When “I, the Parent” Walk Into an IEP Meeting

My heart races and I start to breath heavy as I walk from my car to the meeting room. Through the years I have been to a lot of IEP meetings for my daughter but each and every time, each and every meeting, I’m still anxious. I wonder if anyone else in the room is sitting there with their heart beating out of their chest. I wonder if anyone else in the room was unable to sleep the night before.

As soon as I walk into the room I can gauge the tone of the meeting. If the room is packed with people already seated and waiting for me I instantly put up my guard and expect the worst. If there are “surprise” guests that weren’t listed on the invitation letter I instantly become suspicious. If I’m handed a pile of reports and test scores as I sit down I instantly become overwhelmed.

If however I walk into the room and I’m not the last one there and I’m asked where I’d like to sit my defensive instincts are lessened. If I see there are “surprise” guests and told why they are there my defensive instincts are lessened. If I’m asked if I’ve received and read the reports my defensive instincts are lessened.

The thing that bothers me the most about these IEP meetings is that I have always been under the assumption that “I, the parent” am an equal member of the team. Everything I read online and in books insists that I am. In reality though that’s not the truth most of the time. “I, the parent” am the one walking into the room filled with school staff. There are a lot of you, there is only one of me. Sometimes you have had team meetings that I wasn’t invited to. My feeling of being an equal member of the team is diminished before I even sit down.

All of this was true until recently. Something changed. I suddenly became an equal member of the team. It was no longer “I, the parent” it was “”us the team”. It took a while to figure out but I finally understood. When “I, the parent” sign that IEP I expect the school staff to be held accountable for each and everything on it. “I, the parent” however, acknowledge that school staff is holding me accountable to help make it happen. This is a two way street. The best advice I can give a parent is that they too need to be held accountable. This isn’t going to work unless it’s a whole team effort. Let me say that again, whole team effort, school staff and “I, the parent” working together.

And yes I know all of that is great when everyone is in agreement with goals, objectives and services. “I, the parent” am always going to want more for my child. The truth however is that is not possible. It’s all about the money thing and don’t you dare disagree with me. So being the realist that I am I am going to need to be creative and ask you to help me find ways to make my child succeed without speech services and OT services every day of the week. School staff it’s time to start thinking out of the box and help me sleep easier at night. Parents it’s time to wake up and become realistic. It’s only when school staff and “I, the parent” are truly committed that the IEP team becomes a united team. And yes that takes a lot of effort from everyone involved.

I expect a lot from the people working with my daughter. I understand however that just as I’m not able to give 100% everyday neither are they. I recognize also that my child is not their only child. They have lots and lots of children on their caseload. I do however expect that when they are at my child’s IEP meeting they are there for my child and her individual needs. “I, the parent” am there only for my child. I have been up all night and my heart is beating in my chest. Together as a team great things can happen.

Don’t Be Fooled by Inclusion

All children regardless of their disability or the severity of their disability can and should be educated in regular classrooms with their non disabled peers. This is the definition of inclusion. As late as the 1990s children with disabilities were excluded from being in classrooms with their non disabled peers. It wasn’t until laws such as IDEA (Individuals with Disabilities Education Act) were passed that children with disabilities were given rights to be educated in general education classrooms.

Today there are a number of inclusion advocates fighting to have every child with a disability included in general education classrooms. Let me be the one to say that while the concept may sound wonderful, it isn’t. Inclusion works for some kids, not all of them. I would hate to see the day when full inclusion was the only choice I had for my child.

Don’t let inclusion fool you. The concept is a good thought and for some kids it will be a great benefit to. Inclusion however, is only as good as it is supported. A disabled child sitting in the back corner of a classroom watching an iPad is not being educated in that classroom. A child having numerous aggressions and constantly being removed from the area is not being educated in that classroom. A child being filled with low self esteem because he or she can’t understand the lessons being taught is not being educated in that classroom. If you are truly going to include these kids the proper accommodations, the right amount of trained staff and any other necessary supports must be in place. And if you are a parent it is crucial that you make sure your child is being fully supported. Too many times we make ourselves believe children are being included but they really aren’t.

My daughter started school in general education classrooms. It didn’t work. She was then put in separate classrooms and included with her typical peers in classes such as art, music and gym. Sometimes these classes were a success. Other times they weren’t. One time a teacher made her come back during her lunchtime for extra help because she didn’t understand what was being taught in class. Another time a teacher didn’t even know she was on an IEP. And then there was all that bullying going on by some typical peers in those classes. Inclusion wasn’t proving to be a great thing for my daughter.

By the time she reached high school she was in completely sub separate classrooms and doing very well. She could care less if she was included in the general ed classrooms. There were two times in high school however that she was able to be included with her typical peers; the prom and graduation. It took a lot of planning and preparation from school staff but both times she was able to be fully included and happy to be there (well maybe graduation we had to work hard to make her smile come through). The point is that both of these times she was successfully included but we had all of the necessary supports in place.

There is a time and a place for inclusion. It is not for every child with a disability everywhere all the time. Should every child have the right to be included? Yes. Should every child automatically be placed in full inclusion? No. Every child is an individual and should be treated as such. Don’t be fooled into thinking differently.

I Am So Scared

Last night I spent my night at a presentation called “Planning a Life: Transition Considerations Concerning Your Chikd’s Future. Not exactly my choice of how to spend my evening but I needed to be there. My daughter will be “aging out” of special education services in school and transitioning into adult services. Soon she will turn 22 and my husband and I are now faced with deciding her future.

How exactly do you plan your child’s life? When she turned 18 we set up trust funds, wills and guardianship. That was less scary because we had an attorney helping us through it. Now we are on our own to make decisions about when she transitions out of school. Honestly the whole thing scares the bejeezus out of me. Those two words, “aging out” have become a nightmare. When she started school I was scared, but not like this. That little girl that I never could have ever imagined becoming a young adult suddenly is one. Her adult life and her happiness have now been left to us to decide.

I have the list. It’s called Adult Day Services. I need to start calling places. We’ll have to arrange a tour. We’ll have to ask questions. We’ll have to make decisions. We’ll have to get past the self doubts.

I’ll wait until Monday to call. I’ll pick up the phone and start the process to decide my child’s future. I’ll arrange that tour. I’ll bring my list of questions. I’ll have the doubt. I’ll be scared.

Thank a Therapist

I love therapists! Good therapists that is. My daughter has received services from many therapists for a long time. There have been speech therapists, occupational therapists and physical therapists both inside and outside of school. And it’s because of the hard work and dedication of these therapists that we have come as far as we have.

I use the word “we” when I say how far we’ve come because the good therapists not only serviced my child but they serviced our family. They made home life easier for all of us. The back and forth communication from our therapists made a difference. The suggestions and tips on what to do at home made our family function better. It takes a united effort but therapists can help your child thrive.

Some of our therapists have become our extended family. When my daughter accomplished a new task at home it’s them that we can’t wait to tell. And so many times in the past a therapist has called or emailed from school to share good news. They get it.

Therapists are such an important piece to this special needs puzzle. They work hard to make what seems impossible happen.

Next time you talk to your child’s therapist thank them.

What If

I often think what if. What if my child was a typical 20 year old girl. What if she was living away from home in a dorm at college. What if she stood in front of her closet full of clothes each morning picking out the perfect outfit. What if she was heading out the door on a date with someone special. What if she had a group of girlfriends that she did everything with.

Do you ever think what if? What if your child had disabilities. What if you could tuck them in bed every night and tell them you love them regardless of their age. What if they never stopped believing in Santa Claus and you could experience Christmas magic every year. What if your teenager was never embarrassed to show you affection even out in public. What if your child taught you how to appreciate the simplest of things. What if your child with disabilities relied on you to become their fiercest advocate and you became a much stronger person because of it.

I often think what if and when I do I know how blessed I am.

These are a few of my favorite things

Princesses and predictability are my daughter’s two favorite things. Just as we are certain the sun will rise each and every day we are certain that Disney princesses will be our main topic of conversation. We live and breathe princesses. If there ever was a princess trivia night I would be the one to beat. I can tell you who is related to who, what they eat for breakfast, and which one is “two-handed” (ambidextrous).

This Disney princess fascination is not a bad thing. There are girls out there everywhere in their cute princess dresses and crowns. You can’t help but smile as you pass them by. After all what little girl doesn’t want to be a princess? But “little” is the key word here. These girls are 3, 4 and 5 year olds. My princess fascinated daughter is not little, she is 20 and stands out like a sore thumb. I would be lying if I didn’t say I felt somewhat embarrassed the first time we stood in line at a princess meet and greet but over time you get used to the unwanted stares.

Why is it that people have a hard time letting our special needs children enjoy the things they like out in public? What’s so wrong with letting people enjoy what they enjoy regardless of their age and its appropriateness? There is a set of standards in today’s society that seems to think this is taboo if you are atypical. To this day there are still some people out there that believe we must try to persuade these children to like only age appropriate things.

We as neurotypical adults though know how good it feels when we are able to act like a kid again and enjoy “childish” things. Have you ever dressed up on Halloween? Have you ever watched adults walking into a comic con show? That feeling you get when you don your Mickey ears at Disneyworld. And remember in TheSanta Clause 2 movie when the teachers received gifts from their childhood. I bet it made you smile. These are not age appropriate things but we do them because they make us feel good. Society however expects us to do them under circumstances when and where they are deemed acceptable.

And that’s the difference. We know when and where certain things are appropriate. Some children and adults with special needs can not pick up on this golden rule of society. And aren’t they the lucky ones then? So the next time you are out in public and see someone not acting “age appropriate” don’t stare or offer words of advice to the parent. Smile and enjoy the happiness that they must be feeling.

As the sun rises tomorrow and a new year is upon us let it be the year that we have a better understanding not only of those with special needs but of each other.