Skip to main content


I attended Ben's school's PTA meeting this week. I am on the board as the Special Needs Liaison. I came up with that title last year, and I am still not sure what exactly my role is.

Last year, I spent most of my time learning how the group worked and seeing what the school needed. I know from experience that newcomers with ideas can easily be shot down if they do not know the customs of the group. I planned a fund raiser for the school, made posters advertising Box Top collection, wrote Ben's teacher's monthly newsletter and helped the physical education teacher with Water Day. I feel like I did my time.

So this year, I felt more comfortable asserting myself by planning an event for the students with special needs. Monkey Joe's is a place where kids go to play video games and run, jump and bounce through obstacle courses. Or if you are Ben - you go there to eat pizza and drink a slushy. Every third Wednesday night, for one hour, is free for children with special needs. I asked the PTA if we could advertise to our students about this event. I was given the go ahead.

At the meeting this week, however, I was told that this type of event may not be held again because the school system believes in inclusion. Holding an event just for one population may be seen as exclusive. Privacy issues were also thrown into the argument.

Hmmmm...I sat for the rest of the meeting frustrated and angry. Probably steam would have come from my ears if I had been a cartoon character.

But I waited until the end of the meeting. Oh, how I have grown and matured.

I spoke with the one individual in the meeting who made these statements and happens to have most of the power in the room. I explained that this event was not meant to be exclusive by any means. Any student could attend. It would be geared to and advertised specifically to the children with special needs. I asked if we could just see how it went and then make a determination if this is something we would like to continue. If it met a need, perhaps taking a look at this type of programming, would be beneficial to the school. On the off chance that some parent of a typical child felt excluded and made a stink about it was not a good enough reason to stop this type of programming.

I also explained how many of the students and their families did not come to the events offered at the school for lots of reasons - uncomfortable with the unknown, unsure of their child's role, and any other emotions associated with taking your child out who has special needs. I know tonight when PTA discussed Math & Science Night and Odyssey of the Mind where Ben would surely be welcomed, but would have a hard time participating, I wondered how these were considered inclusive.

Two years ago, Ben performed in a chorale concert. We were told to come, dress him in beach attire, bring props and that was it. We did not know what to expect. Ben was one of three children, of a class of nine who performed. Where were the other families and their students? If I was scared for Ben being up there, I am sure other families felt the same way. Would it feel like our child was on display? After this experience, I suggested to the music teacher to write a separate letter to the families with special needs children, letting them know what to expect. I also thought that perhaps a smaller venue could be used, plan the event earlier in the day or the special education classes could be paired with a regular education class.

Our children are different and sometimes that means that different programs, services and policies are needed. By lumping them in with everyone and calling it inclusion, valuable experiences are lost.

Having this event at Monkey Joe's was a way to offer a safe place for families to gather with their special child, hoping that some connections could be made. I am still looking for friends for Ben and meeting the parents and families helps to build those relationships.

I think I was understood after my discussion with her. I also think this person comes from a caring place. She has a big job and has to think of lawsuits and politics. In the end, she protects and respects all of her students.

Let's just hope someone shows up to this event.


Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

ABC's of ABA

A few weeks ago I attended a workshop presented by a behavior therapist. As it turned out, I went to a conference on the same topic over a year ago. I will describe what I have taken away from these methods in my own words - but please take a look at the links I have provided below. After I learned about this, life with children made a lot more sense to me. Not that this is earth shattering material, but it helped me to better understand the hows, whats and whys of behavior in children, and occasionally husbands. I am in no way an expert in this - just a parent who wants to share a behavior strategy that has worked in our home. I hope to inspire others to explore it further.  Any errors in information comes from me and cannot be blamed on the presenters. Also, you may have seen ABA - Applied Behavior Analysis - connected most often with Autism - please do not let this deter you if your child is not autistic. I use these methods with all my children, none of which are labeled au