As you well know, I get a little crazy with the way I pay attention to my kids. So much so that friends and family members are telling me “Doni all kids do that” on a frequent basis. If you are reading this, consider this a loving way of telling you that I am getting VERY sensitive to that statement. I could write a book on my reasons for this but foremost, many things that healthy functioning children do are perfectly normal in small doses but for children that have neurological disturbances, these often “normal kid things” are abnormal because of their root cause, their frequency, and their grade. Here is one example, if I were to tell you (which as a point of fact I have) that Ty hates eggs because he hates the texture of eggs in his mouth you would likely say “blah blah blah my so and so does that with blah blah blah…all kids do that“. True, most people have some level of sensory issues but with Ty, the frequency, the causes, the grades….all are different. It is not just texture issues, it is a combination of textures, lights and sounds, attention, mobility and balance, gross and fine motor…etc. – all these things are mild symptoms of larger issues – issues that are NOT WHAT ALL KIDS do.

The problem is when I am describing AN event, the event in and of itself SEEMS NORMAL. As the mommy though, I watch the patterns of behavior, the frequency and the grade. As a result, “I” stand a much better chance of knowing whether or not TY’S behavior is a normal kid thing or not. Does that make sense? I see the big picture on a 24/7 basis and my response is never an isolated incident – my response is dictated by many events, different issues, different grades, the pulling together of all the incidents. I feel like I am being patronized often for this level of awareness with Ty. I talked to Ty’s therapists about this recently and I point blank asked them “Am I the mother of a special needs child?”. The answer was “yes“. Because they hear way more of my “I wonder if’s” than the rest of you do, I asked both of them if they thought I tend to over play Ty’s issues, under play them, or if they think what I observe is right on target. They both told me that they think I have a very good grip on reality with Ty and that I do not “create” issues that are not real. In fact, they site more issues than I do so they would probably say I understate if anything. (Although, I will repeat….Ty really IS doing awesome).

Now having said this, do not think I am telling you that every time I see something “weird” with Ty that I think it is abnormal or “broken”. I don’t. But I DO question more things that would be normal behavior with another child because I HAVE TO. If his neurologist, pediatrician, opthamologist, occupational therapist, physical therapist, and vision teacher were all to tell me that Ty is fine – he doesn’t need any of this intervention and this is all in your head…well that would be a different matter. That is not the case though.

So what I am asking you is, please out of love for me, respect my insight into my son’s behavior. Acknowledge that I do see, hear, observe, and understand more than you do about Ty, root causes for issues, and his responses. I love to hear from you and sometimes I truly do overreact to things and it is a kind act for someone to give me some perspective – but please say it in a non patronizing way acknowledging that I may understand something you do not.

Here are two examples of saying the same thing:

What bothers me:
“Doni – all kids do that. You are worrying for nothing.”

What is kinder:
“My child doesn’t have the issues that Ty has but I notice that with my child too.”

See the difference? Even in the “kind” version, you may hear me on occasion say “Yes but….” Please don’t be offended. I am not trying to invalidate what you said but I also have the need at times to explain things to you on a larger scope because Ty’s reasons for his behavior and your children’s reason may not be at all similar (then again, sometimes it might be:).

Now…is it possible that some of the things that Ty does is PERFECTLY normal and I am questioning things that I don’t need to…..BOY HOWDY YES. I will be the first to acknowledge that. Understand though that a mother of a child with at least some level of special needs (thank the Lord Ty’s needs are so mild) needs to observe, calculate, and moderate ALL things that COULD be abnormal just to be able to rule them out. That is what we are obligated to do for our children because IF there is a root cause that we can work on, out of love for our child we need to be prepared for that.

Some people are afraid that this moderation is going to cause me to be over protective of Ty. On some scales that could be true – something I try to watch out for. To be honest though, I think Ty does VERY WELL. I am not trying to make BIGGER issues for him. I am just very aware of what his issues are and when I talk about them it makes other people THINK that I am over assessing him when in fact, I am just calling it like it is. I want Ty to succeed and I do not want to hold him back. I had a very bad experience with this lately that I will write about in a separate email. I am confident that Ty will meet every challenge with determined opposition. I am so proud of him. He fails forward…and then he gets it. My way of helping Ty is being honest about the problem and then accepting it for what it is and working on it. I am not a “bury my head in the sand ” kind of person. I am a realist. I do not bring these things up because I am afraid and I am trying to label my child. I am simple recognizing the problem so that we can work on it and later AVOID the labels. Ty is going to do fine. Better than fine. I am celebrating Ty and his future already. No worries.

I actually started this post related to petit mal seizures and the above was simply the “prologue”. I’ll save the seizure issue for the next post. I didn’t expect I was going to vent this but since I did…I think this posting should stand on its own. To all of you special mom’s that read this, feel free to copy this and send to your inner circle with a post script that says’s “I feel just like Doni” :). I know I am not alone in this one.