Things that take your breath away

A few weeks ago, a friend had us over to swim at her house. We have spent some time over at her house this past month, and the kids swimming skills have certainly increased while doing it.

My friend is a single parent. I have found this event to be so commonplace, that I don't think much of it. And, well, I should.

Well, Zach is quite the little swimmer let me tell you. He loves to put his face in the water and practices holding his breath as long as he can. He kicks up a storm. He has no problem jumping in the deep end and loves to continually practice front and back floats. We have a version of the floaties that allows us to just let him have the run of a pool without worrying about him going under. And, alas, he watched his sister and even started going of the diving board. I always think of Michael Phelps' mom talking about how he was ADHD and how she could use his intensity/hyper focus to an advantage. Will I be able to do that with Zach one day?

Anyhow, on the way home Sophia asked where her son's father lived. We told her he had another home. She then asked why some mom and dads don't live together. I tried my best to explain it, as carefully as I could, but very clumsily. She went on to say that she has heard Steve and I fight, a lot, and she was concerned that it would happen to us. The breath was taken out of my lungs as if I had just fallen out of a 40 foot tree flat on my back. There was no good way to respond to this.

Marriage is tough work. Kids add stress and loads more work. Disability adds immeasurable more work and uncertainty. Dealing with the bureaucracy because of the disability is more work than it took to get the Apollo mission space bound and aggravating. Holy crud it is work.

If there is one thing I know, we must do what is best for Zach. And sometimes that means we must do what is best for the family. Sophia should not be fearing our divorce amongst the negligence she already has to deal with. Steve and I should not be in the state we are.

For a plethora of reasons we have decided to pull Zach from his school program. I am not happy in this decision, I don't think there was a perfect scenario at all. We pulled him for various reasons for him and for various reasons for our family. It was an incredibly hard decision, and has left me personally overwhelmed with emotion and a huge burden, yes I said burden, to make sure he gets some semblance of appropriate services here in the home. This is not his fault. This is not autism's fault. This is mostly the problem with those who should be the responsible parties for getting appropriate services for Zach and couldn't stand up to the plate for us.

I am on the phone or computer nearly all day trying to figure things out. I had no vacation, even though we went away, because of all the calamity with this.

As much as we have liked the people in Zach's program, and thought the program used great principles, it was not intense nor individualized enough for Zach. I often thought if Zach was either lower functioning or higher functioning it would have been perfect. We tried to work things out with the program and the school district, but although the program attempted to make modifications for us, we grew weary as the days were clicking away to when he began, and we had yet to meet personnel from the program. Steve had always wanted me to do a home program all along, and when we were basically told that our wish for Zach to have a 1:1 aid would not be able to be put into his IEP it seemed to push a button for us. The program was going to attempt to staff a position that would be almost like a 1:1, with the exception that it couldn't be written into his IEP, and it sounded great. I think the sad part about our journey into the world of special needs is realizing the necessity to have everything in writing. We have been hugely disappointed on this journey already. A few well intentioned people have made promises that they were unable to keep. And several people on the sly have made promises they never meant to keep. Because of this, we are very gun shy to trust anyone without things in writing. We need to be able to point to something that shows we all agreed to something. We just couldn't be assured that this was going to happen. We need that legal recourse

When we pulled Zach from his school program, we had made prior calls to therapists and agencies to see if we would have a program similar to his school program that could be run from home. This is an extraordinary measure - the school district is responsible for procuring services, but we wanted to help the process along. Well, we have managed nothing for the most part, and although it might have been lack of skill that in the end got in the way, it wasn't lack of trying. People who are in the position to help us are not willing to go the extra mile to do so. That is the hardest part for me to figure out. If I was in the position to help someone out - and I knew I could make a difference in a child's life, I would bend over backwards. In fact, I have done that not only for my own children but for some of the families who I have helped advocate for. And it isn't even my job!

I have had people tell me they want to help us - I tell them what we need help with, they then back away. I offer money and am told they don't want the money - they aren't in it for the money. Sounds unbelievable, right? The truth is, they don't want to help either, they just wanted to hear themselves say they were going to help. Wanting to do something and actually doing something are very different things. The truth is I offer money to everyone who helps us because the level of work needed for Zach is hard. It is tiring. It is lonely. It doesn't get you a lot of praise. It can feel futile at times and let's not forget it can be gross at times. But it's what needs to be done. We all need motivators in our lives to help us get through the tough stuff.

I am saddened by not sending Zach to school. The school had a nice program, it just wasn't right for the level of intensity and individualization he needed. On top of missing some of the great professionals that we had to work with, I believe he liked it. Do you know how hard it was to take something like that away from him? It's kind of like all the food we cannot let him have because we know it isn't right for him. I want to give him things that he wants of course, but I have to deny him those things for his own good. I just wish I didn't have to deny him so much.

Having Zach home has lessened the stress around the house. We are no longer wondering what is going on at school. I feel as though I can follow through with what I should be doing with him better. We don't have to worry about him getting food he should not have. Steve is able to concentrate more on work since he is not helping in the transportation of Zach to school and helping prep breakfasts and lunches.

For me, personally, things have become more stressful. Getting him the appropriate services is extremely difficult. But I keep on thinking that one day I will be glad we did it. He has another 13 years to enjoy the school experience. This does allow some more free time for just him and me, and I look forward to taking advantage of that. I am hoping that Steve and I will eventually be less stressed out, and Sophia will not have to worry that the constant tension in the house means that Momma and Daddy are going to live in separate houses.

Zach has made progress. He is saying more spontaneous phrases. He is learning to ride his tricycle independently. He can identify more objects than before. He is sitting better for stories and helping to point out pictures in books. He is learning to get himself dressed and undressed. Sleep is another story for another post. We are still working on potty training, but can at least claim that he is schedule trained for peeing. I will take that victory, but I won't retreat, I will forge ahead through the smoke cloud.

One day I will be able to breath more freely again.