Monthly Archives: May 2018

It’s almost graduation time…now what?

My experience with my sons transitioning from graduating this August to entering the adult service world has been one filled so far with some mixed feelings. I think many of us on this journey can’t help but think of what we need to do to help our kids through this process verses someone without a child on the spectrum. I have come to the realization that my sons are blessings even in the more challenging times, though when you go through challenging phases, it can be hard to feel that. As our kids get older, it can get harder in different ways as there are things they may not get to experience. Examples of this may be driving, dating or heading off to college. At times like this, when they are heading to a milestone like graduating high school, I will think about potentially what they would be doing if they did not have their challenges of being on the spectrum. I think it is important to recognize and acknowledge these feelings, but also to realize that we are on this path for a reason and our kids contribute so much to our lives and other people’s lives in their own individual ways. People comment to me how much my sons smiles brighten any room they are in and how they both have such a great sense of humor and express that in so many different and unexpected ways. Several years ago, one of my sons kept changing the voice on his brother’s iPad to a female voice and would really laugh when his brother would use his iPad and try to change it back. In sibling rivalry fashion, I also recall his twin chasing him around the house with a ladybug sensory toy which his twin was terrified of so that he could get the preferred spot on the couch.

I have now visited all the proposed, potential day habs and have decided with my husband on the best option for our sons now. Similar to my experience through their younger school years, no perfect program exists really. I know we all dream of hitting the mega millions and creating more diversified programs to address everyone’s needs. I am hopeful that more and more programs and opportunities will be available to our kids to maximize their talents and abilities and realize that they are lifetime learners like we all are. It has always been a pet peeve of mine when parents are told that if a child doesn’t reach a milestone by a certain age, the likelihood is low that they will. I personally do not believe this at all. This attitude really limits our kids. I am amazed at how much my sons continue to learn and they have surprised me quite a bit at times with skills I had little awareness of.

The GAP program (GOTTSCHALL ACCESS PROGRAM) at BCC is an example of offering a different option to individuals on the autism spectrum. Of course, I am a little biased as it is a college based program of CAR. It gives individuals on the spectrum an opportunity to further explore and learn in a more specialized college -like setting. I hope our kids will continue to have more choices like this for learning enrichment programs they can participate in. I intend to explore this option in the future for my sons. At this time, I feel given this huge transition, I would see how they would do in the current adult service model. I have chosen to do Agency with Choice which offers more flexibility in options to individuals. I felt this was best for our family. I am planning on my sons attending the day hab several days a week and the other days providing them with a home based/community program. We are planning on using the same agency for both services to hopefully make this as seamless as possible. Of course, DDS funding has to occur for this happen. We hope to have that budget info soon.

True to my organized nature (I feel a necessary by-product of having twins on the spectrum), prior to visiting these programs, I created a checklist of what I felt was important in order for my sons to be successful. For them, I needed a program proficient in assistive tech, a bright and open space with no fluorescent lights, a small group dynamic that also had an established sensory program and practiced PBS (Positive Behavioral Supports). I also wanted a program that had them being active as much as possible, involved in the community through volunteering and have the ability for them to be in different rooms. While they share a brotherly bond, they also enjoy being apart sometimes wanting to be far away from their twin. For my piece of mind as well, I wanted a program that had windows on the doors to see into the rooms. I was surprised to see that some of these programs didn’t have this. I felt it was an added safety measure to at the very least, be able to see what was happening in the rooms. I also wanted a program that seemed open to my input as well.

Once we visited all the programs, my husband and I went through all the programs’ pros and cons and through a process of elimination we decided on one. I acknowledge that Massachusetts offers adult service programs and some states may not, I am grateful for that. Part of me was somewhat relieved once a program was chosen, but also felt like more options should be available to our kids. My next step is to meet with all the relevant people from their current school program, the adult day program and DDS to come up with a transition plan. As most of us, attest to once we have gone through this process or are going through the process like myself, it is filled with some hesitation, but also hopefulness for our children’s future. I was fortunate enough to have the ability to discuss and get valuable insight as several friends who have gone through this transition with their own children. It helped me realize this is just another step on our journey. Still, wish me luck! I wish anyone luck as well who is heading to a milestone with their child and going through a new experience as I feel being hopeful and having an action plan really does make a difference.