I have come to grips with having a child with special needs.  I have mourned the loss of the idea of what my son’s childhood would look like, and accepted it for what it is….uncertain, and unpredictable. I suppose this is true for all kids, but in our case, the variances and uncertainties are exponentially greater, and much more visible and immediate.  One thing I cannot come to grips with, however, is how complicated and convoluted the  educational system becomes when you add the “special needs” label to your child, and the amount of time that I foresee devoting to this part of his life from now going forward.

I recall attending a Wright’s Law conference the spring before my son was embarking upon starting pre-school.  For those who do not know what this is, it has to do with special education laws.  We had only had positive interactions with the school personnel at that point (and for that matter, still!)  and I loved all of  his therapists and teacher (and still do!)  It all seemed so simple and I was feeling pretty good about him beginning school with this great team behind him.  Having no idea what this conference was really all about, it was suggested to me by another parent that I attend.

At the time, I thought it would just be an informative session about schooling options for special needs kids, and also a day away from the responsibilities of changing diapers, feeding meals, and cleaning up messes. I could not have been more wrong.  After eight hours of being seated in a room with a few hundred parents, teachers, school administrators (who by the way, the administrators were the brave ones for attending, I later learned….) I walked out feeling completely overwhelmed and numb.  My eyes had been opened to a prospect that I didn’t know existed, nor did I want think about…..that my son’s education was not a given, and that I was going to have to fight my ass off for him.  Until that moment, I knew only that there were special education classrooms, and there were general education classrooms.  I also thought that in a special ed classroom, my child (along with all of the others who were in there) would just automatically be given what they needed in terms of instruction and support. What that was, however, I had no idea.  This is not my area of expertise, of course. And at that point, I was thinking that perhaps Nicholas would be in the general education classroom by the time he reached kindergarten anyway! At this point, we did not have an accurate diagnosis for him, and so I held hope that maybe a switch would just flip, and this would all just go away.

The speaker (a lawyer from a different state) spoke very technically about  special education law in the state of MI, and my need to know it, understand it, and use it to my benefit.  The parents in the room with me, very clearly jaded from years of their battles with their respective schools, asked pointed and heated questions.  The discussions during this conference were filled with acronyms… I.E.P, FAPE, MET, IDEA…..I could go on and on.  I knew what NONE of them stood for at that time, and just trying to keep up with this new language during the conference was exhausting for me.

I distinctly remember calling my husband during a break, nearly in tears.  I could not believe what I was hearing!  It’s not that the school is our enemy, the lawyer kept reiterating,  but unfortunately, like everything else, money plays a huge factor in how decisions are made for these children. I was learning that often times, it was at the expense of the child who needed some extra support beyond that of a typical student. Not only that, but there is a very specific and complex way about which to request additional help and services for your child, and you MUST know this process and your rights inside-out as a special needs parent.   I kept thinking to myself that maybe none of this would ever apply to us because we have such a great district, and great teachers, and, and, and……

Well, fast forward to last week.  IEP time. We still have a great teacher, and a great district, but now we also have more information. My son’s recent diagnosis of Autism was a game changer for me.  This meant to me that his school environment/placement needed to change drastically in order to meet his very specific needs, and more importantly, for him to gain anything from being there. Kids with autism function differently, and in turn, learn differently. They require much one on one time with their educators and therapists, along with constant repetition and redirection. Skills that come naturally to most kids, like playing and interacting, must be taught to one with autism.  This, unfortunately, is just not possible in the classroom that he currently is in.  There are simply too many other kids with unique needs, and too few adults available to really reach Nicholas in that 2 1/2 hours per day.  I mean, let’s face it….I can’t even meet his needs all of the time at home with only two other children in the house.  And while he has made good progress over the year, I can only imagine that  it is a drought compared to what progress he could have been be making with much more direct interaction with his educators.

In many districts, there are classrooms specifically designed for ASD (Autism Spectrum Disorder) kiddos, which have a  limited number of students (6 or less,)  ASD-trained instructors, and many special sensory additions to the classrooms to help these kids neutralize their behaviors throughout the day as needed. And usually, these are all-day programs which, as a result,  provide much more intensive instruction for the kids.   Unfortunately for us, this type of classroom is not currently available at the pre-school level in our district. Upon learning this, I was very disappointed, and this is also when I realized that I was going to have to do some major homework, and perhaps that conference would come into play after all.

After spending a better part of two weeks researching the Michigan Special Education laws (known as IDEA), talking to advocates, advocacy groups run by the state, securing a facilitator for our meeting, reviewing at least three books on how to write IEP goals, actually writing these goals in preparation for the meeting, and pulling together medical reports from all of his therapists, gathering his new medical diagnosis reports,  and documenting every bit of information I could to find to support my case for his need for a more structured classroom environment, the meeting had finally arrived.

I will spare the details, and suffice to say, that after 3 1/2 hours of discussing every aspect of my son’s school existence, I walked away feeling exhausted, both physically and mentally.  We are not even yet  at the point in this very complex process for which I can even request a different classroom environment for him. That is coming up after yet another part of the process is completed….long story, and it will be this fall before we cross that bridge.  But the bottom line is that as a parent, I am just starting to feel the very significant amount of time that this will take to advocate for my son. And in doing this, this significant amount of time is taken away from my other children who deserve JUST as much of me as Nicholas does.  This is a very frustrating feeling for me, because I just simply wish it were easier.  Everything about Nicholas requires more time, more money, more attention, and he deserves every little bit of that.  But trying to find the balance with two other children in the picture seems almost impossible sometimes. I can only imagine it will get more difficult as time passes.  I always hear about the parents who are running from this baseball game, to that dance recital, to this science fair…..and for me, I will have those things thrown in with I.E.P meetings, and therapy appointments.   Maybe for us, this will actually even things out a little.  When my younger kids reach ages where they are involved in other activities, maybe that will actually make it seem less like it is all about Nicholas.  Who knows?  I have this same basic struggle with balance almost daily.  This is exactly why I feel that this journey is “uncharted territory,” because I don’t know anyone who has been in my exact situation, or even a similar one for that matter, who can tell me how it all worked out for them in the end.

As with every learning experience, I’m sure I will find a way to manage all of  this. But it is difficult to keep the “mommy-guilt” in check at times.   But for now, I can at least be proud to say that I basically  have earned an honorary degree in special education law!  As I’ve said before, Nicholas has a unique way of getting me to learn ALL kinds of new things! Only time will tell what is next, and which of my kids will be teaching me the lesson.

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