Parents of special needs children have a lot on their plate. Every day is filled with choosing what tasks are priority and what tasks can wait until tomorrow. Then there is the turmoil of what if the right choice isn’t being made and in fulfilling that choice, are we doing enough to complete what is necessary for our child to function successfully?
Then there are the “nos” we must present to others along with ourselves; so much that one must sacrifice to meet the daily demands of the special needs world. Then there are the daily demands we must present through the correct channels to ensure our special needs loved one is given every opportunity possible. Daily living and advocacy are a juggling act for any parent. The “not knowing where to start” thoughts can immobilize one to the point of not evening bothering to start. It is a subconscious detriment of an “all or nothing” attitude. Sometimes, if we just remember to start with small steps, just showing up will start the ball rolling faster then we imagined.
Call me an overthinker, but the above is more common than one might realize. I decided on the second Tuesday of January to stop thinking and just “do.” As a parent who is part of the Mt Diablo School District and being only a five-minute drive from the district office, I had no excuse for not attending the monthly meetings sooner. I am a typical human being who habitually goes through the motions to climb the problem mountains (don’t I already have a pile of stuff to do?) instead of flowing in the solution with ease. This time, the solution was to attend a meeting of educators and parents working together. It is, appropriately titled, Community Advisory Committee (CAC) and I realized how my “why bother going” was only a distorted perception that it was going to be a meeting filled with legal jargon that would have me yawning. Far from it.
The meeting on January 8th was an educational experience that included a presentation called “Be Your Own Advocate” that educated the parents attending about the benefits of IEP (Individualized Education Programs) meetings. The CAC meeting gave me a better understanding on how to approach the IEP documents and discussions. The meeting also helped me realize that I am not the only special needs parent filled with emotions of being overwhelmed with information, let alone the emotions that come with having to read the details of all the challenges children like mine must overcome.
I was filled with gratitude as I listened to the reviews of representatives from the Board of Education, Budget Advisory, and Parent Advisory, to name a few. I felt a sense of relief to hear about all the actions in process for the special education area and the amount of resources available to special needs families as we were given information about educational and supportive workshops and events. The parents in attendance were given the opportunity to share concerns and comments.
After the meeting, it was reassuring to be warmly approached by the MDUSD educators and employees. The meeting was particularly beneficial in that it opened the door to my involvement in school policies that affect my child.
If you are a special needs parent and have not yet taken the first step in a legislative direction because you don’t know where to begin, begin locally. Start small. Attend one meeting within your school district to see what it is that keeps the engine running and maybe you will find out that you can add solutions for the parts that seem to slow it down. In the meantime, you will connect with others who are dealing with similar situations and learn the value of a “village.” Don’t just show up for your child but show up for yourself. Connecting to a support system is much easier than you think.
For more information about CAC, visit http://www.mdusd.org or contact your local school district to inquire about informational resources for your area.
Stefanie Boggs-Johnson is the mother of a pediatric stroke survivor and is the Northern California Facilitator for inClusion ClubHouse. She is also the published author of “I See You, Little Naomi” and “I See You, Little Andrew,” educational children’s books that promote special needs awareness and compassion. For more information, please visit inClusionClubHouse.org or her Facebook page @ItTakesASpecialVillage.