Mike and I are back from the CHARGE Conference and the whole experience was amazing! We learned so much, met some of the families we follow via the listserv/blogs, met some new families and met parents whose CHARGE child is now in heaven. We also had the opportunity to have breakfast with the founding father of CHARGE Syndrome. For the first time ever, we felt like we were surrounded by people who just "got it" and words can not describe how great that feels.
I'm glad we waited to go to the conference until Ben was past a lot of his major medical surgeries. Two years ago I think it would have been too overwhelming and emotional for us. Life with CHARGE is so complex and involves so much - and the conference is a reminder of that. Families have to manage so many major medical issues that doctors don't see very often, let alone all combined in one person: muscular and skeletor issues, neurological problems, feeding issues, deaf/blind obstacles, balance problems, airway issues, behavioral problems, autistic tendencies, sleeping problems and more.
The conference armed me with new information and research from experts in our field to take to our doctors/teachers to help with all the above issues. Some of what we learned contradicted what we've been told from doctors. One major thing we've learned is that Ben IS probably considered deaf/blind even though his vision issues aren't severe. But the issues he has combined with his hearing loss are enough to qualify us for services. Also, we were told not to give up on Ben walking one day (despite what the Ortho doc said). At the least, give him until 10 years of age before starting to equip our house wheelchair accessible. And at 10, if he is still showing the desire to walk, continue to give him more time. That was worth the trip in itself!
We are very grateful to the CHARGE Foundation for the scholarship they give first time attendees to cover the conference fee. That was a huge help! In 2011, the conference will be in Orlando, Florida. We are going to start saving now! The next trip we would like to bring Ben.
6 comments:
It was so great meeting you! Now I am catching up and meeting Ben...what an adorable guy! I hope to meet him in Orlando!
Hugs,
Sandy
We hope and pray you are all able to come to Orlando, it would be AWESOME to meet Ben. It was great meeting you and we miss you guys already.
Hugs,
Crystal and Eva
Amy, Katie is listed as deaf-blind as her main diagnosis for school purposes. If I'm remembering right, I don't believe deaf-blind is one of the options they can pick for preschool diagnosis--they are more general than that? I'm thinking they didn't list Katie's category as deaf-blind until she reached kindergarten. But it did qualify her for vision and hearing services through Hamilton County (an itinerant comes out to the school and works with Katie), and we also had a great evaluation from someone from the Ohio Deafblind Project while Katie was in kindergarten. The evaluator spent the whole morning with Katie's team and really gave them lots of good information and suggestions. Just things to keep in mind for Ben in the future.
Glad you enjoyed the conference!
Amy,
I am so glad that you enjoyed your first conference experience!
Our first was Miami and it was amazing - - truly life altering. We swore after that we'd never miss another, but unfortunately couldn't swing Chicago this year.
We have every intention of going to Orlando in 2011 and HOPE to meet you there! :-)
Glad you are feeling "armed" for more battle!
As for the walking... just remember the similarities between Gracie and Ben...
Both considered to have CHARGE and CP, both with brain injury or "anomalies," both severely orthopaedically and developmentally delayed. She is six... and using a walker with gusto at therapy (not so much at home, yet) and far more cognitively/developmentally delayed than Ben. And, unlike Ben, she wasn't able to attend school until now. I guess what I am saying is, I look at Ben and see endless possibilities... especially when I look at what he's been through and where he is. I look at Gracie the same way... because she never ceases to amaze me and she never ceases to prove physicians wrong! I believe with all my heart that Ben will get there, too. And I know you do, too, but it's hard to imagine if you have doctors telling you otherwise. SO GLAD you took this important piece of armour regarding walking back from the conference!
Oh... and same as Katie, Gracie is also designated as "deafblind" for her primary diagnosis for school purposes. Not only does it qualify our children for more services (more appropriate services), it also allocates more federal and state dollars to their educational needs. Very important...
Aunt Jen said...
I'm so glad you and Mike got to go and I'm sure you left feeling even better that you had gotten so much out of the experience. Great news about the walking and finding out about financial services for the vision and hearing. How interesting that you got to sit with the doctor that named CHARGE. Aaron told me the castle dinner thing wasn't quite what you expected. Can't wait to hear more about it.
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