Summer for a Child with Special Needs: So Glad it’s Almost Over

Photo by Tiffany

Published in ChicagoNow, August 22, 2016

Of the many challenges that families of children with significant special needs confront, summer may be one of the most difficult. Like mine, these families are now counting the days until school resumes and life becomes more predictable and productive for their kids.

Predictability is so important for the happiness of children with significant special needs, and yet it is the very thing summer does not provide. Check out my granddaughter’s schedule this past summer and you will see what I mean.

Weeks 1-3: Summer school
Week 4: No programming
Weeks 5-7: Special needs camp program
Week 8: No programming
Weeks 9-10: Recreation department camp for children with special needs
Weeks 11-12: No programming

For my granddaughter’s parents, who need to balance the demands of work with the need of their daughter for continuity, supervision, and specialized programming, getting through summer was like assembling a tough jigsaw puzzle. Of their three children, the one who needed the most in terms of consistency received the least.

Not having some form of year-round programming for kids like my granddaughter makes no sense. Aside from summer school, which is free and therefore constrained by our school district’s budget, the rest of the activities were fee based. Scholarship funding was available for families unable to afford the fees.

I understand the cost of this extra programming would have to be increased to cover the added personnel and facilities required to add weeks of summer activities. On the other hand, failure to provide year-round programming for children with significant special needs has a greater cost in the long run. Each week off, each new transition to a different setting, each change of personnel contributes to a loss of learning that is far worse for them than for their typically developing peers. For these children, the “summer slide” becomes an avalanche.

When she returns to school, I know from past experience that my granddaughter’s behavior will be challenging. She will have to relearn how to do school. And then there is the actual learning. The first few months will be spent re-teaching much of last year’s curriculum. What a tragic waste for children who have so much to learn.

I have a vision of an ideal summer program for my granddaughter and her peers. The school district and special recreation departments would need to collaborate. Summer school could seamlessly flow into a special needs/special recreation department camp, preferably in the same location and with most of the same staff. Parents could have the option of signing up for the fee-based portion (post summer school) with no skipped weeks except for families that choose to take vacations.

In my dream scenario, the school-year staff would share information with the summer staff, and vice versa. All staff working with a child would have access to that child’s IEP goals. Dare I dream further? Could a form of the summer recreational programming be available for all of those days off during the school year as well?

Supporting a child with significant special needs is challenging and costly. In addition to paying for therapies and coming up with inconsistent coverage for so many breaks in their child’s schedule, parents lose productivity and income taking countless days off work to accommodate the constant disruptions. But more importantly, the children who need the most support to be successful often receive the least.

Perhaps someone reading this knows of a source of grant funding to support my dream. Watching my granddaughter and her family struggle to get by this summer was painful. Life has created so many obstacles for this child. Having a schedule that was consistent and comprehensible to her would have gone a long way to ensuring her happiness and her ability to learn as much as possible.