Summer is Here…Managing These Lazy, Crazy Days!

When I was a kid and the last school assembly was over, the jubilant school bell sounded and my friends and I dashed from the building as if our pants were on fire! Years later when my children entered school and I prepared the final brown bag lunches for that last time I sang as I spread peanut butter on sandwich bread, “No more pencils, no more books, no more teachers’ dirty looks,” hoping to evoke smiles (but actually it was more like, “Mom you are so embarrassing!”). In my personal history, the end of the school year was always heralded with excitement, fun and a sense of freedom from the routines that endlessly fill the days and nights of school age children.

As a parent of school age children, there were other thoughts too like, “how am I going to keep everyone busy, happy and endure the continuous chant of ‘there’s nothing to do around here?'” Ah, summer and parenthood!

For those of you living with Autism and parents of children and adults on the spectrum, summer has its own set of challenges that include the above mentioned ,and then some. Structure is like a big, fluffy beach towel to most people on the spectrum in the summer and this is in sharp contrast to the lazy, hazy days many of us envision. In my experience, it is often up to parents and for some adults, their support team, to devise a structured day for the person living with Autism. It is my experience that although this may sound onerous and yet another “job” to do, it is truly worthwhile and will lead to a much more pleasant summer for everyone.

Here are are some tips to think about as you remove the cover from the barbecue, plant garden flowers or wring your hands together in utter fear and frustration as summer begins:
1) Talk to the person living with Autism and find out what they would like to do this summer…if they are not too verbal than observe what they seem to enjoy and like. All summer plans should be person-centered and derive from the interests of the individual involved;

2) Make a list of all favored activities;

3) Make a list of household chores and responsibilities the individual can do independently and add these to your list;

4) Make a list of household/life skills that the individual can add to their repertoire (not too many items) that family members and support helpers can help him or her master and add these to the list;

5) Ask the individual if they would like to take a trip this summer and perhaps the entire family can join in or if this is not doable then maybe suggest a few ideas for day trips and add these to the list;

6) Think of a few weekly community based outings that a family member or support helper can go with the individual to do such as grocery shopping, errand running like bank and post office and add these to the list;

7) Plan unstructured time…like time for the person to listen to music in their room or work of the computer or whatever they enjoy and add that to the list;

8) Plan outdoor time that could be learning to swim, taking walks or hiking…whatever the person likes or if they are willing to be exposed to something new, that is even better;

9) Plan for one night a week to be something special (a reward for all) like going out for frozen yogurt or a barbecue and add that to the list;

10) Invite school or work friends over on the weekend or from time to time so the individual can socialize with their friends and add this to the list….

As you see the list can include a whole array of items and it should! Then print out a calendar or use one you have and each day create the plan. It would be great to have Mondays have certain activities that happen every Monday etc. so as to have a predictable and manageable for the person structure, but do the best you can as this is not always possible.

If you are an adult on the spectrum, I think it is great if you can do this for yourself…it will really get you going rather than waiting for random things to happen. It will also help you to organize your summer and to have plans to look forward to with friends and family.

Summer is filled for most of us with some lazy, some crazy, some boring and some forever memorable days and with some thought and a little planning, this summer can be your best one ever! I hope it is!

Parents of Adults on Spectrum: They Need Support Too!

The world of adult Autism does not only involve individuals who are personally affected by the challenges of Autism.  Autism affects family members throughout their lifespans as well, and in particular parents who have a child on the spectrum; and that means “adult” children too.  A decade ago, The Daniel Jordan Fiddle Foundation was the first organization in the United States to focus exclusively on adults living with Autism and we paved the way for programs, public policy and initiatives that benefit adults on the spectrum. Today, other organizations are now beginning to look at the lifespan of Autism, and the public at large is beginning to realize that Autism is not just a childhood condition.

As the DJF Foundation has always been looking at and directing our efforts to best serving adults who live with the challenges of Autism, we also always have been focused on the health and wellness of the family members who care for and support adult individuals. (See the Health and Wellness section on our website at )

The diversity of the spectrum is reflected in the amount of time, support and care required of the family members of adults on the spectrum.  Some adults can live independently with occasional support of family members, but most adult individuals on the spectrum require significant help from their parents and caregivers as they navigate life in the community.  Many, because of a paucity of residential programs coupled with long-waiting lists for the limited accommodations and financial constraints, live at home with their parents.

So what happens to the parents of adults on the spectrum?  Who thinks about their needs?  Who is supporting them?  Parents of adult children generally have the luxury of retirement, vacationing, down-sizing, starting new lives, transitioning their lives…but parents of adult children on the spectrum, generally cannot do these things. There is really no end in sight in the day-to-day management of the life of an adult child on the spectrum.

We, as a society, need to make ourselves aware that parenting an adult child who lives with Autism is not easy.  We need to listen to parents of adult children on the spectrum and find out what their needs are and how we can support them.  The Daniel Jordan Fiddle Foundation will be leading this discussion in the days and years ahead.

In the meantime, you can help too.  If you know a parent of a young adult or adult on the spectrum, perhaps you can offer some help to them.  If you are a member of a faith community, perhaps your congregation could be supportive by providing meals, rides or whatever your caring community is capable of offering.  In our grassroots communities, we should offer opportunities for parents of adult children to socialize, perhaps at local community centers or YMCAs or JCCs.  Truly, there are many avenues to offer support, and they do not have to be fancy or big efforts—every kindness will make a parent of an adult feel less alone and more valued!