IEP...why is it so hard?

As most of you know, we had Brycen's IEP yesterday afternoon. This sets the stage for next year's goals, speech therapy, and accomodations that are needed for Brycen to attend school. I'm not going to detail the entire IEP here (I actually don't have a final copy anyway as the copy I was given was a draft and didn't even have all the pages printed in it) as this is a very emotional time for me, and I would assume Mike as well but I am not going to speak for him here. I know I have said before that preparing for an IEP and then the actual IEP meeting is the start of another cycle of grief according to most parents of children with disabilities. Every time I see in writing just how far behind Brycen is or the fact that he needs far more accomodations than the typical child in order to thrive in school and just make it through the day, it is very, very overwhelming. I can talk and blog about it, but honestly until you are in the parent's position sitting across the table from a bunch of school representatives that are planning out the entire next year for your child, it is just not possible for another person to understand the unbelieveable emotion that is attached to this one part of our entire life. AND to think we have to do this over and over and over for the next 15 or so years of his life...words cannot express how that makes me feel!

To summarize his meeting and goals for the next year, he will be working on word recognization, using pictures/sign language/verbal to respond to questions asked of him, making choices, and social skills. His speech therapy at school was slightly increased to 100 minutes per month (actually only 80 of work with him, as the other 20 is used for teacher/therapist consultation and communication). He will not receive any occupational therapy at this time, but we will be seeking out a new evaluation of this as we have observed increased sensory issues, as well as he is falling behind in gross motor skills so a physical therapy evaluation may also be completed per our request. He will be placed in a 4 yr old room that will consist of both typically developing children and other children with special needs. He may be introduced to a basic communication device that will help him with making choices and answering questions using basic pictures that attach to the device and verbalize what the picture is. The consensus is that though he may have developed 20+ spoken words over the school year, those words are only spontaneous on occasion and are mostly prompted words. "He does not have functional communication skills, does not have an effective and appropriate way of expressing his wants/needs/disagreements, and he does not possess the skills needed to engage socially with peers."

While most of our concerns were addressed and included in some form of the IEP, I have concluded that as parents, we may never be happy with what the school can give him. I feel he needs more individualized speech therapy to set the stage and give us direction on what to do at home with him. At this time, we will still be utilizing speech clinics outside of school to give him the most opportunities available to work on his communication skills, more often on school breaks and in the summer, and a little less when school is in session.

As a mother, I want the world for my children! As a parent of typical children, we give up so much happily to parent those children and include them in things they enjoy. We don't go on as many vacations, we don't see friends as often as before, our financial means are more strapped than before, etc...but as a parent of a child with a disability, what we give up is even more than what we ever imagined! Though it seems like a burden at times and a disappointment when we can't do or afford the things that other families can, this is our life and we do the best we can! I don't want people to think I just said that my child is a burden, because that is not what I meant. I mean all the things we have to attend, organize, prepare for due to his disability is a burden...loving our child that needs us far more than we ever imagined is a blessing!