We’re in the middle of summer here in New Jersey, and we are fortunate to live in a district that provides an Extended School Year for children with disabilities. Those of you with a special need’s child know how important routine and schedules are for them. When my son, Michael, isn’t on a routine, especially a schedule that has been implemented since September, life can be rough. It’s okay though because I try to prepare for it by being one step ahead for the entire summer. With that said, I know there are a lot of parents out there who don’t know exactly what to do. I’ve teamed up with our BCBA, Sharon Balsamo, to offer some tips and suggestions to keep everything running smooth for the summer.
Before sharing tips and suggestions, I wanted to talk to you about the next few months from a parent’s perspective. If you follow me on Instagram, you already know that I’ve been feeling the effects of summer schedule changes with Michael. His sleep pattern has been off the last three nights and we are at the beginning of our extended school year. As I am about to make coffee for myself, I wanted to let you know you are not alone. If you ever have a question or an issue, I’d be happy to help. If I don’t have the answers, I am happy to ask our therapist and BCBA for advice. I know they are all more than willing to help. ABA, Speech, OT and PT therapy is expensive and if you’re not in the position to have home therapy right now, it’s okay. Not only would I like to help you, there are so many great autism blogs, Instagram and Facebook accounts out there to offer help and suggestions. Don’t feel as though you are alone in this. The one thing I have learned since starting this blog is how my experiences on this autism journey can be helpful to others. I’ve also learned a great deal from others and at the end of this post, I will be sure and share some of these resources with you.
Identifying and Anticipating Problem Solving
Changes in Routine – Obviously, this is exactly what has brought us here. School’s out and whether your school district provides an extended school year, it’s going to be a challenge as the school schedule itself could be less hours or even days. For us here in my district, my son has Fridays off. Using Visual Schedules can be helpful to explain the changes in routines.
Not understanding the rules of the new environment – Depending on how your child is at understanding what is going on around them, this could be difficult to work on. The last day of school, I repeatedly told my son, today is the last day of regular school with Ms. ____. Next week you start school with Ms. _________. Your schedule is going to change a little, but you will still go to school, work on your programs, see your friends and have fun. I try to let him know ahead of time what is going to happen next.
Difficulty understanding language – This one is tricky for Michael. There are times when I know 100% that Michael understands what I am saying but then there are times when I’m not so sure. I know his therapist will insist he does. I’m not too sure. But it’s okay, because it’s not for me to say whether he does or doesn’t. It’s my job to talk to him, tell him what he needs to know, and hope that he understands what I’m talking about. If you aren’t sure consider using a social story with your child. Although, I haven’t personally used one with Michael, I know he has been exposed to them in school and from what they tell me, he does well with them. I can always provide samples of social stories if anyone needs it.
Sensory Impairments – In the past, I’ve always said Michael doesn’t have many sensory issues. I was so wrong. I have noticed a lot more issues with sound, which seems to be selective with him. Sometimes loud sounds or noises immediately has him putting his hands over his ears, but it really depends on the situation or where we are. I find that when we explain to him what the noise is, sometimes he does seem to respond to it. If they are sounds that are relatively normal, I tell him It’s okay, take your hands down and listen, it’s only a lawnmower, a blender, etc.
Skill Deficits – Taking into consideration Michael’s skill level and what he is working on, I must modify the activities he can do. I know I’m not going to be able to realistically expect Michael to play a game of baseball with his brother. However, I do know that I can have them take turns and throw the ball back and forth to each other. It’s all in knowing what your child’s skill level is.
Negative Attention – This is a big one. It took me awhile to understand and be able to learn how to walk away rather than engage in maladaptive behavior. When Michael is having a tantrum, meltdown, whatever you want to call it, it’s better for me not to say to him, what is wrong? Why are you acting this way? What do you want? Even with a neurotypical child, it’s always best not to give attention to negative behavior. Believe me, my instinct was to do just that. Finally, after working with Michael’s BCBA and therapist, I know the steps to take. A few weeks ago, I found a Calm Card. Like a Visual Schedule or a First This, Then That Board, the calm board consists of three spaces to attach specific that will give your child a choice of what they can do to calm themselves down. For example, if your child likes to do puzzles, take deep breaths, or count to ten to calm down, these can be a few examples of what you would have available.
Well-meaning relatives who reinforce problem behaviors – Everyone wants to help you especially when your child is on the floor kicking and screaming. You can be sure someone is going to say to your child, “What’s wrong?” “Do you want this or that…?” It’s so hard because you appreciate their help, but you don’t want them to engage in the negative behavior either. It may also be hard for them to watch as you, the parent, ignores the behavior and says nothing. I will then have to explain that when the behavior stops, I’ll be more than happy to engage in conversation. One of the best ways to handle this is to simply explain to your family and friends the situation and how to handle any problem behaviors correctly.
So, what can you do to help you get through the summer months? Being prepared is the best thing to do.
Review the rules with your child before entering new environments. It’s always best to let them know ahead of time where you are going and what to expect. Bring toys or objects with you that will occupy your child during “downtime” or transitions. I don’t leave the house without Michael’s IPad. It’s an absolute must-have item when going anywhere. Don’t forget sensory breaks! I know Michael needs them. Whether it’s running, jumping on the trampoline, swing or squeezes, it is something we must keep in mind.
Using visual schedules of reminders or keeping a predictable routine or schedule are helpful. This is the first year we are using a visual schedule at home. After his teacher told me how well he does with it at school, we figured we would give it a try here at home. I’ll write more about it and how it’s working out in a later post.
This year Michael received his AAC device. We are consistently using it at home during the summer. It goes with us when we are going out and will be taking it with us to Florida in August. All our home therapists use it during his sessions as well.
The greatest help in keeping Michael happy during the summer is providing numerous structured leisure activities. The more we keep him on a schedule, the better he is. When we plan our weekends, even if we don’t need to go anywhere, sometimes a ride in the car is enough of a break for him.
Also, during the summer, our therapist will continue to work on domestic and self-care skills as well as social skills. Michael is happy to sit down and work on a puzzle, or practice writing his name. If it is structured and he knows what he is working for, he can get through it successfully.
Most special need parents dread this time of the year, regardless if your district offers ESY or not. I’m aware you can also send your child to a variety of different special needs camps. But let’s be serious, not all of us can afford it or are eligible for assistance to cover the cost. You must find a way to make it through these months with as little bumps in the road as possible. For me, I try to schedule as much home therapy as possible.
I hope you have found this helpful and of course, if you have any questions please feel free to leave them in the comments below. If you think your friends or family would find this useful, please share it with them – I’d really appreciate it.