4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Wednesday, September 21, 2011

""Journey to DX" series, part 1 (just as Ms. Andrews sang, "Let's start at the very beginning, a very good place to start")

If I had a dollar for every time I've been asked how I "knew," what I "did," my kids' college tuition would be paid for. 

So, I'm starting a little "series" here on Four Me and You called "Getting to DX." When most parents start that journey to diagnosis, they aren't even sure they wanna get on the bus. We've all read a zillion times that having a child with special or different needs is a journey that requires the passing through of severahttp://www.blogger.com/img/blank.gifl stages, almost like those stages of grief. 

I'm planning future posts in this series about finding the "right" doc, gathering supports, collecting data, managing your child's care, managing your child's family and friends, the "holy grail of DX," and the like (and I'm also planning a future post on how best to help a friend who is experiencing autism), but here I want to start at the very beginning.

And, that beginning goes something like this...in the very pit of your gut, the very core of your being, you "know." Either you're the shittiest parent ever or something is wrong with that kid. Others around you may or may not see it. Chances are, if they see it, they either make vague "parenting" comments or say that all kids are different or just ignore it.  We're going to talk about this more later on in this series, but for now, just focus on that core/gut feeling.

This kid that you have is not ____________ (fill in the blank: "normal," "okay," "what I thought a kid would be like," "like other kids his/her age," "what you wanted as a parent"). Whatever. However you describe it, you know. For me, I wasn't experiencing the same things that parents of other kids my child's age were experiencing, and I also knew that 4A was just...off. Different. Weird. Hard.

That, and I feared that it was my fault. Something I was doing wrong. Some flaw in my parental character or skill. This, too, is something we'll talk about in this series, but go back to that gut/core feeling that something is just NOT right with that kid. 

So, you've accepted in your gut that something isn't right. Some parents will tell you that after accepting this gut instinct, they then want to help their child. Not me, my friend. I wanted someone to shut her up, to make her stop, to fix her....for ME, not for her. Because I was either going to kill her or myself or lose my mind. Those were honest, true feelings that I had, and we'll talk later in this series about how to handle those.

From here, when you've accepted what you know in your gut to be true, there are a couple of good places to start. 

Now, a word of disclaimer or warning....I can not possibly know, writing here in a vacuum as I am, who you are or what's going on with your kid. I don't know where you live or what resources are available to you. Use your common sense and trust your gut. TALK TO OTHER PARENTS. Not the regular ones, but the ones with other weird kids. Parents of spectrum kids KNOW EVERYTHING! You will learn more from them than any professional you'll encounter...about how the system works, about what resources are available, about who the good docs are in your area, all of it. Don't rely on me to figure this out for you.

That being said, there are two sort of easy places to start when you've accepted that gut/core feeling that something is amiss: your pediatrician or your local early intervention office.

Now, we're going to come back to these two resources again because they are NOT the place to go for diagnosis. But, as a first stop on your journey, they're easy and free.

A good pediatrician will listen to you without judgment. A really good one will have been waiting for this talk, knowing that something is wrong. That's the kind, by the grace of God, that we got. If your pediatrician doesn't listen without judging OR if s/he brushes you off, march out of that office and find another one. This is NOT going to work if your child's primary doc doesn't have your back. 

Yes, boys talk later than girls. Yes, all kids develop differently. Labeling is never a good idea. Agreed on all counts. But, you are this weird kid's parent. You KNOW in your gut. You are right. Period. It's really not negotiable. Don't debate it or accept a different explanation. You are about to embark on a REALLY long and hard journey (Oh, and it's a trip alright...wink, wink) where you will be your child's primary advocate and case manager. YOU will do ALL of the work. There is no doctor or educator or professional out there who is going to do this or figure this out for you or your child. YOU are going to be SOLELY responsible for that. Get right with that notion quick, my friend, and cast off anyone who isn't on board. Plus, you're going to rely on this pediatrician A LOT as your sounding board, your confidant, you safety check for information, and a whole lot more. So, she's gotta be on board and on her game.

A good pediatrician will direct you to your local early intervention office without hesitation. Any doc who has worked with a kid on the spectrum can tell you that parents are always right, that they always know. So, you should leave that visit with the number of your local early intervention office. Anything less than that isn't really acceptable. Parenting books, waiting a little while longer--those things aren't going to help. And, for the record, we started our journey to DX with 4A when she was 14 months old and probably could've started it a bit earlier than that. It's NEVER too early, but it's frequently too late.

So, this gets us to our second "first option" on the Journey to DX: your local early intervention services office. Where I live, our state government has created offices in each county; it might be different where you live. Google "early intervention education" and your town, state, or area. Or, call your state or county government offices and ask for the number. 

When you call, be forewarned....you're going to be on the phone for HOURS! They will ask you questions of intense minutiae starting from the moment of conception. Answer as honestly as you can, and if you haven't started data collection yet (that's another future post in this series), you're gonna wanna start NOW, both written and video.

Most likely, the early intervention office will set up a screening, sometimes in your home, sometimes at a school or office. Sometimes, the person you first speak to will want to present your child's "case" to the office team to see if a screen is warranted. Go for it. Be prepared to wait. But, it'll be worth the wait.

You're going to do a LOT of waiting on this journey. A LOT!! You're going to wait to get in with a doc, you're going to wait for results, you're going to wait and wait and wait. I remember feeling so irritated. We had finally started towards THE answer (which for me, at the time, was the DX), and I had to hurry up and wait. Wait for an appointment for the screening. And then, after that, wait some more for results. Every ounce of waiting turned out to be REALLY worth it because we now have a very credible, respected, accurate DX for 4A.

So, to recap, here's where you are. (1) You've accepted or trusted that gut feeling that something is wrong with your child. (2) You've talked with your pediatrician and/or early intervention services office. (3) You're waiting.

While you're waiting, I'll keep writing. Stay tuned...

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