For the (Permanent) Record

When you have a child with special needs and/or an IEP (Individual Education Plan) life is full of what seems like endless appointments, therapy sessions,  forms and paperwork, observations, assessments, tests and meetings. And new  lingo!  (This I have not mastered yet but I am sure in time I will become quite fluent!) Once the “IEP/assessment ball is rolling” so to speak, the dominos fall and this is where the  cascade of  the above mentioned forms, testing, and the like, begins. It is at this point I feel I do need to insert here that the forms and evaluations and questionnaires that are sent home can be quite daunting and sometimes just plain ridiculous! Of course, being the type of personality I am, these prove to be a particular challenge to me as I want to always give the very best, most accurate answer I can on every. single. question. I  agonize over each word, each qualifying answer. This is for my son. What if I don’t answer something as accurately as I should and it puts him in the wrong category? What if my answers give the wrong impression that he is higher functioning than he really is and therefore, will not qualify for the help he truly needs? Or what if I answer too severely putting him in a slower category and then he will not be challenged to live up to his full potential? You see where I am going with this?!? It is a nerve-wracking process for me! (And in turn, for my husband as we try to fill these out together, each of us with our own opinions and experiences with our son~it can be frustrating to say the least!)

Because Henry had made so much progress last spring and over the summer, when school started again in August I asked his teacher if we could reassess his IEP. I also asked that his speech/language be re-evaluated because he had not qualified for help in this area previously but with age and time he still has not improved much in his communications skills.  So, back in October we had a meeting to review and discuss Henry’s current IEP and possible evaluation and reassessment to see if he would now qualify for  speech/language therapy and assessment of his relative intelligence (yep, that would be an IQ test).  I do not put too much stock in IQ tests but in trying to get Henry ready for mainstream kindergarten in the fall of this year, I felt this was a good time to have him tested.  I feel it is important for us to have an idea of where his cognitive abilities might lie. Next came the home/parent evaluation forms, more paperwork for us to document Henry’s history and more paperwork and forms for his angel-of-a-special ed. teacher. For Henry, more testing. A few portions of these tests are fun and like games to him. Others are just plain work. I do believe he is catching on and I am wondering what suspicions may go through that mind of his every time he gets pulled out of class.

So, that brings us to last week. (The intended crux of this post.)  We had a meeting to discuss the results from all of the above! Lots of stats thrown on the table, graphs, a  bell curve, discussions of behaviors seen and not seen, more lingo. No surprises. It seems we are all on the same page. What we are seeing at home, they are seeing similar at school. Similar enough anyway. To quote Temple Grandin, “Generally people on the autism spectrum tend be really, really good in one area and really bad in others”. Yep! That’s my little dude!  He is a visual thinker. He does see in pictures. Great builder! A hands-on kid. Not so great in the communication/language or social/emotional areas. Overall, we got some really great news regarding Henry’s potential and what we thought we knew about our son was validated.

So what the heck does all this mean?!? This is what I was thinking after the dizzying array of information that was put before us. Ultimately, Henry qualifies for more help in the area of language and pragmatics! Wonderful! Also, now that he is 5 years of age and heading to kindergarten in the fall, he is ready for his “school age” diagnosis. He does in fact, have Autism. Yes, we know this. We have had the medical diagnosis of PPD-NOS for over a year, along with ADHD.  It is because of those diagnoses we have been able to access special services for our son to help him grow and learn. But now, with this official school age diagnosis he will certainly have the continued support through his IEP’s for whatever help he may need throughout his school years! YES! Great news! I am smiling! I am relieved and happy!

And then I hear the Violent Femme’s Gordon Gano. His voice is saying in my head, “I hope you know this will go down on your permanent record.” Time stops. I am frozen with fear. Good God what have I done?!? Autism. My son has autism. By trying to make sure he gets all of the help and support he needs to succeed, I have succeeded in labeling him. I feel bile rising in my throat. I try to maintain my composure and I keep smiling. Somehow we finish up the meeting. There is chatter about what a good thing this is and how next we will set up an IEP date to include the speech/language pathology and revise Henry’s IEP for the rest of the school year and how we will have to have another IEP meeting just before summertime to discuss and make plans for transition to kindergarten. Great. No worries, I say. Sounds like a good plan. The pleasantries continue until we all go our separate ways.

For the rest of that day and well into this week I have felt as if I am moving in a haze. I can’ t seem to concentrate on anything. Thoughts and emotions tumble around in my head and in my heart. I know in my head that this school-aged diagnosis good thing to get him the support we know he will need and there certainly is no mistaking Henry’s challenges and differences in particular areas. As a family we have not been ones to shy away from talking about Henry’s diagnoses. We are not embarrassed or have any shame whatsoever. We embrace Henry for who he is, differences and challenges and all! But for a few seconds, my heart broke and I panicked. My son has autism. In those few seconds I wished it wasn’t true and I felt guilty about that! I realized in that moment that deep down in an almost buried corner of my heart, there was denial hiding there. Perhaps because Henry’s challenges and differences, though noticeable after spending some time with him, aren’t really all that prominent overall. We can “forget” the autism aspects of Henry. How could I wish my son to be anything other that what he IS? Henry is so very bright and funny and loving. He’s got a dimpled grin  and a twinkle in his eyes that will capture your heart! The kid is SMART! He is his own little dude and he has the potential to take the world by storm, doing whatever it may be that he wants to do! I have no doubts about this. Although there are certain aspects of the autism spectrum that make him the kind of person he is, it by no means defines him! But now it is on his permanent school record. Autism. Will future teachers see beyond that? Or will they just see Henry, the autistic kid? Will they take the time to get to know that Henry is so much more than that? Fear and panic overwhelm me. A long road lay ahead of us. How will we ever be able to make it through?

Then, through my tears, I envision my little dude for all that he is; his quirkiness and intelligence, his quick wit and amazing sense of humor, his vision and skill for building and “inventing” things.  He has an imagination like no other! He will use these strengths. He will be leading the way.  Love and pride and hope chase my anxiety away. Henry may have autism but autism does not have Henry. We will accept this label if it means helping Henry to be the best Henry he can possibly be.

I realize we are starting a new leg of our journey in the autism spectrum. True advocating for Henry must really begin. It is time we start to teach Henry to advocate for himself. He  has a long way to go and a lot to learn. We have a lot of work to do together, Henry and our family. Grant and I need to learn to also be educators for others, the teachers, administrators and even Henry’s peers and their parents. But the best teacher of all will be Henry, himself. He will teach the world that he is so much more than autism, no matter what might be written down on his permanent record.