Tuesday, September 7, 2010

The Day to Day #1 - Service Woes

One of the things that I was asked by a friend who is entering the lovely early intervention hoopla, was to discuss "the obtaining of services and whatnot".

Um. I love you, L.P. So here goes. I'd rather stick a white hot poker in my eye than deal with the obtaining and maintaining of services. I would rather be caned regularly. I'd rather have any number of very painful and horrible things done to me. Because nothing hurts like the admission that your child needs these services.

To start with, we witness our child show greater and greater proof that they are not quite doing what they ought to be able to. Then we have to go to a professional, typically our pediatrician, to admit this. They grill us like they are our parents and we are 5 and have broken our mom's favorite lamp. They then smile and say something pat and trite and write up an referral to an early intervention intake center.

We call this local intake center and they then tell us that we never even had to get a pediatrician's referral, and we roll our eyes and wish that we hadn't gone through that brutalization.

We make an appointment and go in. Our child then does one of two things. Either they do more than usual or they decide to do ABSOLUTELY NOTHING. hurrah. Now, if they do great, we are pleased, and yet at the same time annoyed because now ANOTHER professional thinks we are crazy. If they do poorly, it totally stinks because our fears have been made good on.

But I digress, when we get to the intake, we get to fill out the government's packet equivalent of the Spanish Inquisition. Which is SO DEPRESSING. We realize as we fill out this packet, just how behind our baby is.

Then you get to wait for a "million years" while all the information is processed.

When you are approved then your entire life is planned between therapies. And cleaning for when the therapists come to your house...because you don''t want another area of life under scrutiny. Because you want to look like you have it together SOMEWHERE!!!

The therapies are awesome, because they really do make a difference. Even if it takes a while to see the impact, your child will eventually improve. And so you continue to jump through every hoop the government asks you to. With joy....mostly.

You spend the year seeing the improvements that your child is making. You get giddy as your child colors all over your wall, because you are thrilled that they have that much control over their fingers so as to manipulate the *sharpie* they found when you were addressing Christmas cards...(Yes, true story! Insert "rah! rah!" plug for Mr. Clean's Magic Eraser) You celebrate every milestone that your baby hits. You find yourself resentful that there is no sparkly sticker to insert into your baby book for the "doesn't throw sandwich crusts off the table" day. But you really do rejoice over stuff like that!

End first year. For the Annual Review to requalify your child for the intervention therapies, you have to fill out the Spanish Inquisition Packet again. And all your therapists (who, by the way, are now your New Best Friends because they are always at your house) assess your Pookie. And you have seriously deluded yourself into thinking that your kid is just not THAT far behind anymore...after all you've seen ALL THIS IMPROVEMENT!!! And your New Best Friend (therapist) sits down with you, while your child takes advantage of this moment to eat bugs out from under your dishwasher. They go over all your child's improvements, which you agree with...and they tell you that while they have made 4 months of improvement in the last year, that still makes them even further behind developmentally than they were before. And you hate your New Best Friend for bringing this information to you. You, know, totally shoot the messenger type of stuff.

The long and short of this is that you start getting nauseated about a month before the Annual Review hits, because you know that for all the positive that you give throw-down-parties over, compared to other kids, your baby is not doing that great. And it is sad.

But, I encourage you to continue to give ALL the Throw-Down-Parties you can. Try and find the sparkly stickers and WRITE ALL OF THE BIG STUFF IN YOUR BABY BOOK!! Because it is really fun to be excited...and it's cool to look back over. And it encourages you and your child, which is the most important anyway!!!

Personal Tips for Dealing with Services:
1. YOU HAVE TO ASK EVERY QUESTION THAT YOU CAN THINK OF BECAUSE NOBODY VOLUNTEERS ENOUGH INFORMATION. EVER!! Talk to other parents, because 50-70% of the stuff that is available to you is never volunteered by your doctor.

2. Always give way more information than you were asked to. Always. I am pretty sure that Elise has been reapproved for the Katie Beckett Deeming Waiver each year (It is a secondary insurance through Medicaid. If you want to know more, email me.) because I send in so much crap that they seriously approve us because they don't want to read anymore.

3. Do what you have to do at the Annual Review, but then insert it all into the trash bin in the back of your mind, because if you dwell in the current status of your child all year, you will never get to celebrate.

4. Celebrations are important. ALL of them!!! There will always be something worthy of a party! :)


  1. There seems to be something somewhat cruel about that process. I'm pretty sure a person would be drawn up and beaten for repeatedly asking a deaf person, "Can you hear me now?", but to uneducated me, that sounds like exactly what they are doing. I can see compairing her to the "average" child with like issues for evaluation purposes, but to be compaired to just that random "average" kid from which all standards are made doesn't make sense to me. Anytime you want to throw a milestone party for something random, I'm in :)

  2. Wow, this is my life right now. We are currently going through the Spanish Inquisition packet and I just want to scream and cry every time I sit down to fill out a new form. Thanks for sharing this, it helps to know I'm not alone!! I honestly don't know what I would do without all of my new downsy friends. ;)

  3. I'm exhausted and emotionally drained just reading about it!

  4. Having been on the "Inquisition" side as a school psychologist, I have to say that I have real compassion for parents in these struggles. I've watched & shared in the pain up-close 'n personal for these past eight years since our Fair Elise was born. . . It IS a painful and scary place to LIVE - knowing, as a parent, you can never escape - even for a moment. ANY moment of attempted "escape" contains that gnawing fear that all is not well - too often confirmed. I've also learned that when parents appear to over-react, usually, it's not a single event that is at issue, but years of fear and sadness and struggles, held in constant check that are bubbling to the surface. My heart often aches for parents - teachers will pass a child on to the next grade or school. Parents will live in hard reality, every day, for the rest of their lives - with the spectre ever haunting of how to plan beyond that . . .

    I guess, the take-away from such a post is that parents of typical children might show a bit more understanding and extend care, compassion, even tangible moments for "breaks" - knowing your child will grow to independence VERY quickly - Children like Elise may never.

    I'm always amazed as I watch large families travel through events quite casually. Just walking to the or from a car can be a major ordeal fraught with significant dangers with Elise . . . putting younger siblings in potential of danger, as well. I watch Tiffany LIVE in a place where heightened sensibilities are on CONSTANT alert - an exhausting way to live! SO! Parents of typicals, do keep in mind that your moments of exhaustion are short-lived. . . Parents of atypicals may live there for a lifetime! Give 'em a break, already! What parents need is a hug and word of encouragement - NOT admonishment that the kid needs "discipline"!

    And teachers, never underestimate how important your collaboration is with parents in devising home/school interventions! I know Tiffany will talk about that since she is in the process of being SO BLESSED by teachers who are using real wisdom in doing just that! It really is going to take a village for these children - and we SO bless parents of children with disabilities when we realize how important our role is in that! Truth is, WE are equally blessed - The testimony of most confirms that - Knowing and loving Elise (and her mama!) will change your heart forever!

  5. Found your blog link on Sarah's blog. I look forward to reading your blog. I have a special needs child as well. =) Nice too meet you.

  6. Nice to meet you, too, Missy!

    I have a page on Facebook (there's a link on "we're wired"). Under the discussions tab, there is a spot for any input you'd like to share! Any rants, offers for guest bloggers, questions that go to either "side"... I'd LOVE any ideas you have! :)