Up For Down Buddy Walk

Today was our first attempt at participating in a Buddy Walk.  Ours is a pretty small group but we managed to stop traffic for a quite a while anyway!  It was fun to meet some people I hadn't met before, run into friends we hadn't seen for a while, and see face to face some of my Facebook friends that I'd never met in person or only occasionally seen in person in the past. Our younger son doesn't have Down syndrome but is in a special education class and I just today learned that one of his aides has a son with Down syndrome.  It really is a small world, our special education bunch!

When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug.  It was so absolutely sweet and unexpected!  She sees that she is looking into a mirror of sorts and she enjoys that.  I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them.  I saw today that she feels the same.

Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves.  It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability.  The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure.  That's what is so great about these kinds of events - the lack of pressure to do everything right.  They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes.  It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.

I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now.  We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.

Just one final word, our walk was done in memory of James Bond Jennings.  He was a young man in the group who died last year of pneumonia.  He had lost his mother to cancer just a few years before.  She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts.  This is quite a family.  Grady with others put together a golf tournament to benefit the group in memory of his wife and son.  James' friends each shared something that they loved/miss about James and let go a balloon as they shared.  It was absolutely touching and brings a tear to my eyes even now.  I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.

Underestimation

We had our latest IEP this last Tuesday.  It was another example of how our district will use any means they can think of to avoid doing the right thing.  Our daughter has been out of school for several months now, the last couple due to the fact that the district has not done what was promised in our last IEP and so there is no one who is trained to work as an aide for our daughter.  They were supposed to have sent her aid to training with the ABA company, but never did.  I have confirmed this with the ABA company but the district and the SELPA program specialist "didn't know" if the training had occurred.  When they act as if they don't know rather than becoming indignant you can be pretty sure it didn't happen.  But we didn't confront that part of things because it might make us look like shrews when we go to Due Process, if we have to go that far.  The truth is they probably never intended to send her for the training and didn't expect that I would check into it.  I think this because they are just used to pulling the wool over the eyes of unsuspecting parents.  You would think by now they would know we are no longer in that category but then they are champions at underestimation - they underestimate our kids and they underestimate us.  It helps them to underestimate our kids because then they can offer fewer services and if we think they are right in their underestimation then we agree to less than what our kids need.  Underestimating us however, is foolish, because then they don't plan for the responses we are capable of and do offer.  This can be to our benefit however, since throwing them off their game can cause them to make mistakes.

We need to keep in mind that they will try to underestimate our kids, at least those kids who appear to be lower functioning.  They believe this gives them the rationale (which we know is misguided) they need to offer little to nothing, since they don't want to "waste" their money on educating our lower functioning kids, they would rather use that money to litigate against the lower functioning kids than actually trying to give them any educational benefit.  If only I could go back to the days of believing their underestimation of my daughter, but never again.  Never again will they be able to convince me that offering her nothing is logical.  They have to try to educate our kids before they determine it won't work.  And they have to try with more than one type of modality, many times the reason our kids haven't learned is because no one has figured out how to reach them.  It may take effort to figure out what works with our individual kids, but, believe me it is worth the effort.