There is so much I want to say and so much I could say, but right now I am just at a loss of how to say it. The last few weeks have been very stressful...I think even I didn't realize how much stress I was under until I looked in the mirror this weekend....my face is broken out like I am back in high school, my hair is literally thinning and looks awful and I look like I have a newborn because I am so sleep deprived. I wish I could say I was being dramatic, but I am not one to be a dramatic about this kind of stuff.
We had the second ARD to get Zach's school situation straightened out early this month. A huge stress. The incident with substitute occurred right before the Christmas break and weighed on me for the whole break and the month after while we waited for the ARD. Reality it is that it wasn't the sub issue that bothered me. It was the fact that Brandon and I signed an ARD that wasn't right...not for Zach, not for us and not what we we all deserved from the school. It wasn't specific to him, his needs and didn't have a safety net in place for moments like the sub. I felt the feeling i know oh too well...GUILT. I mine as well change my name to it at this point. It seems no matter what choices I make I live with that one feeling the most. When it comes to Zach it is the same as breathing some days. I don't mean that as a negative either. I just always feel like I haven't done enough, done it right or made the best choice and he deserves all of that. You can tack on the guilt I feel about about putting him before Erin 9 times out of 10, the lack of time and devotion I put into my husband and marriage, my parents and sister and forget about friends. I don't have time to put forth for a real friendship with a girlfriend right now. So yes, guilt is a big thing around here for me.
It manifests itself into all sorts of things too...stress, bad mood, fatigue, you name it. I don't need it pointed it, I live it.
If I am sounding a bit defensive or bitter on here today, than I guess you see my mood. I am. For the past few weeks we worked so hard to get his ARD (IEP) reversed. Many mistakes were made and we worked to get them changed...his diagnosis for one, the goals, the intricate details of thing...it is a lot more than meets the eye and ironically, the school doesn't do most of it, Brandon and I do. On top of that Zach has speech and OT, is in a social group, has swimming lessons, and ABA therapy. Oh and i have another child, her name is Erin and she is 2. In the mix of all that we have dealt with medical appointments...back to the ENT two times to discuss tubes...choosing not to right now because we think he will get better on his own and the option to avoid one more thing is what I want. Back to the developmental pediatrician to discuss medication. Oh the big one that has guilt all over it. And the one that I have spent more time reading, researching, discussing, and yes, praying.
We have been told for well over a year that Zachary was displaying ADD type behavior. Kids on the spectrum can often get a dual diagnosis. Sometimes the symptoms that look like ADD are actually issues based on their sensory processing disorders. You ask a therapist you often are told it is SPD a teacher or doctor will say ADD. There is no one fit solution or answer. He is in therapy. His therapist even suggested medication. It wasn't just the school and it wasn't in fact his doctor. Let me be clear on that. His doctor in fact held us off for months. He feared Zach wasn't too young, but too small. He gave us the side effects, the speech on what we could lose and what we could gain. He wasn't pushing anything on us. Nor was the school...they simply pointed out his issues...we see them too. He is impulsive, fidgety, and distracted easily. Not only does it affect him, but his classmates and teacher that has to redirect him over 12 times within one hour.
We have worked diligently for 2.5 years on therapy, in home and at therapists. He has been in a special ed school setting, private preschool, regular public school...we have tried what we have had available. The one and only thing we didn't try was the GFCF diet. Why? For lots of reasons that range from medical advice to selfishness. Every doctor we asked about this too said no. Zach is already tiny, 39 lbs and almost 6. He doesn't eat well as it is and this diet is VERY limiting. He wouldn't be able to eat a school (lunch line), parties or most things at restaurants. This would make him feel more and more left out as he got bigger. The diet has NEVER been proven to work on its own. All "studies" done have never had a sample population do only the diet and nothing else, like therapy. So no proof that the diet alone can change things. It is expensive. It is not easy to get the foods at most stores, it takes way more time to plan meals and limits a lot of things. Oh and it would have to be a family change or for just Zach...how do you decide that? His diagnosis came when I had a newborn and we lived in the Mojave desert, I did what I could with what I had and I continue with that philosophy.
With that being said...I am not the brightest light bulb in the package in a lot of areas, but I am not stupid and I am not thoughtless with my child. I took classes in college about child development (my minor was family studies). I worked with kids before I had my own. I actually took a seminar in Abilene about ADD/ADHD and have the certificate to prove it. I have researched, read and learned a lot about this topic. I didn't go into this blindly. We, Brandon and I myself, felt we owed it to Zachary. Not his teachers, not us, to him, to try. If medication helped him feel better, made it easier for him to concentrate and learn. To aid him in any way, we wanted to try. We also said, as I stated on here in a few posts ago, that at any time we saw any negative side affects the medication was done. I see no way that that is being reckless and I again thought it was best to try. I spent the entire night before I gave him his first dose up...I cried myself to sleep only to wake up in the night having nightmares. I then went to his room and watched him sleep. I was a mess the next day waiting by the phone to hear if the school had any news. I have had little to no feedback from them about Zachary. The only thing I heard yesterday is that he appeared to be more emotional. I have noticed that too, but he also on his own can be a sensitive child with fits of tears over things that make no sense. We have built up the medication from a minimal amount the first week of a half dose, half day. We have taken days off. It is a trial, it isn't one size fits all.
I write all this after a simple event made me frustrated, hurt and just feeling again, guilt.
I posted on Facebook last night a simple question, if anyone had any information on Ritalin and its side affects. I was aiming more for the people that had taken it or had kids take it. Hoping to get some real ideas of what they saw, didn't see, etc. What I got surprised me and honestly hurt. I know people have opinions and I know myself, I have them too. I know often I have said things that came out harsh on FB and later realized I could have worded that better, sent a personal note, something else maybe. But I had over 10 messages all very negative about the use of Ritalin for Zach. When in fact I never said who it was for, or put in details. As I appreciate the opinions from my true friends, some people on there aren't my real friends (simply friends because I know them)...I felt some of the comments crossed the line of being thoughtful to my feelings. And it hurt. Medicating your child is not an easy choice. Period. No matter if it is antibiotics or antidepressants.
I was happy that my friend April wrote me several private notes and then posted one great one on my FB page followed by my sister...reminding me and my friends that this isn't easy, isn't taken into lightly and I am trying my best. I know it isn't easy to imagine being in someone else's shoes, but that is what this is about. I have a child with Autism. I have a life that literally revolves around that one fact most of the time. I have to make the choices based on that one fact for my child, for myself, for my other child and my husband. I don't expect anyone to understand who doesn't walk in my shoes. I wouldn't wish some of my guilt and pain on anyone. But I also don't expect the judgment that I sometimes get. I wouldn't trade my son in for the world. He and Erin are my life and are both equally amazing children. While I often spend more time stressed and guilt ridden over Zachary, it isn't because he is difficult, but because he is so deeply loved and admired and we want only the very best for him.
So...there is more than meets the eye to my choices, my state of mind and my life. If you want to know more, simply ask. I am often an open book...sometimes too much. But like I wouldn't change Zach, I won't start to change myself.
