Labels

I know I haven’t posted since we went through the whole school debacle in May. A lot has changed since then, but a lot has remained the same. Since we have worked on Ellie’s sensory issues for the last year and a half and got her more regulated there have been some underlying issues that still have not gone away and brought concern for her team and I. We sought out a clinical diagnosis to get a better idea of what we are dealing with and how to help Ellie. I am not one to get caught up on labels but what I do know is that in order to receive the services for your child you must have a clinical diagnosis. For reasons, some of which I understand and some that I do not, we have to label those that we love in order to get them the help they need. Since psychological or neurological disorders are not something you can run a simple blood test for it makes things a bit more difficult to find the right doctor to diagnose your child. Our case was no different. Ellie is so high-functioning that she doesn’t check all of the boxes for many disorders, but some of the disruptive behaviors and social interaction issues are still there regardless. Another giant problem is that in our area around Waco and even up to an hour and a half away, there is not an adequate amount of doctors that can diagnose our children. Some of those having weight lists up 12 to 18 months long. When your child is in crisis or you have to get them the services they need, a year is just too long. We were lucky enough to find a neuropsychologist in McKinney, Texas to get us in within a month. She did an absolutely amazing job and gave Ellie a very thorough range of tests to determine what was going on with her. Knowing how hard it is to diagnose girls with an autism spectrum disorder, and the fact that Ellie is extremely verbal made this even more difficult. In the end, with my parent evaluations and the doctors tests, Ellie was given the diagnosis of level one Autism combined with ADHD and sensory modulation issues.
Instead of feeling disappointment or sadness in this diagnosis I felt such great relief and empowerment. I knew that by having this we would now be able to get her the ABA therapy that she needed and the insurance company may possibly be able to cover some of the expensive therapies we are doing on a weekly basis.
I know some people would be concerned with all the labels just put on Ellie, but my perspective on this is not unlike so many others. My daughter is the same sweet, quirky, energetic and talkative girl going into that appointment as she was coming out. The label for Ellie is more of a means to an end, as it is for so many. It gives me an ability to get her resources, but also it gives me a place to start researching different aspects to my daughters behaviors that I never could understand.
One thing that really frustrates me, and I’m sure I’m not alone in this, is that although I have a clinical diagnosis from a doctor the school district requires their own evaluation to be done. My daughter went through five or six very lengthy tests to come up with a diagnosis, so it makes little sense to me that a diagnostician from the school district is somehow, in their eyes, better qualified to make a decision on whether or not my child needs to receive autism services through the school district. This seems like a colossal waste of resources and money for the school district. Not to mention, the neuropsychologist I took my daughter to is a DOCTOR and is actually qualified to make those diagnoses.  If it doesn’t effect the child “learning” then it is unrecognized by the schools.  There is a largely significant amount of “learning” that children do at school that has nothing to do with the academic side of things.  Sometimes I feel like this goes unrecognized. The need to do further testing at school just seems like a waste of time and money to me. I understand that by law they have to do this, but there are some laws that just need to be updated or changed.

We are still in limbo with the school district saying exactly what kind of accommodations or services Ellie will qualify for so I don’t have much news on that front. As of now, it seems like she will start kindergarten with little accommodations and see how it goes.
The more I get into the special needs community the more frustrated I get. These families go through so much that they shouldn’t have to go through. On Friday, I was lucky enough to travel with several of my friends and members of Ellie’s team to a Autism and Aspergers conference in Dallas. We had the privilege of listening to Temple Grandin speak. She is absolutely an amazing resource for parents and educators on how to help children with Autism and Aspergers succeed in the world. Inspite of and because of her Autism diagnosis she’s extremely successful and her ideas and inventions have revolutionized the cattle industry. Although I know nothing about cattle, it is absolutely inspiring to see how she views the world and how her mind works versus a typical person. It gives you insight into how we can better serve these children. I came out of this conference with so many insights and tips and tricks on how to help Ellie and foster her strengths.
It was hard even after going to this inspiring conference and listening to some of the groundbreaking people in the world of Autism speak and then have to think back to the other struggles that we deal for Ellie that have nothing to do with her personally. On our way to Dallas I called a private school that someone had recommended as special needs friendly. I called and I told the person on the phone Ellie’s story and their response was “We are not equipped to deal with children with special needs at this time.” On one side of the coin I understand that. I understand what I am asking. I am asking them to have additional staff and resources to be able to take on these children. But what I don’t understand is the lack of schools that are willing to do this. Inclusion does cost more money, and it does take extra work, but these children are the future of our country just as much as your typical kid. Some of the most successful people in the tech, scientific and engineering fields are on the spectrum. I’m sure they weren’t easy as children either. More importantly, these kids have endless potential and deserve everything we have to give.
More and more children are being diagnosed with disorders like Autism every single day. Research shows that one in two children will be diagnosed with a neurological disorder or on the Autism spectrum by 2025. If that’s even half true then that statistic is mind-blowing. How are we as communities preparing for this? We aren’t. I know so many parents whose children have been kicked out of typical schools because they just can’t handle them. We really have nowhere in our community that can take these kids. If you have a high functioning child the public schools won’t take them until kindergarten. And even then we are still at their mercy because they won’t accept an outside diagnosis. If all of these disorders are on the rise we have got to do better. We have got to come up with more resources for these parents and more schools that are equipped to handle these children. Being able to go to preschool or a Mother’s Day Out is crucial to their development. These children need to be with their peers to learn how to interact with the world appropriately. If they are at home with their mom and dad until they start kindergarten we are doing them a disservice. Adapting to a school environment for the first time at five or six years old for a child with Autism would be extremely difficult. I am still on the search for a school that will allow Ellie to do pre-K instead of kindergarten in the fall, but as of now we are still headed for kindergarten because there are no other options. Ellie is nowhere ready for kindergarten academically or behaviorally but is being forced into kindergarten because of her age and because of her diagnosis. It boils down to one thing: Our community and most others around the country need to do better. They need to do better at accommodating everyone and not just those that fit in their little box.

 

2 Responses to “Labels”

  1. Could not agree more about the school! I think and am hoping preschools will have to step up to the plate soon with inclusion becoming the norm in schools. I’m relieved with you about the diagnosis, and will be glad (and praying!) to see this make more help available to her. And, you are wonderful, Brooke. One of very few “Supermom”s I know! ❤️

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