Family Links

I am so glad that Brian and I got to attend the Family Links conference! It is a conference for families, caregivers and professionals who work with or have someone that they care about who has a disability. Lisa, who has her own set of challenges, has been my friend since high school. She told me that we really needed to go this year. She and her husband were planning on attending with us, but as things happen when you have a kid with special needs, something came up and they were not able to make it. It is put on by the Utah Parent Center every year. Their link is on my sidebar.

The speakers were great. The food was AWESOME. The price was amazing, and they have scholarships for people that can't even afford to pay the menial cost. It was a real "cup filler" for us. Sometimes it is really hard to accept that two out of three people in our family have a disability. Cole and I look and act normal the majority of the time. It is a hard concept to wrap your head around when everything looks just fine. Sometimes people close to us even have a hard time saying, "disability, epilepsy, syndrome, disorder" and other hard words. We just have seizures...period. The opposite is true because those seizures affect our life to the point that it is a disability.

I am very high functioning at this point in my life. Cole not so much. I heard something really powerful at the conference. Someone said that disability is something that everyone has to go through. We're all going to die. Most of us will age. Sometimes we break things, have surgery, become ill and can't do everything for ourselves. It is something that everyone will have to experience, just not at the level of people who have an actual diagnosis.

We learned a lot about keeping our relationships intact, which is something that is so hard to do when you have this problem (Epilepsy, Down Syndrome, whatever) in the forefront of your mind. Friendships, spouse, and familial relationships suffer. We even got a free book from the keynote speaker because we registered early. Yeah for free stuff! We also learned about some great programs in our state that we never would have had a chance to otherwise. We talked about legislation for the future and the reality that programs like DSPD are so under-funded that the only way things are going to get better is if the parents start kicking and screaming.

We learned a lot about parenting and were able to mingle with others that 'get it'. The snow cones, Cafe Rio, Maggie Moos and other stuff didn't hurt :) I am so glad that even though we had to round up three baby-sitters and move our other schedules around...we went. Both of my sisters that live out-of-state are here right now, so it was hard to not spend time with them. It was important for Brian and I to take a 'time out' so to speak and we really talked a lot about the next couple of months and how we are going to try and prepare for the struggle that lays ahead.

We unfortunately came home to reality. Cole had a visit from his friends the paramedics less than an hour after we returned home. We didn't have to go to the hospital, but he's still not doing so well today. I'm just glad it happened after we got home. Who knows where we will be living next year, but I loved the conference so much that I might just come back for it.