Yep, this makes plenty of sense to us...so much to consider when it comes to educating your kids. Especially if they have physical or cognitive challenges. My husband and I are advocates of smaller, more intimate schools, particularly of home schools. We belong to a thriving, very dynamic home schooling community in southeastern Arizona. It took three years of research and prayer before deciding to home school (there's a lot to it - it wasn't an easy decision, for sure!). That was four years ago, and we and haven't looked back. It allows us many freedoms - customizing our children's education to their own learning style, the freedom to not be tied to a desk all day or a set schedule, the freedom to let our 9 year old son (who happens to have Duchenne) to sleep in (to a reasonable time!) if he's super tired, etc. And despite a clinical diagnosis of dyslexia and dyscalculia, he is now reading at a 6th grade level (we conquered the dyslexia!) and is well on his way to defeating dyscalculia. He's a happy, gregarious, smiling kid who takes life by the horns and lives it to the full. Home schooling is definitely not for everyone, but has been an amazing experience for both myself and my husband and I's kids. Something to consider, anyway. We wish you well in your decision, and may God bless you and your family!
At 12 I started my son on home instruction with a teacher. He requested it. He couldn't walk long distances at that point and didn't want to use a scooter in school. He did well at home. But of course he no longer had the social interaction.
I knew it was time. I would watch him walk with his para down the long hall way for years. As I watched this day I saw how he was struggling and stopping . It was too sad and painfully to watch. I ran up the hall and took him home. I spoke to him and explained he could use his scooter to go. And his reply was " I walked into this school and I will walk out" He said " I will not use a scooter to go" So I knew what he wanted and I gave it to him. He had some good teachers at home and did very well. he did not graduate. But he is smarter well beyond his years. No one knows how long they will live but with Duchenne we know how he will live and how fast time goes by and I chose to make every moment of his life as easy and happy as possible. I took him out of recess and gym when he was in school and he came home for lunch. He didn't need to be reminded that others were physically active and he wasn't.
Our kids prefer home schooling, but even if they didn't, we believe it's our responsibility as parents to do what is best for them (even when they don't like our choices). We respectfully disagree with the statement that 'research shows inclusion in the mainstream education system is preferred' - our research has shown the opposite - that a smaller, privatized education (home school, charter school, private school) yields happier, more educated, better grounded children who are better able to withstand the rigors of our culture upon graduation - making a positive difference in the world. And like you say, when you've got a devastating disease like Duchenne, how and where your son spends the majority of his time will make a huge difference in his quality of life.
We continue to wish you well as you work through which choice of education will help your precious son survive and thrive!
Candice I apologize for the late reply. Had written a long response last Friday and accidentally deleted it...erg technology is good but sure annoying sometimes...
I must clarify too that I'm Andrea, Shawn's wife. I should have made that obvious to begin with, I think this is the first time I've written something on this website but that's still no excuse.
Your son falling asleep with such pain in his young heart made me cry. I'm so sorry for him and for the pain you're going through and all the heartache.
When we first started feeling the call to go with an alternative school, I had no idea where to start. Went to Barnes & Noble, wandered to the education/kid section, and bought a couple books. The content intrigued me, so Shawn and I started doing some more research - asking friends who send their children to private schools or charter schools, searching our local area for info on home schooling, looking deeper at how the public education system operates, etc.
There's not just a few publications we found. Instead, we discovered so much information it was overwhelming at first. Over the years, we've have read countless articles/talked with so many friends and acquaintances/been to local and state-wide conferences/joined many groups/experienced first hand the benefits of smaller classes. In a nut shell I suggest doing as we did - heading to your local bookstore or using Google or whatever search engine to found out more. And go from there.
One thing that helped us discern truth from falsehood in our research is our faith. We realize the church is a beautiful mess, that though there's so much good in it, there's also so much wrong with it, and that Christianity often gets a very bad name (with very good reason). We also know that it can be easy to simply accept information based on the source - i.e. taking something at face value just because it comes from Christian group so-and-so. We prayed for discernment, and were so granted it. I don't know where you stand with God, if you believe in Him, etc. When our son was diagnosed four years ago (he's now almost 10) I screamed at God, hated him, called him names, didn't talk to him at all for a very long time. I was told by well meaning people 'you can't do that! you gotta have faith!' "Really?" I wanted to shout. "You have no clue what we're going through!" Don't ever let someone tell you that it's not okay to scream at God, cuz that's a total lie. He's big enough to take it. And He's big enough to be at your side every single second of every single day as you and your family continue this journey. Though I still get overwhelmed and saddened sometimes by what Duchenne is doing to our son and how it affects our entire family, friends, even complete strangers that we meet, I've learned to trust in Him more than I ever imagined. But I would be honored to pray for you and your family. For God to make it clear to you what the next step is with regards to your sons education, for your son to be part of a school where he doesn't have to shout to be heard, for his heart to be happier as he continues to learn how to cope with Duchenne, for his life as he grows and experiences the challenges this devastating disease brings, for you and your mama's heart that's breaking for your beautiful son. Your son is going to make an absolutely huge difference in this world Candice, in ways that he never could have if he didn't have Duchenne. Shawn and I believe that with all of our hearts. We've already experienced it.
We continue to wish you the absolute best as you work through what will be the best education option for your incredibly created, amazing son.
My son will be entering kindergarten this fall so I dont have personal experience here but i read this blogpost and found it helpful. Do you think the kids would be receptive?
Also, MDA will go to schools and talk to the class and staff for you. Another mom said this was helpful with her son.
What a great article Stacy. Thank you for posting that! The overall site looks to contain lots of helpful material. I spoke with our son's Cub Scout den a few months ago. Quite similar in how this gal proceeded - I had time for each kid to run up and down the stairs with a backpack full of rocks strapped on (these boys are 10-11 years old, very active, and physically strong). After acting tough for the first few runs they began to slow down and were ready to listen. I showed BrainPOP's video clip on Duchenne, talked more about what it means, and showed the den a copy of an MDA pamphlet that our son happens to be in (they were impressed - doesn't take much to impress a bunch of boys!). Some of the boys volunteered physical difficulties of their own and we discussed those too, it helped take the spotlight off of our son. The entire group listened well, and we ended the meeting on a very positive note. Kids are kids and quickly move on to the next thing, but as they grow older and more self-aware/aware of others around them, I've no doubt one or two kids with strong empathy will always be there to help those who are physically challenged.
Hi. My son Luc is 5 years old and here in Australia he has started prep. He loves going to school but he struggles to concentrate and he also struggles emotionally. My little gentle boy has started to hit and scratch people, He has a very short fuse and because of the cognitive difficulties he does not always understand what others are saying and doing and gets very defensive. I am also investigating the options of special needs schools although the schools I have seen have children with a range of disabilities and I am afraid to put him in such a school ahead of his time as he is very mobile. I want him to be understood and not have hardships in that way and be in trouble all the time in the principals office. He has an aide and the school are really kind and helpful but I am not sure that this is the best place for him emotionally.