Although we make it a point in our family to not let autism define us as people, there are some days when it feels like we eat, drink, breathe and live autism related activities and there isn't much room for focusing on anything else.
Please don't misinterpret because I'm not complaining. In actuality, being able to work on helping to empower those on the spectrum to achieve greater success, better life skills and personal satisfaction is something I'm very interested in. John and I have been talking at great length recently on how to achieve this while meeting our family's personal needs as well. We have some ideas... and when we're ready, we'll share here. Until then, let me share a little about our day today and then I'm going to try and head to bed early because I'm exhausted!
After getting through some business stuff in the morning, we left our home at noon to take care of some personal medical issues at Kaiser and run a couple errands. I find waiting in pharmacies and medical waiting rooms often more tiring than if I had gone out and taken part in some hardcore exercise. Not a favorite place for me to wait with the lights and the smells and the people not feeling so well... but it was necessary so we took care of what we needed to and left.
The big event of the day was our youngest son's IEP meeting and transition plan. He will graduate this June from a special education preschool and move on at the end of August to a general education elementary school where most of his day will be spent in a mainstream Kindergarten classroom with special pull-outs as needed for speech, social / communication skills and physical therapy. He has qualified for SCIP which is the school's Social Communication Integration Program. This program focuses on teaching social and communication skills needed to be successful in the academic environment and social environment. It also provides a place to go if a kiddo needs a sensory break, has a meltdown or could use a good social story to help with a challenging situation.
The IEP meeting went from about 2:55 p.m. until about 4:15 p.m. We went over some evaluation results and reviewed the draft of his IEP before a final copy was printed. All the people there were caring, accommodating and had our son's best interest in mind. It felt personal. (Not all IEP meetings we've been at for our oldest son who is now in middle school have felt this way but all the ones for Ryan so far have been great.)
We then went home, checked email, freshened up and all went back to ECC for a 5:30 p.m. - 7:15 p.m. Autism Support Group meeting. The kids were great sports about being in childcare and the school was so nice to provide this as many support group meetings do not always have that option.
The main topic for the evening was Thinking About Safety, something near and dear to our hearts and I would imagine all parents. We got some great information that I will share in an upcoming blog and also had the chance to interact with other parents and educators there about potential programs to help our children during summertime when they don't have a daily school structure and their routine is turned upside down again.
We and many other parents often face challenges during Spring Break and Winter Break so adding in an entire summer and worrying about things like regression, keeping the children safe, entertained and on some sort of schedule can be a daunting proposition, especially when you have kids who may have just finished a year or two of preschool but aren't old enough yet for summer day camp. Ryan was in a program last year that he LOVED called Camp Kiddo that fit his age group and supported his special needs but this year, that particular program isn't being offered so we're in the process of looking for something else that is beneficial and affordable.
Some of the programs out there look WONDERFUL but are way off the charts in terms of expense. It's one of those situations that families of children with autism and other special needs often find themselves in. How can I best meet the needs of my child and give him/her opportunities that are educational, fun, safe and rewarding but still meet my budget?
After the meeting, we stopped to pick up a quick bite at McDonalds for the boys since they had been so good during childcare time and quite frankly, I know John didn't feel like cooking dinner nor did he want to tempt fate with my cooking.
While I was waiting in the car with the boys while John went inside to get our food, Justin shared about some challenges and a concerning situation that had recently come up in one of his classes. I won't go into the details but I thought it was very proactive of him to come to us because now we can address his concerns with the appropriate parties involved in a timely fashion. I am so proud of my son for sharing with us. Self-advocacy is something we try and teach but it isn't always easy to gauge results. Seeing it in action unsolicited is a beautiful thing as it is such an important life skill.
As I type this blog, John is working on a draft of an email to the school and then I will be assisting in the final revisions. Hmm... I had good intentions of going to bed early but this is way more important. Justin advocated for himself and now we're going to help advocate for him.
I would say overall that the day and evening was a success and we feel good about the information we received and the rate of progress being made. Now that we've had his IEP meeting, tomorrow we are probably going to take Ryan over to the elementary school and start the registration process for Kindergarten. WOW... He's really excited about it and so are we, although we will definitely miss the amazing teachers at staff at ECC.
Well, that's it for tonight!
Another blog again tomorrow....
Come As You Are... Let Your Light Shine!