Let me just stop at this point to leave a little message for those of you who might be new to the IEP world. If you have a child with an IEP, please, please, PLEASE, make sure that you not only know what it says, but understand it. Don't be afraid to ask someone for help if you need to. I know I have had to. Know exactly what each piece will look like in his day. I usually say something like, "I understand that my son's IEP gives him sensory breaks throughout his day. Can you tell me what this will look like this year?" I focus on this, because my son is a completely different student if he has these breaks. I'm gaining understanding. I then, can give helpful hints. For instance, they might think that my son doesn't need a break after lunch, because lunch is a break, but that he needs it right before math. I can then explain that they will get the best work out of my son if they will give him a break directly after he has been in any activity that has a large crowd, or is excessively noisy. The break seems needed between story time & math, because he is still overstimulated from lunch. Don't be afraid to give input. When you set your year up to be part of a team that is working hard for your child - everyone wins! I haven't met the teacher that didn't appreciate the help, and end up keeping open communication lines as things change over the course of the school year. Many books and special needs parents will tell you to be your child's advocate, and I agree. I would caution you that because of some of their past experiences, they will give you the idea that you must begin on the defense. I would personally stress the importance of building a good team for your child. I think you will find the need to defend your child greatly diminishes when you work well with those educating him. Having said all of that, I would also recommend that you know your child's rights. If ever he is not receiving what he should, you should be aware of what your school board, and state have to say about it. So, that's that.
They had just completed DIBELS (Dynamic Indicators of Basic Early Literacy Skills) testing before I came. I kind of get this sick to my stomach feeling every time the school wants to tell me about his test scores.
It's not that I'm not used to hearing that my son is not up to grade level. It's just that it brings up so many questions in my mind. What else can I do to help him? How is he ever going to make it through Middle School & High School if he can't read on grade level? Will he really earn a diploma? What is his future going to look like? My list of questions can sometimes seem unending. I have to remind myself that I trust God. I trust Him even though I can't understand why any child is born on the spectrum of a disorder that can't be defined. Because, He is still good, and He is still faithful. He's been there every step of this process, and I cannot imagine what it would be like to try to walk this path without Him. The same God that was with me on my knees holding my toddler who was completely melting down trying to beat his head on the floor because he could not speak or look me in my eye is still with me now. He has brought our son so far and taught me so much during the process.
They proceed to tell me that my son has tested just under grade level for reading. I'm immediately overwhelmed and praising God, but it doesn't stop there. They continue to tell me that they found that when they read to him, his comprehension level is a that of a child in a grade above him. I couldn't hold it in any more. With tears streaming down my face, I placed both of my hands on the table, and asked to share with them why this good news was so overwhelming.
Before I go any further, let me just say that I don't know what the diagnosis process is like for most families. For us, it was devastatingly difficult. We were never given answers. We left Kennedy Krieger Institute knowing that he fell on the autism spectrum, but that they had no idea what that would mean for him as he grew. They prepared us for the reality that he could regress. The way they explained it to us at the time, was that he could go to bed potty trained, and wake up and have completely lost the skill. He could go to bed saying "goodnight', and wake up one day and never speak again. What do you do with that? I'd like to tell you that I had the perfect reaction, but it's just not true.
For a long time, I was angry. I allowed bitterness to grip my heart. I questioned God not only daily, but minute by minute. I lived in fear of what could be. I could hear the Holy Spirit speaking to me in the days and weeks that followed so clearly. "You say you believe, but will you trust? You say you love, but will you follow? If your son forgets everything, and never matures into a self sufficient adult, will you still say that I'm good? Those were hard questions for me at the time. I'd like to say that I could honestly answer all of them correctly, but I couldn't. Not in the secret places of my heart. Thankfully, our Heavenly Father continued to draw me to Him in those times. He has proven to me over and over again that He is good. How could I not trust Him? The moment I decided to place my trust in Jesus not only as my Savior, but as my God who would walk with me through these times, I found peace.
Since those days, so much has changed. Our son never regressed. He exceeds expectations in many ways. We still have many things to work on - social skills is at the top of that list. Through testing and time we have been able to learn so much about our boy.
He is not defined by the word autism. He is defined by what God says about him. He is loved and cherished. He was thought of by a loving God long before I ever heard his little heartbeat. That is what I shared with his teachers. This moment, was a God moment. This was God reminding me that He is in control. That all the testing in the world cannot define our son. He will be what God says He will be. Then I shared with them that I realize that God uses people. He has used some brilliant doctors, therapists, church leaders, volunteers, and teachers to work with our son to bring about great progress. I am so thankful for these people. They have each played a roll in his success. Then I promised to pray for them as God uses them in our son's life this year. I promised to work with them and support them, and not against them. It was a wonderful meeting.
If I had to be honest, I would have to say that I absolutely hate autism. I hate that you can't see what's wrong when you look at his little face. I know how horrible that sounds. I know that there are families dealing with things so much worse than this. They would give anything to only deal with this, but this is where my heart is right now. There are still moments where I grieve what "could have been." I get distracted, and quite honestly, deeply hurt by people's lack of understanding, lack of compassion, judgmental glances and comments as I try to parent our son. See with autism, looks can be deceiving, but judgments are often made after a glance. I still battle with it.
Like so many other things in my life, it all boils down to this: Do I trust God? Will I leave my son in His hands? Will I allow His voice to to drown out all others? Will I follow Him even in this?
I make so many mistakes, and there is so much about this life that I don't understand, but I am purposing in my heart to follow Him. To seek Him always - even when it's hard. To truly trust. How about you?
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