Ready or not – here it comes. For many of us, it is that hot, scorching, sizzling, burning, sweltering time of year filled with sunscreen, extra water bottles and sweat. Oh — it sounds like someone doesn’t like the summertime. No, I’m good as long as I have air conditioning. I know, I know some people like that hot weather…

Making the transition from school into the summer can be challenging for many children. (And I know it can be challenging for the parents too!) Just think – the same adjustments you have to make as the summer approaches, your child has to make too, but with fewer skills to let you know how things are going. With some thought and planning on your part, you can make that change with fewer “bumps”.

Time to Get Planning

Plan for the summer like you do when you send your child back to school.

  1. Make a list of everything that could be happening this summer – hanging out at home, camps, vacation, people visiting, local activities you want to do (swimming, amusement parks, zoo, children’s museum, etc.), extended school year (ESY).
    • If appropriate, ask your child what he/she would like to do. Involve your child as much as you can.
    • Are there any activities you would like to teach your child or focus on over the summer – toileting, making a bed, folding laundry or riding a bike?
    • Ideas for Summer Activities
  2. Get a calendar and pencil in the known activities on the various days. We all know the activities can change, but how you approach them won’t.
    • Maybe get a big calendar and place pictures/words there so your child can see when different events will happen. (I know you have to be careful about causing anxiety too.)
  3. Think about what makes a school day successful and apply that here.
    • Set up a schedule with routine in it.
    • Use a sensory diet, interspersing sensory activities all day long.
    • Use visuals that your child likes (icons, photos, words) for both the schedule and for teaching an activity.

    My son Ian had extended school year and I was able to get it started the week after school was out. Our schedule was basically: breakfast, ESY, lunch, swimming, home, chores, dinner, TV, bedtime. We had variations to that, but they were ‘Ian-driven’ – sometimes he wanted to take a nap instead of going swimming. Or he just wanted to hang out at home or do errands.

  4. Think about the best way to transition your child into the summer. This is really very child-dependent. You want to give them enough information that they know a change is coming, but not too much to cause anxiety.I remember every year in May, Ian would start asking to take a day off school. I could not figure out why until I realized he was transitioning himself into the summer routine of no school. I also think that the school environment was kind of chaotic, which it sometimes is towards the end of the school year, and Ian didn’t like that. We did not do activities during this transition time, but I did use this time to start talking about the change to summer activities.
  5. Know that nothing is ‘set in stone’ and you can make changes along the way.

What About Vacations?

20150328_162503Trickier, but you can still do it. As much as your child needs – set up a schedule with routine, intersperse sensory activities and use visuals. Sometimes the activities are so fun for your child that you won’t need to have a set schedule, but you always want to have a back-up plan for wherever you go.

When we travel we always schedule visits to fire stations (you know, you can visit fire stations everywhere). A quick call ahead of time lets you know whether someone will be there and whether there will be someone there to show you around. Works like a charm for us.

When Others Come to Visit

Think about what is going to work best for you and your child(ren). This is a very individual family decision. Staying with you is one thing, but if visitors also want to do some sight-seeing, you, as a family, may or may not be able to go. It might be too much for your child.

Most people who come to visit us stay in a motel. Ian’s behavior is too unpredictable when people he doesn’t see very often come to visit. Ian ‘picks up’ when there is extra stress in the house and the last thing we want is a behavior episode when others are present.

When it comes to sight-seeing, Ian likes to ride in other people’s cars, so he doesn’t mind doing activities like that. And there is usually food involved.

Final Words of Advice

Get to know the ‘Mosey’.

That is what summer is all about.

Let me know how your summer goes. Hot weather and all.


Jayne Dixon WeberJayne Dixon Weber
has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.

Send me an email at I’d love to hear from you.

Summer Activities

Organizations to contact to see what kind of programs they offer or know about – for people with disabilities:

  1. Local YMCA
  2. Local parks and recreation centers — check regular or therapeutic recreation programs.
  3. Local ARCs
  4. Local disability organizations
  5. State/local Special Olympics
  6. Your church

Specific Activities to Consider

  • .facebook_1430788217313Swimming
  • Basketball
  • Watching TV/movies
  • Baseball
  • Horseback riding/hippo therapy
  • Music (listening, singing)
  • Bike riding
  • Boy Scouts, Cub Scouts, Girl Scouts
  • Bowling
  • Choir (church and school)
  • Theatre for disabled individuals
  • Library
  • Gym/fitness center
  • Dance
  • Arts/crafts
  • Karate

Day Activities in Your Own City/State

  • Search for – ‘Your city/state’, things to do.
  • Do the same search when you go on vacation.

Summer Camps

  • To find an overnight summer camp near you, search for –
    • ‘your state’ summer camps for children with disabilities.
    • You can also search by whatever state you would like to find a camp. Sometimes families will travel to an area, and their child will attend a camp while the parents/other family members sight-see or do activities that would be challenging for their child with Fragile X syndrome.
  • Call your local disability organization to see if they have camps that parents have been happy with.
  • Call your local Arc – they many know of some good camps.

Sampling of Websites

There are many other sites out there, and don’t forget to talk to other parents: