This summer I’ve done three interviews for college students in education classes who needed to interview the parent of a child with special needs. It’s been nice to reflect back to the beginning and think about how far we’ve come since Callie Anne was born. The most recent one had several questions about special education and care. Some of the questions were about how well those we’ve worked with have served our needs and communicated with us. Another asked what I would like for caretakers or teachers to know. I loved this question and put a lot of thought into my answer. What I finally came up with was hard to put into words. My overall feelings about this, as both a teacher and a parent of a special needs child, are that I would love for those I seek services from for my daughter to realize where my heart is. Parents of special needs children are used to getting a LOT of information about their child. From day one there have been extensive tests, reports, evaluations, and scans that tell us more about our child than a typical parent needs to know. In my case, I spent the first year of my daughter’s life living and breathing for her. I spent every waking, and sleeping, moment with her and was involved in every single move she made. People have different opinions about whether this is healthy or not, but unless you’ve been in my shoes, you don’t get to voice your opinion on this. We did what we knew to do and wouldn’t change a second of it.
After spending a very intense year at home with my child filled with therapies and surgeries, I had to go back to work and leave her in the hands of strangers. This was the hardest thing I’ve ever done and relinquishing that control was, and still is, painful. All of the sudden I wasn’t sitting in on every single therapy session and learning ways to help her reach her full potential. I’m a hands-on mommy and need to know that I’m doing all I can to help her overcome the obstacles she faces. It was a rocky road, but we’ve both survived and she’s making nice progress in all of her therapies. Even without my constant watchful eye!
When she started at the developmental daycare, I inquired about orthotics and if the therapists there thought she might need them. I’d seen some other children with Apert Syndrome with them to help give stability for walking. I am not a therapist and I usually have no idea what I’m talking about. All I know to do is research on my own and ask questions. Apparently, they thought she did need them and she was fitted by an outside company who comes to the clinic to see the kids. This took my husband and me out of the equation. We weren’t there for the fitting. We weren’t there to talk to the company about what they were fitting her for. We have yet to speak to anyone who can fully explain the braces to us. We don’t know exactly what they will do for her. We don’t have the information we need to pass on to her surgeon so he knows what is being done in therapy. Today I was told she would be getting them on Wednesday. When I asked when we would have a time set up to show David and me how they should be worn, to talk to us about them, to discuss the desired outcomes, I was looked at like I was nuts. I cannot be the only parent who has ever asked for this type of communication!?!?! I will not apologize for not believing it is acceptable for my 1 year old to just come home from school one day with braces on her legs with no explanation or discussion. I’m having a hard time wrapping my brain around the fact that my inquires seem so foreign to everyone involved. These don’t seem like irrational requests to me. I have the right AND responsibility to know every miniscule detail of my child’s care. PERIOD. No dirty looks, no sarcastic comments, no exasperated responses are necessary. She’s my child and it’s my expectation that I be involved in her plan of care. In my mind, there is no other option.
We are not the kind of parents who send our child to daycare so she’s out of our hair for 7 hours and so we don’t have to deal with her therapies. I want to be involved. Clearly what I expect is more than is acceptable in this arena, but I’m not willing to back down. I will continue to fight to be an integral part of my child’s development and I will not accept less than that. I do, however, wish that my requests were met with cooperation and a desire to do what is best for my child and not confusion at my interest. But, Rome wasn’t built in a day and I will find a way to navigate this world. I will find a balance between my high expectations and the “system”. I’m trying so hard not to be “that mom”, but the truth is, I don’t know how to be anything else. I wasn’t given a handbook when she was born. I don’t have all, or any, of the answers. I know I need to lighten up in some areas, but there are some where I just have to draw the line. I’m consciously working on knowing the difference. I have a feeling this is going to be a LONG ride, but it’s a ride I can’t and won’t get off.
So, when I’m asked what I wish I could tell special education teachers or caretakers, my answer is this:
1. Parents of children with special needs have special needs themselves. We (or I) need communication. I need to know more about what my child is doing at school than I would if she didn’t have special needs.
2. We didn’t go to school to learn how to be parents of a special needs child. We didn’t study the laws, protocols, and guidelines. You can’t assume we know anything. You do this for a living. We are learning as we go.
3. When we seem exhausted, frustrated, and short tempered, it’s because… we ARE. We have to push extra hard, research for hours on end, and are often met with less than friendly interactions with those who are in a position to help us if we only knew what to ask for.
4. You may do the same therapies, lessons, and paperwork for dozens of kiddos and it becomes rote to you, but we only have 1. We have 1 child to advocate for, to push for, to love. Please forgive us when we get frustrated when we feel you see our child as just another client.
5. Even when we sound like we have it all together, like we know what we’re talking about, like we’ve been there a done that…we are still just scared and worried parents trying to do the best we can with what we have. In the best of situations, we are on the same team working for a common goal. In the worst of situations, we are separate and those of us on the outside feel alone and abandoned.
So….that’s my soapbox for today. I don’t often talk about the negative side of this life we’ve been given. Even on my most frustrating days, I’m honored to have been given the opportunity to be Callie Anne’s mommy and to be living this amazing life. I have to believe that one of the reasons she was put in my arms is because I will fight for her. I will make sure she has every opportunity for success.