We are the Lucky Ones

We are the lucky ones. 

That phrase is hard for me to say. There are a lot of things in our family life as a special needs family that are not easy. There are times I don't feel lucky. There are times I want to scream. There are times I want to cry. There are also times I laugh and laugh because we are having so much fun.

I say we are the lucky ones because it's back to school time. That time most special needs parents dread. Most are prepared for a fight. A fight with teachers.  A fight with school administration. A fight for the future of their children.

I am a member of special needs parent group on Facebook. I have already seen post after post of parents who have to fight to get their kids an education. Some schools don't want to have to figure out services. They want to bus kids elsewhere. They don't want to hire staff for those kids who require a one on one paraprofessional.

We are among the lucky ones, because so far, we haven't had to have these fights. It breaks my heart to hear the stories some parents have about the way their families and more importantly their children are treated.

We are lucky because our experiences in school so far have been nothing short of amazing. Maddy is on the autism spectrum. She is non-verbal. I've never been so scared in my life as I was last year when Maddy started kindergarten. Maddy has amazing paras who truly love and care about her. They communicate with us through a notebook we send back and forth.  And luckily, those same two paras are her paras this year. Maddy is now in first grade. These two women are like family.

I was nervous this year, as there have been so many changes to staff this year. Maddy has a new case worker, a new principal, a new occupational therapist, and of course a new teacher. That's a lot of change for a kid who does well with routine. So far, things have been great.

We talked to the new principal earlier this year about sending Maddy's i-pad to school. We recently purchased one and put a very expensive communication app on it. This app is a PODD system that is exactly like the one the school started her on last year. It has the same type of pictures. I know some schools refuse outside devices. Ours had no problem. I offered to sign a liability waiver (lawyer momma came out) if necessary.  He made it seem easy. I was so grateful.

We talked to Maddy's new case worker at the open house and I felt good about the meeting. We had some concern because we'd heard Maddy was going to have a new para. She was quick to inform us that it was someone Maddy had worked with in the past and that she would not put someone who wasn't familiar with Maddy with her. That took a huge load off my mind. It turns out it worked out that Maddy got the exact same paras she had last year.

We are lucky because our school is inclusive. I know there will be bullying some day. It's inevitable with kids as a phase of life to tease and make fun of others. But right now, so many kids know Maddy and always say hi to her when we are out in public. Staff, kids and parents I don't know routinely say hi to Maddy and smile at her. At Maddy's kindergarten "graduation" program last year, staff (including the music teacher) went out of their way to include her in the program. Each kid had a line to say. Maddy's line was recorded on a taking device by her teacher and Maddy got to push the button to replay it. Things like that don't happen everywhere. 

I am so thankful that we live in such an inclusive community.   I am so thankful for school staff who love and care for our daughter everyday. THANK YOU from the bottom of our hears for loving our daughter. You are what education staff everywhere should embody. In this way we truly are the lucky ones.

Communication Breakthrough (PODD system)

Recently, Maddy’s school got a PODD system. It stands for: P- Pragmatic= the way we use language socially O- Organization= the arrangement of words and symbols in a systematic way DD- Dynamic Display= the changing of pages. *Source (http://www.myeasybee.com/blog/podd-intro/) For those that don’t know, Maddy is non-verbal. She doesn’t use words to communicate the way you or I do. We (both at home and school) have tried other methods of communication, such as sign language, a PECS (picture exchange communication system), etc. While the PECS is similar to a PODD system, the difference is that with the PODD system, all the pictures are arranged in a book by category according to how we would speak in sentences.

Maddy started using the PODD system at school right before Christmas. Shortly after the holiday break, we had an IEP meeting and discussed the new system among other things. Her teachers were all very excited to talk about how fast she was adapting to the book and how she’d already begun to use is on occasion on ask for something.

After the IEP meeting, school began sending the book home. The hope is with this system that she can take this book everywhere and use it to communicate to anyone, not just close family and teachers. We haven’t pushed its use too hard at home, but every night, I take the book out of Maddy’s backpack and make sure it is available to her. Many times, she will actually take the book to the couch and flip through the pages looking at pictures. I guess at this point, I feel like it’s good for her to look at it in a non-stressful or pressured way.

That approach seems to be paying off.  One of the pictures has the caption “Go Away”. Maddy has pointed at this picture when she is mad or frustrated with me (for example, after I give her some medicine). She also thinks it’s quite funny to point at this picture and give me a devilish grin. I always say, “Go Away?” in a very offended tone and she laughs at me. I often reply with “You go away!”, which makes her laugh harder. Her teachers have commented more than once on Maddy’s sense of humor and marvel at how she is able to get her jokes across even without words. The devil grin says it all.

Another recent breakthrough was when she asked me to read her a story. Maddy never wants me to read her a story, preferring to hold the book herself and be in control of the page turning. But, on that night, she pointed to the read me a story picture. I asked her almost in disbelief if she really wanted me to read her a story. She nodded her head yes with a bright smile on her face. It was all I could do not to dissolve into a puddle of happy tears. I started to read her a story. She let me get about 3 pages in before she took the book from me. But, it was progress none the less.

I’m so happy that the school was able to purchase this system and make this type of communication possible for Maddy. We’ve never had such quantifiable results with any other method in the past. She seems to be picking up this method so quickly in comparison. We are so incredibly blessed when it comes to the staff working with Maddy. Her teachers, her paras, the special education coordinator, all have worked incredibly for Maddy’s best interests. I was so nervous for her starting kindergarten this year. I’ve heard and read the horror stories of what some parents have to go through in order to get their children services. We are so thankful that Maddy has had nothing but the best in care and education at school this year. The progress she has made has been amazing and we can’t wait to see what the rest of the year brings! 

*update: Maddy has continued to use her PODD book both at school and at home. She recently showed me the picture for bedroom when she wanted to go to bed. She did so completely unprompted. 

Good News!

We received good news the other day. The test results for the secondary genetic test to determine if Maddy had Pitt-Hopkins Syndrome came back. Maddy does not have this disorder. That was a bit of a relief, since this particular diagnosis can come with further health complications.

We were actually all on our way to the Mayo Clinic for another appointment when the call came. Maddy also had an appointment with an allergist. Long story short, the things we are worried about her being allergic to (dairy and gluten) are hard to test for. They basically told us that for a gluten concern we need to see a GI doctor. For the lactose intolerance issue, Maddy would need to blow into a breath device to test for it. That's not likely to happen. Therefore, we are continuing to do what we have been doing regarding Maddy's diet.

Life being what it is, I've been really behind in posting anything here, but am hoping to get back to regular posting soon.