Thursday, July 1, 2010

How to Survive the Summer-Caregivers of Children with Special Needs

Ok, I just realized maybe I could’ve done this sooner in case some parents don’t have these things in place but if not hopefully it’ll help with future plans!  Here are some ways parents of special kids can get through summer:


Extended School Year

Children with special needs should have year-round reinforcement of what’s in their IEP (Individual Education Plan).  Many children are eligible for what is called “extended school year.”  What this means is during the summer they still attend school, usually for 6 weeks, and get the same related services such as speech, occupational, and physical therapy that they had during the school year.  Parents used to have to prove that their children “regressed” and lost skills but now it’s even easier to get ESY.  There’s a great write-up with more details on the Wrightslaw site at .  If you have any problems getting ESY for your child, contact your Parent Training and Information Center for free help found at


Camp-Including Special Kids

There are many types of camps:  some “typical”, some mixed, and some just for children with special needs.  I personally had a hard time because my daughter has both kidney disease and autism (so the medical places were concerned about her behavior and the autism camps were fearful of her health status).  So to help other parents, I wrote an article for Exceptional Parent on finding special camps which can be found at .  There’s an excellent national listing of special camps found at .  Note:  What works for us is having her go to camp the weeks before and after ESY and she still gets a week off.  Special note on vacations:  if you’re going someplace, prepare your child ahead of time with a story, how to travel, and bring things to keep him/her occupied during the trip!


Helping your child-Stay in a Routine

If your child doesn’t go to ESY or camp, what else can you do?  One thing I found out is to keep my daughter in a routine each day, otherwise she’s like a “lost lamb” and actually acts more “autistic”!  We keep her regular bedtime, wakeup, meals.  We also keep all her therapies going year-round.  Besides school therapies, my daughter has participated in special needs dance, Very Special Arts, therapeutic horseback riding, arts & crafts, Gymboree, music therapy, vocational/self advocacy training,  Special Olympics etc.  Next month I’ll get a list together of recreational activities.  Even if we stay home, I might write up a daily schedule that looks something like this:


Stephanie’s Schedule for Today

Saturday April 10

Get up & get ready for the day (get dressed & wash up)

Eat breakfast

Michael’s Kids Club 10-11


Howell Farm baby chicks & egg decorating 1-3      







Special Easter movie

Get ready for bed & go to sleep

You can put times or pictures next to each activity but you get the idea.  It’s ok to have downtime but helps if your child knows what to expect.  You might even want to do a basic schedule form and just write in activities each day.  Also, you can give your child choices (pick between 2 activities) or have them help plan the schedule.  My daughter actually asks what her schedule is and wants to know.  We also have a list of indoor and outdoor places to go and activities to do at home: like toys, music, exercise, books, crafts, computer, etc.  If all else fails, check out the “Mom I’m Bored Jar” at .  Hang in there and remember that enjoying activities like blowing bubbles, walks in the park, reading books, watching silly kids’ movies etc. with your child are the things that fun memories are made of for both of you!


Remain Hopeful,



  1. Good advice, except that all ESY programs in Los Angeles have been cut, and there are no camps that are affordable, at least for my child. I'm looking at three months with nothing planned. Sigh.

  2. Hi,
    I'm so sorry to hear that. They really can't use cost to deny kids ESY under the Individuals with Disabilities Education Act. I'm hoping you'll call your Parent Training & Information Center for free help, may be too late for this year but you can get it in the next IEP. Also, some camp funds are reimbursed through the Office on Disabiity or the Division of Developmental Disabilities and if you don't know where to find them contact your Governor's Council on Developmental Disabilities found at . I hope this is helpful.