Cash back

So I am going to write something now that I never thought I would. But I try to be honest in this space and today I had a sort of amazing moment and it would be weird to leave it out of this record of our lives.

It is Mother's Day. It was not an easy day - lots of rain, some arguing with Mom, some frustrating events. But viewed in another context, it was a blessed day - I got to be with my Mom, I got to be with my kid, I got to talk to my AD, Dad, and sister on the phone. So really, that makes it a good day.

And I was sitting in church today when suddenly it came to me that Cash is my reward. REWARD. A strange word, but it felt like it came from God. I often think of Cash as a blessing - but today it came to me clear as a bell that he is meant to be a reward. I don't know for what, but it was also clear he is supposed to lead me towards being a better person. That his existence has already made me a better person, along with everyone he touches. And that is very rewarding. It was almost like I felt I had been picked to experience this special joy, the joy of this special child who attracts love and goodness to him. The experience of being Cash's mom is often hard, sometimes brutally so, but today I knew that I had also been rewarded in a million ways by his presence in my life. And I know, I really do know, that it sounds a little crazy to say that message came from God, but it feels like it did.

A smile costs 1 cookie

I spent all day puttering around Greenville Hospital in cases. It was fun and interesting, as always.

Today Cash did something new. He never smiles when I ask him to and his teachers made a comment about his refusal to smile on command at the IEP meeting yesterday. So today I was holding a cookie and asked him to smile and he did. Multiple times. I am really pleased. I know it is small, but it will make it much easier to take a decent picture of him!

OMG, I had to pay two months of our COBRA health insurance today. Insane. We're talking over $1800, since it went up from $855/month to $963/month. And I can't let it lapse since Cash is a bear to get covered.

Ick Eww Phoo

Ugh, what an awful day. The big awfulness, among quite a few minor and moderate awfulnesses, was an IEP (Individual Education Plan) meeting at Cash's school. I remember Cash's first IEP in Aspen - I was worried sick that his teachers and therapists would spend the whole time telling me how "un-normal" he was. But instead, we started the meeting by listing Cash's strengths and it proceeded on to discussing what we wanted to work on and how they could help Cash. After 3 years of working with Cash's Aspen Elementary team, I didn't dread IEPs at all and looked forward to them as a chance to check in with all his therapists.

Today was not like that.

The IEP meeting here in Greenville last fall was hard - they operate very differently here, and I felt like Cash was just another special needs kid - but I have appreciated his teachers' and therapists' expertise over the year. I mentioned a few posts ago that we have become accustomed to the greater resources that are available here compared to Aspen. I still feel that, and I know that his team at school is kind and well-educated and generally does an excellent job with Cash. However, they run a terrible IEP meeting. It is overwhelmingly impersonal and negative. I understand that they have to do alot in a short period of time in order to meet state requirements, but I cannot believe that they could not do it with more sympathy and kindness. I am the parent of a severely special needs kid - I do not need to hear all the ways he is not doing what other kids his age are. I KNOW that. But all the therapy in the world isn't going to make Cash normal, so I need to focus on all his blessings, on all the things he can do. Again, that does not mean that we do not push him and strive, but it does mean that it offends me and hurts me when people act like he is failing. I know school is designed to measure achievement, but frankly Cash gets to opt out of that, in my opinion. He can only be measured against himself.

So not only was the IEP a two-hour list of the things Cash is not doing, but then at the end, I decided to tell the group that there is another way to conduct an IEP, one where you still report on and set goals, but you do it in an encouraging and positive manner. I think the people in that meeting today are truly a smart and thoughtful group of educators who never meant to upset me - hopefully this will encourage them to look at new strategies for doing IEP meetings. I of course got emotional, but I am glad I said it even though it was very hard for me. I can only hope that maybe it makes an IEP easier for some other parent in the future. 

Angels and fleas

I am currently reading "Expecting Adam" by Martha Beck, written about her experience with her Down Syndrome son. It is a fascinating little book, funny and mystical. Here is one quote that I feel like applies to Cash: "Adam has angels like a dog has fleas. He came here with them, and the more time you spend around him, the more likely you are to get them yourself."

Resources and therapies

Living here in Greenville has made it obvious to me that we need to live somewhere with adequate resources for Cash. Aspen was lovely when he was little - he had the kindest, smartest, most wonderful therapists and got a lot of personal attention both at therapy and at school. But other towns of Aspen's size just don't seem to have the same quality of therapy - we have to be someplace bigger. He has gotten great care here in Greenville, at Shriner's and at Kidnetics, and that has shown me what is possible. So Cash's school and therapies have become a major consideration for me in considering what job to take.

Plus his breathing is so much better now that we are at a lower altitude.

Mom and I have been on a cleanse recently. It is entertaining, in a hungry sort of way.

Normal

So I woke up last night at 3:30am after a minor nightmare, looked over at Cash's sweetly sleeping face, and got a little sad. Sadder than I have been in awhile. About him, I mean. I think it is partly because we spent yesterday evening with a cute family with an adorable little boy - I couldn't help but compare him to Cash a bit, even though I really really try not to do that. I try to focus on Cash as himself and as my normal. Sometimes I think I trick myself into thinking he is not as delayed/slow as he is. I think it is RIGHT that I focus on what he does, not what he doesn't, that I celebrate his accomplishments, not fulminate on his deficiencies. But that sort of means I have a skewed viewpoint, and every once in a while I remember what normal kids are like. It is hard.

Cash is getting his two new front teeth. How are those huge teeth going to fit into his tiny mouth??

I am going to turn down a job tomorrow - this is the second one. It's just not quite right.

Six and 3/4

Cash and I are on our way to a photo shoot. Alicia who works at the front desk at our apartment complex has offered up the services of her professional photographer husband. She said she just wanted to do something nice for us. Cash has a new tooth coming in, so I'm glad to be able to document the end of his "baby vamp" stage properly. Now ---- what to wear??!

An update on Cash's typical day: wake up with Mommy at 7:00am, be rushed to the potty to pee (as long as Mommy is awake enough to move that fast), get dressed, eat cereal for breakfast, leave at 7:40am with Gramma or Aunt Dianne for therapy at Shriner's Hospital or Kidnetics, get dropped off at school to hang out with Ms. Jan and the kids, take the bus home at 2:30pm, snack, goof off, make sure all his toys are working, cause trouble, pester, play, eat dinner at 6:00pm, take a bath, go to bed around 8:00pm. His current favorite toys are his iPad, Blue Music, his piano, my clock radio, and anything he shouldn't mess with. His current favorite food is chips, but he eats everything. He is being a pain in the neck at bedtime, but he is sleeping quietly and calmly. His breathing is the best it has been his whole life - so much so that I am thinking of taking him off his maintenance meds. Overall, he is thriving. 

From AA Milne:
When I was One
I had just begun
When I was Two
I was nearly new
When I was Three
I was hardly me
When I was Four
I was not much more
When I was Five
I was just alive
Now that I am Six
I'm as clever as clever
So I think I'll be six now for ever and ever