LIFE WITH SPECIAL NEEDS
It’s not secret: having a child with special needs is hard. Not a little hard, but really hard at times. There’s the physical toll it takes. As a parent you’re constantly going here and there, trying to make sure your child is getting the best that your area has to offer. And then there is the emotional toll. It’s exhausting mentally and emotionally the fact that you have to work with your child differently than a “typically developing” child.
It causes a range of emotions from jealousy, loss, frustration, anger, and sadness at times…and let’s not forget to mention the effect it has on a marriage. My husband isn’t around a whole lot, so he’s not really involved with the process of what it takes. Don’t get me wrong, he tries to be involved as much as possible. But it’s really difficult with the schedule he keeps.
CONSISTENCY IS KEY
One of the biggest helps in the area of special needs is consistency. Consistency is everything. Just like typically developing children, children with special needs thrive on a consistent schedule. Take them out of their normal environment and switch things up? It could cause some issues. With that said, living the military life is living with change almost constantly. Very few things are consistent, and that can cause some issues with kids.
I feel blessed that we haven’t had to move very much over the last few years (military much…most military families change duty stations every 2-3 years…some even more frequently.) We’ve only had to PCS (permanent change of station) three times in 18 years. It’s still been hard.
So when we get some place where we can actually have a schedule and think we are actually going to establish some roots…I get serious about keeping things “the same”. When we got back to Savannah, I was happy to put down some roots, but as Savannah Chatham County School System would have it, there would be no consistency. It was nothing but trouble from the beginning.
THE SCHOOL DISTRICT FROM HELL
We moved l back here in December of 2015, and Jac started school in January 2016 here. She spent a month and a half at that awful school (despite me telling them it didn’t meet her needs according to her IEP) only for her to be moved to another school for the remainder of the school year…a month and a half.
She was then transferred to another school where she began to have therapies taken away. Because of this, we had to seek private therapies which had to be scheduled either during the school day or extended our day to very late. It certainly added a lot to our days and made the days longer and our schedule more hectic, but for the last two years, the people we have seen at therapy have been Jac’s constant.
TRYING TO KEEP THINGS THE SAME
So when we looked at the prospect of moving within the local area I told my husband that it was important for me to keep the current therapists that she has. We looked at a beautiful farm that was within our price range, but it would have made my drive into Savannah over an hour. With me coming here at least three times a week, that didn’t seem like a good option for us.
When you have a kid with special needs, it affects every decision you make more so than when you don’t. It’s frustrating and overwhelming at times. The Army also has special requirements that are supposed to “help” you when you have a child with special needs.
THE ARMY ‘TRIES’ TO HELP
If your child has an IEP or an individual education plan, then you are required to sign up for EFMP or the exceptional family member program. It’s not limited to those with an IEP, but of course we fall into this category. You are required to jump through hoops to keep the information up-to-date. And you’re not really reaping any benefits from the program. (At least, I’ve yet to see the benefit of enrollment.)
So with all this, I’ve made it my mission to try to create as much uniformity and consistency to each day as much as I can. It’s hard. I mean, I’m a creature of habit, but things need to get done and children need to get raised. I think all children do better with a schedule and consistency, but especially those with special needs.
This blog doesn’t really “solve” a problem, but it does help shed some light onto our daily lives and how we try to cope. If you’re new to the world of special needs parenting and/or new to the Army side of things…just know you’re not alone. We struggle daily. Sometimes it’s all you can do to get through a day, and that’s okay. There are some things we can control, and those are the things you need to focus on. Know your rights. There are special laws in place to protect you and your kids…But also know that administration often doesn’t listen or doesn’t care. You usually have to press for the things you want and need. I don’t think I’ve ever met another parent who has a child with special needs who hasn’t had to jump through hoop-after-hoop. There’s support and there’s love in the special needs community.
Until next time…