Meeting

Here is a follow up to my previous post about being prepared for meetings in regard to your child.  I hope it gives a framework that you could easily implement for your own little one, or at least makes you think a little harder before walking into that meeting.  I know I've been a little heavy on the education related posts this week...but it's just what is spilling out of my brain right now :)

{Let me give a shout out to all the D.A.D.S reading this...I have a friend with some super great kids, one of whom has Down Syndrome.  He liked a recent post, and that makes me happy.  I hope these posts are helpful!  Another friend, who also has amazing kids is my friend Amy, you can find her blog here.  She offers the Mommy perspective on having a child with Down Syndrome.}

{See, I told you I can go on a bit, now back to business......}

When you decide that you are ready to meet with the doctors, or therapists who will be steering you in which direction you need to go for help for your child.  It's important that even though you may feel unclear about exactly what is going on, you need to have specific talking points to discuss with the doctors. If you choose to walk in completely unprepared, you may as well throw that co-pay money out the window and save yourself the drive to the hospital, or doctors office.  You are not helping your cause.

I am going to give you an overview of what my over-achieving self walked in with that day, for that first steering meeting for my daughter.  I am not saying you need to walk in with a novel, but do yourself a favor and take something.  You will impress yourself with your level of preparedness, and it offers a sense of control over what may feel like an area where your hands are tied.
Even though I was walking in to discuss everything I felt wasn't "quite right", my first talking point was of how amazing my daughter is.  I discussed her strengths specifically.  Remember in an earlier post I said to be clear about what those strengths are~don't tell them she 'likes to play'.  Um, this is not helpful...this describes almost every kid on earth.  Be specific in your child's strengths.  Just take your time.  Think.  Write them down.

I broke my areas of concern down into several areas, then expanded on each area with specific examples of what I was referring to.  It's amazing how things become clear when you write them down.  Things I thought I could not really articulate seemed to come to the surface in a very tangible way.  Give yourself some credit before you even start.  You can do it with or without an 'education' background.  Promise.

And the "areas" I focused on are....{well, a whole section on strengths first, and then....}

1. Physical Issues
2. Auditory Issues
3. Speech and Language Issues
4. Academic/School Concerns

Now remember, these are the areas I had of concern for my daughter.  Your list may be longer, different, or shorter.  That's OK.  Just make the list, the doctors will be so impressed....

1.   Physical Issues-
1. Was there anything of note when your child was born?  Did anything go wrong?  Was there something odd that the doctors could not explain?  There was for us.  Sometimes things that seem odd at birth can affect a child later in life.  Sometimes those things do not surface until the child is school age.  Sit in a quiet place, and try to remember.  Maybe I will expand on this down the road...
2. Does your child have any aversion to textures?  Smells?  Clothing?
3. Is there behavior out of the ordinary during daily, 'ordinary' situations?  Is there a pattern?
4. Is your child a rough, physical type of play kid?  Or does your child remove themselves from other children?  Remember, parallel play {where children play independently with the same toys/game side-by-side another child} is developmentally appropriate in young children, but not so much as they get out of pre-school.  Then it can become detrimental to their social development.  If you need to, 'Google' "developmentally appropriate play for my _____year old child".  You will easily find checklists that may guide you in the right direction, or point out red flags.
5. Does your child have a sense of danger that you feel is appropriate?  Are they reckless?  Have they ever had a head injury?  These two areas {appropriate fear and brain injury} can be very closely tied together, and the doctors will want to know this.
2. Auditory Issues
1. Can your child follow a 2-step direction?  More steps?  Less steps?
2. Do they respond to you when you are in crowded spaces where noise is a factor {like if you are in BJ's, or Costco...the acoustics in there are rough}?
3. Does the child complain that they cannot hear the teacher, yet their hearing screenings have come back perfect?
3. Speech and Language Issues
1. Can your child explain what they are trying to say, or do they get frustrated and shut down?
2. Does your child understand that words have specific meanings?  Like when you point to a door, it is always called a "door", not the "window", or the "wall".  Mislabeling things is a speech and language concern.
4. Academic Concerns
1. What are the child's teachers saying?  Where are their areas of concern?  They spend many hours with your child each week~listen to what they observe.
2. Is your child socially aware, or awkward in classroom situations?  You may be surprised how different your child acts in school.  Home is a comfortable place....school can be daunting.  Their behavior can say alot about what is going on with them socially/emotionally within the classroom.
3. Does your child participate willingly in classroom discussions?

I could go on forever, but I hope I am making clear the things I had to consider when helping my daughter.  Like I said, your list may look different than mine, but that's the point.  It's for your child, with different needs.  I just want to help jog your memory.  When you are in the thick of wanting to help your child, you are probably overwhelmed.  This will help make it manageable.  Think small pieces.  You can do a little bit each night.  Ask your wife, husband, partner, relatives...what they notice.  They may see some things you were so "used to" that they didn't stand out. 

Make it something like the above structure.  It will give you talking points, and the doctors a framework to start with.  They are learning about your child, and this information will be invaluable.

Just don't walk in with a rambling manifesto like the unibomber, that would be weird {I have taught you better than that}....you got this! Any questions, ask me.

Have a great day!

{Jenn}

Ask

I remember the day I was at AI duPont Hospital for Children for one of my girls {I should have a parking spot reserved for me there for God's sake} who had just been tested for CAPD {Central Auditory Processing Disorder} like it was yesterday.  It is a crystal clear memory. It was the day the Audiologist confirmed what I had known since my girl was about 2 years old.  Yes, she has a definitive diagnosis.  Yes, it is dual-hemispheric.  And no, all of these years when I thought I was losing my mind because "something was off, but I couldn't put my finger on it"...I wasn't crazy.  I was spot-on. I felt relief mixed with heartbreak for my girl.  She was having trouble all that time. It wasn't just toddler tantrums. 
{Here is a study someone did that was helpful to me, it's not long, and it is a bulleted presentation}
Soon after that the diagnosis of a "mixed receptive and expressive language disorder" came as well.  The pieces of the puzzle had finally come together.  Now I knew how to help her.  Game on.

She was 7 when this all came, because you have to be chronologically 7 to be tested for CAPD.  It feels like an eternity when you want to help your child, but aren't sure how without the 'label'.  Sometimes people complain about not wanting their kid labeled.  I get that on some level...but I am writing this to tell you something important.  Without the label, the targeted help will  not come.  You cannot fix the plumbing if you're not sure of the part that is broken.  Take away the stigma you may feel as a parent, or caregiver~it is the ticket to helping your child.  Especially if your child has an "invisible disability".  To others your child may seem lazy, or as a behavior problem...the kid who always acts up or has severe tantrums at the birthday party, or when it's time to go home a little early from the family event.  You know better.  And that's why from now on, think of yourself as your child's biggest advocate in school.

I have met other parents who feel 'something isn't right' as well, but don't know where to turn.  After all, the child "looks fine" and many behavioral things can be shrugged off as being tired, cranky that day, or maybe just 'being a kid'...kids act up sometimes.  So, you as the Mom or Dad start to feel the conflict that I did.  Is it me?  Am I reading too much into this?  Is it the 'special education teacher' in me that is looking for things?  

If your gut feels otherwise, believe it.  Start to write down situations where your child has difficulty.  Is it always later in the day?  Is it only when you have unexpected changes in routine?  When you go into the Behavioral Health dept at AI duPont  {or wherever you are going} like I did, you are going to want to share these things with the doctors.  And I am here to tell you it is emotional, so having a list of specific issues will help tremendously.  You already know my background, so when I walked in, I had a full on report written, and I had copies for the doctors.  I decided this would be just like if I was planning on an IEP meeting for one of my students when I was working.  My girl was my case study.  Take the 'Mommy' out of it, and get down to business.  Step out of the emotion.  How can I get the most help for my child now?  This is critical, because if you keep telling yourself, 'Oh, they will grow out of it', and your child gets to 4th or 5th grade, barely getting by, self esteem shredded.....you will have some more mommy-guilt than you need, and God knows we put enough on ourselves as it is! {I should say it is NEVER too late to get help for your child, this is just an example}

The question I get asked most about CAPD, and getting my daughter diagnosed is this...'How did you know where to go for help?  Who did you call?  What did you say?'.
You might expect something intelligent from a person who spent professional time in the field...and you would be wrong.  Here was my conversation with the woman who answered the phone at AI duPont....it's as close to verbatim as I can remember....{warning, I sound like a moron}.

Nice Lady: Good Morning, Office of Neurology, how can I help you? 

Me: Hi, um, I'm not sure.  Like, I'm not sure what I am asking for.  Um, OK, I know I need you, but I don't know what I need you for...  My daughter needs help, I think I want her screened by neurology, but I don't know what kind of screening you have.  So, I know I need you, but I don't really know how I need you...does that make sense?  I'm rambling, I know, I'm really sorry! 

Nice Lady: {laughing} No problem, I can help you.  Tell me what's going on with her. 

Me: {you can guess I rambled more...something like she mislabels things at home, language can be jumbled, she struggles in school, doesn't appear to understand what is being asked of her sometimes...} 

Nice Lady: Well, would you like a medical neuro, or behavioral neuro screen?  

Me: Oh my God, there are two kinds?! 

Nice Lady: {still laughing in a nice way} Yes, there are two kinds....from what you are telling me, it sounds like you may want Behavioral Health.  I can transfer you there, and you can talk to them.  Tell them you'd like to have a steering meeting to decide which direction you need to go.  Good Luck! 

Me: Thanks for being so sweet, I know I made no sense... 

Nice Lady:  You're fine! {laughing}  Call back if you need me.

That was it.  That's how I got on track to help my daughter in a very targeted, specific way.  The help and assessments she went through were thorough and definitive.  As an educational nerd, I cried when I read the report.  It was specific, gave sound, usable suggestions for school, and was a useful, beautiful picture of what I had been trying to articulate for years.  I wrote the doctor a thank you note for taking the time to be as thoughtful as she was in the report.

Let yourself be OK with asking for help.  It's OK if you sound like a total idiot.  You're not supposed to know that there are two 'flavors' of neurology at the hospital!  That's what they are there for.  Ask the questions.  Don't let your child suffer in school without help, and just assume the teacher will figure it out on their own.  Remember, invisible disabilities can look like other things.  Do you know how many kids the teachers have to teach?  How many meetings they have to attend?  The data they have to keep up with {that last one is a special shout out to my teacher friends...lol} on a daily basis?  It's unreal.  You have no idea.  They want to help each and every kid~but let's be honest~you are just as important in guiding your child's education.  

If everyday your child had to swim in a pool for 8 hours...and you knew they couldn't swim that well...would you send them to the pool each day, and just hope that someone threw them a raft when they couldn't tread water anymore?  I hope not.  I'd rather send them with their own life preserver.   

Go out on the limb for your kid.  Kindly tell the teacher, or the doctor, or the "Nice Lady" on the phone that you have no clue.  They will help you, and guide you, I promise.  
{OK, fine, I know there are crabby people in the world, so if you get a crabby one, call back and ask for the "Nice Lady"} 
Just ask.

Have a great day

{Jenn}

*If you'd like to know how I organized my thoughts for that initial meeting, I can give that info in a follow up post...just ask :)  It was very helpful, and the docs joked that I already wrote their report for them....it's worth being prepared.