My email from David

I was going through my emails, deleting old ones.  I'm bad about this.  I save emails.  Ok, I'm an email hoarder.  I admit it.

The day Kamdyn's pediatrician said the words, "The results are positive for Trisomy 21" (cue puzzled, what's he talkin' bout look on my face)  "That means Kamdyn does have Down syndrome" (while passing box of tissues), and after I cried and called my mom, I decided that I was going to find anything and everything out there that was available to Kamdyn.

Unbeknownst to me, the hospital had already submitted our information to our local Early Intervention program, so that was one call that I didn't need to make.  I'm sure it took some in depth deductive reasoning skills to figure out that this name they already had was the same wackadoo that called again and set up yet another interview.  And if I had thought about it, I probably would have figured out that someone from Early Intervention had already called me.  But, at the time, I was all about being thorough.  I was going to call E-V-E-R-Y number I found.  Plus, I was calling so many people and being transferred so many times, that I didn't know who I had spoken with anymore.  The term Early Intervention made about as much sense to me as the Chemistry class I took in High School (squeaked by with a D.  Yeah, me.) 

And when someone called me up and said, "Hi, I'm Mrs. What's Her Bucky from yet another agency.  We need to schedule a time to come to your house for an evaluation of your daughter", I really don't even remember if I knew what I was signing her up for.  I just knew we were getting somewhere now.  It's funny now to think back at how clueless I was.

Every other place that I called said I should sign her up for Early Intervention, and they should have everything covered. Ok, I did that, but there must be more, right?  I mean, that can't be it.  Turns out, that's it.  And after hours of phone calls and being on hold, I had it figured out. 

One of the people I contacted was a sweet man named David from some kind of disability council.  I called them all, so who even knows now, but it's one of them.  David, himself, had some type of disability.  His speech was slow, and he stuttered.  The words seemed difficult for him to get out.  Being new to this whole realm of disabilities, I found it odd that they chose the guy who had a speech difficulty to answer the phones.  Now, I look back, and that one phone call taught me so much.  When David emailed me back with the resources I had requested, he wrote, "Congratulations on the new addition! It was a pleasure speaking with you the other day,"  followed by a list of every disability network, parent support group, and agency I could possibly need, most of which I had already called, of course. 


Now, almost 2 years later, I'm glad I spoke to David.  I'm glad that I learned that someone with a disability can be helpful.  They can be smart.  They can use a computer.  They can have a meaningful conversation.  And they can tell someone "Congratulations" when they have mostly been hearing "Sorry".  I've been looking at that email at the bottom of my inbox for almost 2 years now.  I thought I better save it, just in case, being the email hoarder that I am.  And it was also a little piece of those early days.  A little reminder of the place I was in. 

Do you know what I've found out in these last two years?  I've learned that Kamdyn doesn't need whatever I thought I was searching for in those many phone calls. 


She needs me to clap for her when she succeeds.
She needs me to hug her.
She needs me not to compare her progress to other children.
She needs me to stop worrying.
She needs love.

I opened up that email.  I smiled.  And I deleted it.


Just one more step in the right direction.

Kamdyn's One Year Evaluation: setting goals and working around the rules

I remember months ago, when one of Kamdyn's therapists mentioned that the kids who receive therapy services, do not usually start Speech Therapy until 18 months.  I had no idea at the time what Kamdyn would or would not be doing after her first birthday, but I knew that 18 months seemed late to start focusing on speech.  The rule I usually go by when introducing new skills to Kamdyn is : When did my other kids start doing _____________?  Even if I don't think she will pick it up, I start introducing it.  With Kamdyn, I have found that she needs a lot of repetition to learn something.  We repeat and repeat, and one day, it clicks, and she's got it.  I feel the same way about speech.  I know that we will have to work with it and repeat, repeat, and I don't think we should wait another 6 months to start.  At Kamdyn's 9 month review, I mentioned to her Service Coordinator that I wanted to add speech.  I also had conversations with her therapists about my thoughts and concerns with the speech, and her therapists were also on board.  Then, at Kamdyn's one year check up with the pediatrician, I spoke to her doctor about therapy.  Her doctor also agreed that Kamdyn should start speech and keep up with her other therapies.  Finally, today at her one year evaluation, we were able to bring all of these pieces together.  Rather than signing Kamdyn up for weekly Speech Therapy, however, we are signing her up for monthly services.  If you sign up for weekly and no one has a spot open for weekly, you have to wait until a weekly spot opens up.  If you sign up for a monthly service than you are more likely to have a therapist assigned sooner.  Then, when a weekly spot opens up, you are immediately changed to weekly.

My other agenda for today's meeting was to not only add Speech Therapy, but also to keep her other therapies, Physical, Occupational, and Special Instruction.  Typically, a child only receives three services, so they are reluctant to allow a fourth.  They pretty much make it sound like you are not allowed to have more than three.  I was actually told that I could not at one point, but a couple of weeks ago, one of Kamdyn's therapists informed me that you can get past that stipulation if you push for it and have a valid reason why.  So when the Service Coordinator asked me what my concerns were, I was ready with my well rehearsed response and my doctor's note that stated he wanted Kamdyn to continue her other therapies after adding speech.  I explained that I do not want Kamdyn's delays in Physical and Occupational Therapy to cause her cognitive progress to slow.  If she cannot move around to explore her environment, her curiosity may be stifled, or at least that is what I said ; )  They wanted a reason.  There ya go. 

We also had to rewrite Kamdyn's goals, because there needs to be specific reasons and goals established to justify each service, especially with my dreaded fourth therapy.  We kept her Occupational and Physical Therapy goals the same, but we added a goal for demonstrating cognitive thinking with more purposeful play.  Lastly, we added a goal for increasing vocalizations and sounds, interacting with family members, and using sign language.  And there you have it.  A justification for Physical, Occupational, Special Instruction, and Speech Therapy.

Today, I was the squeaky wheel that gets the oil.