IEP, IFSP, ESCSE, CDRC... Acronyms = Frustration!

Today I'm trying REALLY hard to find the beautiful. Like real hard, folks. I'm trying to censor myself and my frustration and to realize that it's likely that my frustration is not stemming from where I'm aiming it at, but at life in general and my lack of knowledge and ability to fix things immediately. Because, you know, I can obviously be in control of all situations at all times. Right. But truly, while raising any child you entrust them to school or daycare or church at some point in their lives and it is almost always a constant source of anxiety to me that my child cannot tell me how his day was, who his friends are, etc. Sometimes he comes home with paint on him so I know he's painted! Lack of communication at home where I can see him is hard, but it's doubly hard when he's away from me. What I am figuring out though, is how to advocate for Grayson and myself and to find my voice (and hopefully in a nice way).

In December, we filled out Grayson's IFSP for the year. In all honesty? I remember very little of that meeting. I ended up having surgery 2 days prior to it and Gray had his tonsils and adenoids out THAT DAY. As in, I hobbled around on my crutches 2 days post surgery from 5 am to 1 pm and then dropped Gray with his grandma and headed straight to this meeting. In hindsight, I should have rescheduled. However, we involved his other preschool, his early intervention pre school and many members of our church preschool room team. I am obviously a super hero and felt like I could handle the meeting. I couldn't and perhaps I would be feeling differently if we had rescheduled.

I'd never even heard the term IEP or IFSP until he started at ECSE last January for a speech delay, which has evolved to an autism diagnosis, so I'm frustrated at myself for not knowing my and our rights and what to ask for, or even how to ask for it. So we sat around the table and talked about his progress thus far, what our goals were for him, and agreed to a school autism eval on top of his medical diagnosis. I think. Brad tells me that's what we did, at least. We do have common goals that will be what we work on long term- speech, eye contact, social interaction, following directions. But aside from that, I'm asked what my goals are for him. That's such a loaded question. Do you mean for today? For the next 2 years? For him when he's 18? I didn't know what to say. I still don't know what to say. There's more to this than I could have ever imagined, more to his educational plans than I had ever expected and I feel so utterly, uneducated and uninformed. And here's the kicker, he's in preschool. We haven't even hit 1st grade and I'm floundering. I will likely spend the summer reading every piece of information I can get on IEP's, what I can ask for, what our rights are, etc. I feel like I don't have enough information to be able to advocate properly for him and no one is offering that up freely.

I'm going to attempt to present this as nicely as I can and be objective. In March, we had our meeting for his school autism eval. The paperwork they handed me and the information I received verbally felt negative. So, so, so negative. I know we will have trials and we will struggle, but to have to physically read all the things he cannot or will not do is heartbreaking. To recap, what I FELT like I was told was: he has made no progress. They handed me this list and when I tried to dispute things and give examples, again, I was told no he is not. I felt like I asked appropriate questions about how this eval was done and I thought I was told that it was based on observation in class that was done by his teachers. I was too shocked to be able to respond much because let me tell you, we see progress daily at home. That is my impression of this meeting. That is how I left feeling. That is how in March, when I felt like my life was spiraling down and I was so out of control I felt. How I felt for 2 more months. I took the list to other people and said " do you see this?" They told me no. It still grates at me because I can't let things go. We got other people involved who were given a different answer on how that eval was done, and what it meant for him. In the end, that doesn't matter, but I FELT like I was misled.

Let's back up a little to where I said it's hard for me to not have communication about his day. I did make several phone calls asking about how things were coming along over the first few months. When the paper that gives me an idea of what he did (potty, snack, play, etc) stopped coming home or came home blank, I called a few times. Then I felt like naggy, crazy mom. I get it. My child is not the only one in the class, but dang it, I did call and ask. Multiple times. And then, I gave up. I let myself stew in my frustration and got more and more angry because I DID NOT KNOW WHAT ELSE TO DO.

In order to continue constructive dialogue, I'm going to skip over the next few months and the events that led to today's meeting. Mostly, it was positive. We got to air (most) of the frustrations and are scheduled to observe Gray in class Wednesday where I will present my list of things I didn't say today in hopes that I will have nothing left to chew on all summer long before I send my kiddo off on the bus in September. Here's the thing. The big thing. Being willing to advocate for your child quickly and having the knowledge to are 2 way different things. I was handed a stack of papers and told, "oh you probably get this in the newsletter but I printed it anyway". Nope. Not a one time. Why is that? Because I was not told about a newsletter I could sign up to receive in my email. Knowledge, folks, it helps.

 It feels like an agonizingly slow process as we learn what to ask for and how to ask for it. Do I think the team that works with Gray is great? Yes. Do I think they genuinely care about my kid and the other kids? Yes. Did they have some positive things to say today? Absolutely. Do I think they have the knowledge to help my child? Yep. Do I think maybe, uneducated, untrained me MIGHT know my child a little better than them? Absolutely.

 They were frustrated with us because, through the grapevine, they heard some of the frustrations I voiced to someone else that should never have made it back to them because A) that wasn't their right and B)that wasn't my intention. I needed to work it out in my head first. Ultimately I did and it forced me to have this talk, but it gave me much anxiety and it made everyone else tense as well. I could list the things that made me frustrated from today, but I think they were defensive so I'm going to do my best to let it go. I got to hear some great things that Gray is doing that give me so much hope but I'm still uncertain why we got told the things we did in March, which is very opposite to today's meeting. As much as I dread the loss of routine and structure for him and worry he may loose some footing over the summer, I'm ready to have a break from school for him and hope that I can go into next year feeling confident in our plan, that I can facilitate all of our schools and therapies working together for a common goal and that I will know more then about him and what he needs than I do today. We are learning something new every day and I think that's the beautiful out of this whole school mess I've had locked inside my head and heart since September!

Finding my voice

I'm working on the beautiful that this journey with ASD has to offer, because I know somewhere, there is beautiful. I know we will find gifts and pure joys amidst the trials and grief. I know we will celebrate every win with a zest we would not have known otherwise. And I know I will learn to let go of my preconceived notions of "normal" and let my baby thrive. But man, oh man, is it hard.

I'm hesitant to start this blog, to share the ugly, and the beauty I see every day. I'm tempted to hide, to work diligently for and with my son to achieve greatness, but never really say it out loud. There are bigger disabilities, illness, tragedies in this life. My son is healthy and whole, thank God. As I walk this road I see more and more the need for voices for autism. For champions. For mamas and daddy's who will give anything to have the world be accessible to their child, every child. I don't know how to sit quietly by and hope for better services and acceptance but I don't know where to start either. So I suppose this blog is where I will try to find my voice.

But this is more than just ASD, it's acceptance of our differences, visible or not. It's not awareness or tolerance, I'm not sure I'm even happy with acceptance. I keep thinking embrace, but that seems an odd phrasing. I'm not well educated in the technicalities of autism but you can read for yourself the staggering statistics, and increases in recent years, of autism. My personal opinion is that it's somewhat to do with more and more early detection of even mild ASD, but who knows. We need educated. Oh the stereotypes I thought of in conjunction to ASD and said "that's not my son!". There is one spectrum but no one autism, folks.

In the past months I have sought refuge in several blogs and found women who share the thoughts of my heart and mind but can voice it ever so eloquently. I lack that ability, but I'm going to try. My head is swimming with these thoughts but I'm not sure how to write them down. However, the best way to begin is simply to begin. So here it is.

Writing has always been therapeutic for me and I hope that just maybe my musings will help someone the way these ladies, Who have no idea who I am, have helped me. Helped me understand, come to terms, and even embrace this new life we have. Autism has not changed my son, but it sure has changed me, but only for the better. I'm tired of the grief, although I know I will still feel that in some ways for a long time. I'm ready to fight, to help educate, to facilitate acceptance.

I'm so blessed to have friends and family who have rallied around us in trying times but I'm ready to speak up and DO something. Even if that's just chronicling my thoughts and our victories. And hopefully, while writing this blog, it will remind me to always choose beautiful, because it's there even when I'm blind to it. Welcome.