Wednesday, July 17, 2013

Chimp house

Max had his first feeding therapy session on Monday. He was evaluated several months ago, but it takes time to get a slot on the schedule.

When he first came home, he would only accept blended food. Textures were very scary! I'm proud to say that I haven't blended any food for about four weeks now. He is eating a mostly regular diet, just chopped really small or soaked in broth, juice or milk.

So, the Max's first therapy session went really great. He's made a lot of progress since his evaluation and is ready to learn even more. Next step, chewing!

Drinking is still a struggle. Thankfully, Max is doing better with a cup. This is a sippy cup with the stopper pulled out. The liquid runs out because he has no idea how to suck. So sad, but way better than drinking from a spoon like he used to do...and like the kids in his old grouppa still do. I have to laugh when I remember giving him juice from a spoon on our long haul flight home from Ukraine. We do what we must, right?

In other news, our school books have started to arrive...which is why my living room looks like a chimpanzee house, if you've ever witnessed one after the apes are given boxes or paper to play with! It is great sensory fun to play with the gobs of brown paper stuffing that we find in the boxes of books. This is the aftermath.

I worked on some school enrollment forms today. I scratch my head sometimes. Due to paper costs, I was asked to sign a release saying I would accept an online school district handbook instead of a printed one. However, they kindly included a printed handbook in both of my packets! Also, there was eight (8!?) medication release forms in each packet. I didn't need any of those 16 pieces of paper. So much for paperwork reduction.

We are in for a fun year. Some of my kids start school on August 13. Some start on August 28. Two different district schedules are bound to drive me insane. If I worked outside the home, it would be disastrous. God willing, we will find a place for all of our children in our home school district one of these days.

Sunday, July 14, 2013

It's good.

Sundays are hard. Just plain hard. I love going to church. I love to meet with my brothers and sisters. But by the time I get everyone up and fed and clean and dressed and out the door, I'm usually feeling cranky and mean. I find myself asking questions like, "Is it worth it?" and "Is this a season? Will it get easier?"

After church today, the families and volunteers involved in our special needs ministry met for lunch and a discussion about sensory processing disorders. The room was nuts, mainly because of my kids. But, because I was in a room full of people who "get it," I didn't get anxious like I normally would.

Do you "get it?" By that, I mean, do you understand that kids with different needs and challenges are not something to fear? Do you understand that people with different needs and challenges have a complete range of feelings, emotions, hopes, fears and more? Are you uncomfortable about people who are different?

Today I heard a story of one of my boys' teachers/nursery workers. This person was afraid of my son with Down syndrome at first. Growing up, this person was never exposed to anyone with special needs. Kids like mine were kept separated from "normal" kids. This person must have panicked the first time I dropped my boy in her class. I was oblivious, of course.

Thank God for my wonderful sisters at church who have stepped up to help my kids get the most out of their church and Sunday school experience each week. Over the past few months, thanks to our awesome helpers, this particular teacher/nursery worker has had their eyes opened to the miracle of watching my boy come alive, learn to interact with other children, and grow in faith. No fear anymore. He's just another kid now.

It's hard. But it's worth it.

Maybe it's not easy, but it's good.

Thursday, July 11, 2013

My life these days.

I sat down to write this morning. But, the floor under the desk was dirty under my bare feet. So naturally I grabbed the broom and started to sweep.

Of course, one can't just sweep a little area. One must get into each corner, push the dining chairs aside, toss the stray toys into a basket and such. Once the dust and dog hair was swept up, and since I already had the broom out, I swept the back patio as well, so the kids could play outside.

Of course, I had to pull a few weeds and set up the umbrella that had been blown over by the ever present Kansas wind. As I grabbed a puppy by the collar to stuff the rambunctious thing into his kennel so the children could come out, I noticed that some naughty child had locked me out of the house. Ha! My life.

Today is the last day of ESY, extended school year for Theo and Max. This is the last of my relatively quiet mornings for the next month and a half. How I have not been able to sit down and write much for the past five weeks disappoints me. Someone or something always needs my attention, and when it doesn't, I don't care to lift a finger to even type.

Jordan broke his arm at camp a few weeks ago. I have finally come to accept that I was not cut out to be a doctor. As much medical knowledge as a person can accumulate and access, there is nothing that can prepare for the vision of a caved in arm. You are either born with the capability to handle that or not, it seems to me.

Ralph is getting a full and independent educational psych eval. We met with the doctor earlier this week. Ralph was a rock star as usual. She was baffled that our school district is recommending a special ed classroom for him at all. But they are. And that's where he'll be this year barring some miracle. So I keep fighting for him.

The hard thing about having children with special needs is not the children with special needs. The hard thing is dealing with a world that is fearful and not accepting. Everyone who has dared to get close to my kids, dared to love them, dared to step into our world will tell you that they are better people because of it.

Theo saw a really sweet (and capable!) eye doctor recently. She said that she loves to see kids with special needs because they force her to think outside the box and get creative. I guess not everyone wants to work that hard.

Theo and Max do not start school until the end of August, almost a full two weeks after everyone else in our school district. Why? Simple. Theo and Max are being shipped to another neighboring school district this year. Their program was moved to our district last year...and moved out again for the next. What is the logic in that? In addition, the two district calendars do not coincide. There are 50+ days over the course of the school year where one district is in session and the other is not. If I were working outside the home, I would have to take months of vacation time, just to care for my school aged children. Gotta keep fighting for them to go to school with their neighborhood friends...and brothers and sisters.

Well, the dog got out...and someone needs to potty...