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}

Prepare

In my first week of having this blog...I realize I am being a bit ambitious here...I am going to try to keep up with the thoughts flying through my mind, as I think of what to write next.  And here's hoping I don't run out of something to say that makes sense {be warned...I can talk forever, so if that is any indication, I will never shut up here either}.

This is a follow up to some "meeting preparedness" tips I tell my friends about before they go to their IEP meetings.  This is my experience, anyway...

Whether it's a steering meeting, or your child's IEP {Individualized Education Plan}, you want to be prepared.  As a teacher, I held IEP meetings regularly with families, and thought nothing of it.  It was a typical part of my day.  I assessed the child, prepared goals for the school year, presented to the family in the meeting as thoughtfully as I could, and went on with the everyday task of educating the child. That was it.
Then my daughter qualified for services.  I had been home {I stayed home after having our first daughter} and realized that I would be attending the meeting as a parent...not as the teacher.  It was surprising how that made me feel.  It's different being on the other side of the fence.  I was nervous.  I realized that maybe people may not agree with what I felt was best for my girl, and the emotion of it took me off-guard.  I knew all the members of the IEP team, for goodness sake!  I had worked with all of them, and they are kind, sweet people!  Why was I so 'turned around'?

It's just different when you are the one invited to discuss your child.  

I suddenly realized that every parent who walked into my IEP meetings over the years was probably very nervous, especially since they weren't in the field.  I never really thought about that.  Here I was, a person fresh out of the profession, and I was nervous. I knew the law.  I knew the line by line document very well.  Still, when it's your child, it's different.  Emotions cloud your logical mind.
The meeting went just fine, and they always do.  As long as you go into the meeting knowing you are a participant, not just an observer, you can make your child's IEP a living, breathing document that molds their education, and gives them the accommodations they will need to be successful in the classroom.  But you have to be prepared to give thoughtful, meaningful input into the document, or else you will be an observer.  And if you let everyone else do the work, and you aren't happy with the finished product....well....you can't really complain.  Well, OK, you can complain, but in your heart of hearts you will know that you could've done more to speak up, and thoughtfully voice your opinion.  So save yourself the aggravation  and go into your meeting prepared.
Here is the cheat sheet for when you have to attend an IEP...it's what I always have with me:

1. Have all of your child's current documentation.  If your child has recent evaluations from doctors, have it with you.  I keep a binder of all of my daughters assessments done outside of school, as well as as section of school IEP information.  It travels with me.  Put the documents in page protectors.  If school needs copies of it, they can make them on the spot.
2. The teacher will ask you about strengths and weaknesses of your child.  Think about this.  Don't just say they are a 'happy kid'.  This needs to be meaningful.  Tell them your child excels at artistic tasks, loves to paint, ect..  {To a teacher that tells me instantly that your child is probably a visual learner, and will need visual prompts in the classroom for their success~that is very important}  
3. As far as struggles, really think.  Do they have a hard time listening to you when you ask them to do more than one thing?  That's important to know. {In teacher speak, that will sound like "has difficulty following directions containing more than one step".....the goal might sound like this..." insert name will be able to follow a 3-step direction with minimal (give number) teacher prompts by (end of school year date) at  90% accuracy}....see how your input is molding the goals on the IEP?  If you said, "doesn't listen to me", that does not help write a goal.  
4. As far as educational needs, yes, the teacher will have suggestions for the educational goals, but what areas has your child struggled with in past classroom/Pre-k/daycare environments?  If you have concerns in reading, or decoding and there isn't a goal presented, speak up.  Ask if you can add one.  The teacher knows how to word the goal.  It's OK, you are part of this process, remember?
5. Know the types of classrooms setting your child could be involved with.  Are they currently in a 'typical class'?  Is there an inclusion classroom?  Do you think your child would benefit from a pull-out situation, or a separate classroom setting?  If they are not in an inclusion class, is there a para-educator that can help them?  Remember, focus on your child here.  Don't let any of the stigmas of society hang on you here~this is not about you, put your ego away~it's about helping your child.  Let you child get the help they need and feel successful, when you see them thriving, you get the benefit too.
6. Know whether or not your child will be receiving any special services, like OT {occupational therapy}, PT {physical therapy}, or Speech and Language therapy.  The IEP is the document that houses all of this information.  Make sure it is listed, goals for the services make sense, and the way the therapy will be delivered is noted.  Is it pull-out {in different classroom}, push-in {in the regular classroom setting}, or a combination of those two models?  The frequency of services will also be listed here.  Is is daily?  Three days a week?  Make sure it is accurate.  This is a legal document.

Above all, know that you are a part of the IEP team.  Your input is valuable, as you know your child best.  As someone who has been on the teacher side, I can say that meetings are much more productive when parents come to the meeting with an open mind, and calmly discuss their feelings. Going off on a teacher never really goes over well.  And it's counter-productive to getting an effective plan in place for your child.  I realize that not all situations are like mine.  Our school district is wonderful~I'm lucky, I get that.  But I can tell you that no teacher goes into education for the money, they go into it because they want to help children.  The whole "summer off" deal has melted away for teachers~at best, they get July off, and even then they are cutting out name tags for your kids.  Seriously, they do way more work than people know.  In any other job, if you work overtime, you put in to get paid.  In teaching you do it because you love your students.

I can tell you that from personal experience~when your kids were in my classroom, they were "my kids".  I hope this helped prepare you for that upcoming meeting! Any questions, let me know.

{Obviously this is my perspective, if you'd like to see a more "formal" bit on the IEP process and the law, click here, or just Google your question. God knows I have done that many times....}

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.