is very HARD. XX