Moving out

One way or another Vincent is moving this snow out!

Reach for the stars on CP awareness day!!

Some recent photos from a field trip to St. Mary's hospital. That is Claudia on the right as the surgeon! I love reminders that she can do anything!

Today is Cerebral Palsy Awareness Day...

If you are interested in learning more follow this link

Rainbows and Shamrocks

Make a 7th Birthday Party rather lucky.

Our serious looks, leprechaun-style.

Soap Box...

It may seem a bit crazy to some but we are looking at our summer weeks and planning already. We are choosing time to visit family, time for nature camp, time to take swimming lessons, etc. And yes, we are very blessed to be able to even think about these activities for our children. I do realize this. Though it does not come without some heartache.

See as a mom of a child with some special needs we are constantly making "special" arrangements. Matt and I have this discussion weekly, who is driving Claudia to therapy, which mobility devices we will be taking, who is taking the rest of the kids, which vehicle, etc. There is much to think about when planning with kids and more to think about when planning with kids that have power wheelchairs or special mobility needs.

Back to summer, I love finding activities where Claudia can fully participate and be included. Nature camp seems to fit the bill, everyone loves nature and being outside. So I called the nature center to discuss arrangements. Today the local nature center called me back and said "they don't have anyone trained in that to help her at camp". This was after I offered to be present for any bathroom needs in the 2.5 hours.

On to a local Christian camp, where we heard that we needed to find someone to help her because they would not have extra hands to provide a lot of extra help.

I would love to be the one helping her, believe me, but I have two little problems. In the end, it may be easier to find a qualified babysitter for Vincent and Julianne so I can be free to be the qualified helper that Claudia needs.

You may ask: "Are there not services to help parents in this situation?" and yes there are some.. They work great if you fall into the category of getting medical assistance for less than you are paying into the program. Just to compare, we would be paying $20 per hour for Claudia to receive a helper from this organization making the week at the nature center a whopping $320 compared to the standard fee for Eloise to attend $70. Claudia is worth every penny but we are ready to forgo the disability tax.

Don't believe me.. price out a bike for Eloise about $80 and for Claudia with the "special disability features" between $500-$3000. I'm not kidding, and this stuff is not covered by any insurance or special state funding.

Returning to the topic of summer plans we are thrilled when we can find someone willing to help Claudia at dance or swimming. It's a lifesaver when we can have piano lessons in our house, and they don't charge extra because of our extra needs.

But I do have to admit that Matt and I were thrilled to read in the PACER newsletter that extracurricular activities are allowed to be included in a child's IEP (individual education plan). I dislike that this battle has to happen in the already strapped-for-cash public schools, but on the other hand it is so important for all students to be included in extracurricular activities that I'm elated. She deserves to be included and for her needs to be met with dignity and respect.

In my lifetime I would love to see these services and plans in place for people with special needs as a standard. Some cities in the U.S. have committed to making every public bus wheelchair accessible. School buses need to catch up to that standard as well. It is time for us to make a decision that being wheelchair accessible and meeting special needs of individuals with disabilities is standard service.