Here are the steps that I imagine you might follow if you want to keep your typically developing child busy in the summer with recreational activities:
1) Find out what activities are available and ask your child which of these many opportunities they might like to participate in. Give them some parameters, because there will be a cost to be mindful of.
2) Figure out how many days or weeks you need/want for them to be occupied and register. Be sure to take note of the first day of registration and be on top of it to avoid disappointment.
3) Once registered (probably some time in April or May, or if you’re really pushing it, June), sit back and relax knowing that you’ve done your job, summer is organized, your child will be as busy as they need/want to be, and you will get the time to yourself (or at work) that you need or want.
4) When day one of the activity rolls around, drop your child off and maybe expect a bit of uncertainty or hesitancy. But chances are, they will see other kids they know, talk to them, start to feel comfortable, and even if it isn’t their favourite thing to do, they will manage their time there quite well. If they don’t like it, you could always look for an alternate activity next year.
Here are some steps you might have to follow, based on my experience, to keep your developmentally disabled child somewhat busy in the summer with recreational activities:
1) For your first couple of summer breaks from school, decide you will just ‘make it work’ by taking time off and using family or friends for childcare so that you don’t have to go through all the steps that might be required to have your child participate in summer recreation.
2) Realize after those first summers that a) you need more time in the summer without your child around to fuel yourself for all of the time that they are around and b) your child wants to be part of the recreational activities she sees all the other kids participating in.
3) Put a reminder in your phone for February the following year that says: ‘Start investigating summer activities’.
4) When February rolls around, start doing some research to investigate summer activities for children with developmental disabilities. Find one program that sounds promising. Email them and find out that you have to wait until April to get more information. Put another reminder in your phone for April.
5) When April rolls around, e-mail the one program that you have decided to put your energy into pursuing based on the information you have. They will send you a five-page form to fill out about your child’s needs. Read a little more and find out that you can sign up for a maximum of two weeks out of the 8 weeks that are offered to all other families. Feel grateful that there is a choice of weeks, tell yourself that two weeks is plenty for a first try at such a program.
6) Scan and e-mail the completed 5-page form and receive a reply that you will be contacted in mid-May for an ‘interview’ to be scheduled in June where it will be determined if the program can provide the support that your child will need to participate successfully.
7) While you wait for the interview, start contacting possible extra support people who may be able to go with your child to the day camp if the support that is offered is not sufficient for your child’s needs.
8) When June rolls around, take your child for the interview with the summer program inclusion staff and share with them that you have found someone who is available to accompany your child if deemed necessary. Discuss that yes, it will likely be necessary, at least for the days when there are outings. Ask if there is any financial support from the inclusion program to help pay for the extra staffing, as it will get costly. Unfortunately there is not.
9) Take the approval letter from the inclusion staff up to the registration desk to pay and discover that the cost of this day camp is very inexpensive for the average family. Paying someone to accompany your child for all of the hours every day will make your costs about five times what all the other families are paying. Feel disgruntled about this.
10) Confirm with your child’s support person what the weeks and hours will be, and inform them that they will have to have a criminal record check completed and this must be submitted the week before camp starts. Pause here, as you are starting to feel organized and ready for summer. It is the middle of June.
11) Practice the field trips that are planned for the day camp. Take pictures and make a social story about the outings, thus giving your child a better chance at success during the day camp field trips. Review the stories several times prior to day camp.
12) When the week before the day camp rolls around in July, receive a message from your child’s support person that they have yet to complete the criminal record check (CRC) but are ‘on it’ and hopefully their status as school board staff (who require annual criminal record checks) will count for something.
13) On the Friday before daycamp starts (at around 5:30pm), find out from support person and inclusion staff that they can not support your child at daycamp because the CRC was not received in time and no, being school board staff does not count for anything.
14) Take a weekend to process the fact that all of your work to give your child a successful experience in a summer recreational program may be for nothing as they will be starting on Monday without the support you have painstakingly arranged.
15) When Monday rolls around and you take your child to day camp, not knowing what to expect, you may want to expect some big feelings that come not just from your child, who is refusing to enter the day camp space, but also from yourself. Do your best to contain your own big feelings so that your child senses that all will be well, while at the same time feel a bit unsure that all will be well.
16) Finally leave your child with the day camp staff and go to your car and cry. You’ve earned it.
17) When it’s time to pick up your child from day one of camp and it sounds like there will be no movement on the staff’s part with regards to allowing your support person to attend, ask which superiors you need to talk to.
18) Go home and write an e-mail to the inclusion program coordinator politely reviewing the situation and kindly asking for an exemption to their CRC regulation as soon as possible so that your child can have the support they need. Also call and leave a voicemail to ensure the message is received.
19) Feel grateful that you and your husband have flexible work schedules so that you can do the drop-off and pick-up from the day camp’s outing the next day, since there is no 1:1 support to ensure your child’s safety on public transit with the rest of the group.
20) At 9:30pm on the night before the most exciting daycamp outing of the week (day 3), receive an e-mail confirming that your support person has been approved to attend. Your child will finally get both the support and inclusion that you hoped for in all of this business. Feel happy but also exhausted. Go to bed.
The layers of privilege that allowed me to weather this little storm and continue on to have some success with C’s first day camp experience are plenty. First of all, we weren’t relying on this program for childcare, so both my husband and I were available to ‘fill in the gaps’ until things were sorted. Second, we are so lucky that we know someone we trust to support C in the program, and have the means to pay them a somewhat decent wage (I would pay more if I could) to do the work. Third, I had the capacity and energy to push back when a barrier presented itself, largely due to the amount of support I have in my life that keeps me functioning at a decent level.
There are so many families with children who have needs beyond ours, many of whom have few to none of these layers of privilege and support in place. What do they do every summer? Somehow they are making it work, and often it is the moms who do the work. Often it is the moms who are providing the childcare, the recreation, the stimulation, the everything, all summer. If they are lucky, the moms have a partner who can do paid work outside of the home to support their inside the home unpaid work. If they are lucky, they have found supports, financially or socially or physically, that take some of the pressure off, some of the time.
I work with many families in the situation noted above, and I hope that the support I can offer by listening with an experienced ear is helpful to them, and that the hour that their child spends with me here and there provides them with a little breather if they need it. And I hope that if you ever find yourself in a position where you can help a family make it through these long two months of summer, you will think of this story and provide any support that you can.
