Heartache written on a piece of paper

1 May

Before I move on with my story, I have to write about Oli’s mandatory 3 year evaluation for school. They evaluate her to determine her progress and also to determine whether or not she still meets the eligibility qualifications for services. She’ll be 6 years old on May 10th.

O&M was the first evaluation scheduled to be completed. O&M stands for orientation and mobility and focuses on body awareness, spacial concepts, walking and navigating around the environment as a blind or visually impaired child. As a totally blind kiddo, Oli always qualifies for O&M. Her O&M instructor is absolutely fabulous. She is a wonderful woman and teacher and I really like and respect her. She has been with Oli since we moved to Texas when she only was 2 ½ years old.

I have to tell you that, before I get into the results of her evaluation. Before I tell you how little progress Oli seems to have made in the last 3 years. This is NOT, in any way, a reflection on her teacher.

This is just Oli. This has always been Oli.

You see, progress is slow with her. She does do new things and accomplishes goals every once in a while. It just doesn’t happen very quickly or very often.

It’s hard.

It’s so hard to watch your child work so hard and struggle. To try and to fail. To improve and do something new, only to have it slip away. Some of her new skills have diminished and then disappeared completely. At the beginning of the school year Oli was standing up from the middle of the floor all by herself. She would just stand up and every once in a while she would start walking. Just like any other kid. Then it stopped. It stopped completely and she hasn’t done it at all in 8 months.

Is that skill gone forever? Did she have a seizure that wiped it away? Did she forget how to do it? Did something scare her? Why does she lose these skills so easily?

I don’t know.

That is my universal answer when teachers and therapists ask me “Why doesn’t she do that anymore?”

I don’t know. I don’t have any idea.

I wish I did. I wish I could take a peek inside her brain and figure it out for her. I wish I could just look at her and say “Remember when you did that? Or said that? Can you do it again please?” I wish I had an answer. Something better than, “I don’t know?”

That’s not how it works though. What is the problem for her? Why does she struggle through learning simple things? Why can’t she be potty trained or pull up her pants? Why can’t she remember where her nose is consistently or say hi? Why doesn’t she tell me that she wants eggs for breakfast or tell me she wants to play with the bells? She used to do all of these things.

Why can’t she tell me that she loves me?

So many questions and so very few answers.

Is it her autism, her blindness, her developmental delay, her intellectual disability? What is it?

No one can tell me because they all overlap.

No one has any answers, but everyone asks me. Because I’m her mom. I should know. At least, I feel like I should know.

I’ve never known the most profound sense of helplessness since meeting my baby girl. I’ve never felt so out of control on all things that feel like they need to be controlled.

I’m her mom. I should know what’s going on with her.

But, I don’t. I never have.

I’ve read a few other blog posts written by moms of kids with disabilities and they talk about looking at other moms and being jealous of them and their children. I understand that. I try not to compare my daughter to anybody else’s children, mainly because I did that WAY too much in the beginning, but sometimes…I still do. Not in the uuuggghhh…I hate you because you don’t know how good you’ve got it…way. But…uuuggghhh…Look how easy it is for your kids. I just wish life wasn’t so hard for her…way. I’m jealous of other special needs kids who learn things easier than her or kids that don’t have multiple disabilities. But then I HATE myself for thinking that way because it’s ridiculous. I don’t know that life is any easier for them or any harder for my daughter. There are a lot of kids out there in way more difficult situations. These are things that just should not be compared.

I think sometimes I just want her to get better.

I look at my other two kids and it just all comes so naturally for them. They just learn. No big deal. For Oli everything is such a bigger deal. She can’t see so right there, it’s a whole new ball game trying to teach her. And then her body just doesn’t work all that well. It seems like she wants it to do things and it just doesn’t. She has low tone and poor balance. Her arms are weak. She needs a very long time mentally and in terms of motor planning just to figure out where she’s going and how she’s supposed to get there.

It just isn’t easy.

Reading these evaluations…isn’t easy.

It’s always hard to read the same evaluation year after year.

It’s hard to read “She used to do this…She used to say this…but now she doesn’t.”

It’s hard because I know she’s in there. I know what she’s capable of. I just don’t know why it comes and goes. I don’t know how to make it any better for her.

She does therapy and therapy and more therapy. She gets PT, OT, speech, vision, and O&M at school. She gets PT, OT, speech, and hippotherapy at home. I just always feel like maybe there’s more. Maybe there is that one therapy out there that we’re not doing and that will be the key that unlocks the door.

In my brain I know that it probably doesn’t exist. In my brain I know that we are doing everything.

In my heart? I want to do more.

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4 Responses to “Heartache written on a piece of paper”

  1. Karen @ Folk Haven May 1, 2013 at 8:47 pm #

    I’m sorry. I can only imagine how frustrating and heartbreaking it must be to want to help her but not being able to understand why these things happens really makes it hard to know what to do. I’m sorry…but don’t read that as pity on my part. I think you are an amazingly strong, wise and kind mother.

    • mommyhasissues May 1, 2013 at 9:24 pm #

      Thank you so much. I appreciate that. It’s hard. I know that eventually she will get there. It just takes patience and trust on my part. I believe in her. Sometimes it just makes me sad because I know how hard she works.

  2. idontwantdabda September 9, 2013 at 12:21 am #

    Have you looked in to alternative healing therapies? Chiropractic care can aide a lot in the way of mental and physical development. It can even help control allergies. Another idea (which I’m not sure how you feel about this sort of thing) is Reiki. With Reiki, you’d find and see a Reiki master who will evaluate what’s going on. You could tell them about the cognitive difficulties, anything, as well as the obvious that she has setbacks mentally and is physically unable to see. The RM will have her sit or lay down (Whichever Oli can tolerate best) and hold his/her hands above certain areas of the body. What is meant to be achieved through this is that the energy channels in the body will be cleared of blockages, thus flowing as they should. It may seem a little far-fetched. But in a situation as yours and your family; I would want to give her the best chance at healing, even if it seems a little non-traditional. Hope that helps a little! I really enjoy reading your posts and learning/growing as you all do. 🙂

    • mommyhasissues September 9, 2013 at 1:59 am #

      Thank you for this suggestion! I’m always willing to try new things and I would never be against trying something like this. For many children these therapies work wonders. Right now my family is not in a financial situation to be able to pay for any kind of therapy that her insurance doesn’t cover. These types of therapies are not covered by our insurance. Maybe some day when our situation changes this would be a very good option for her to try. Thank you again for this!!

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