For typical children and their parents, summers may be the most exciting time.
Picnics, campsites, BBQs, beeches, pool parties, fun parks, and yes a trip to Disney may be on the cards.
However, for parents with a young child with Autism, this could often be the most stressful time.
The dreaded word "Regression" replays in their mind like a broken record.
The paramount concern being whether their child could turn up worst on his or her first day at school after summer recesses? What acquired skills for which everyone has worked so hard throughout the year could he or she loose? As a parent, am I doing enough to prevent the "regression"? How do I know I am doing what is required? The self guilt could pile up building up the stress levels.
Fortunately, parents should not be so hard on themselves and yes, if they have taken steps to keep their child engaged and happy in a safe and secure environment, they sure have done what is needed.
There will be some natural regression in most cases but just like any championship game, one often needs to take a few steps back to generate the scoring moves.
Besides, parents shouldn't forget that this is one game that they are playing with their heart and soul so the outcome is bound to be good! Summer Recess Summer recess could have positive impact on some children with autism.
For example, summer recess could provide a welcome break for these kids to get over the school overload such as the often dreaded language arts classes that involve much abstraction and comprehension - a huge challenge for kids with autism.
By getting some of the structure removed, the child may be able to interact in a more relaxed and forgiving social environment with family and friends.
For many children with autism, who prosper on routine, there could be some regression in academic and social skills due to the absence of intense structure, training and regular contact with the peers.
Many times these children fail to remember the names of their peers, teachers, and aids when they return to school after summer recess.
Certain school based therapies such as speech, Occupational Therapy (OT) and Physical Therapy (PT) may also get discontinued, leading to some regression in speech, language and motor skills.
Discontinuation of evening or weekend programs including games, buddy and social skills groups that the child may be participating privately could further exacerbate regressive behaviors, leaving the parents with an even bigger void to fill.
The challenge before parents is therefore to make optimal use of the various options that are available and drive the best possible outcome.
Extended School Year (ESY)/ Summer School Many school districts offer Extended School Year (ESY) ranging from 4 to 6 weeks during summer recess for special needs kids including those with autism.
In order for the parents to avail this service, ESY needs to be included in the Individualized Education Plan (IEP) after clear recognition that without ESY, the child is likely to regress.
Generally, the ESY programs are less structured and their primary objective is to prevent or in worst case limit regression.
Services offered are less intense and most often don't include therapies.
However, the ESY programs do often combine some fun activities such as water play, playground time, and walk to the local parks.
On the negative side, some of the ESY programs that used to offer day trips to public sites of interests, or develop daily living skills have been adversely affected by budgetary constraints and may not be able to support transportation, tickets, and other costs.
In addition, some ESY programs tend to mix children with varying abilities within the same group that may limit the positive impact on a child who is high functioning.
For most parents however, these programs are a great alternative that are completely free and provide additional convenience such as door to door transportation service.
The child is also with familiar faces in the school so experiences little adjustment issues.
More recently however, budgetary constraints have forced certain school districts to discontinue ESY programs from the child's IEP in case the child didn't or only partially availed them in the past.
So, if a child has ESY included in his or her IEP, parents should ensure that the offered services are availed or risk losing them.
Summer camps Summer camps offer a variety of options such as full or partial day camps, sleepover camps and specialized camps that may target certain behavior, social or academic skills.
Many of the camps are privately run but financial help is sometimes available if planned early and appropriate steps are undertaken to secure it.
Full inclusion day camps could be a major challenge to the first timers and may sometimes create adverse social pressure to the detriment of an autistic child.
Lack of appropriate structure combined with little relevant experience that some of the counselors may have in dealing with children with autism could be stressful for the child even with as low as 1:3 counselor support.
Further, day trips in a bus full of typical children could be too noisy and stimulating for the autistic child and may trigger negative behaviors including meltdowns that the camp staff may be ill-equipped to handle.
Special group settings within day camps with trained counselors is generally more suitable but does have a drawback if children with different developmental levels and specialized needs are grouped together as it may inhibit interaction and engagement.
Specialized partial day camps with some structure, and filled with engaging activities may suit the child better as these programs are able to provide the right mix of structure, relaxation and fun.
Sleepover camps may be a major challenge for young children with autism as they demand a lot more in the form of social, behavior and living skills than the child may be capable of handling.
However, short stay away for a couple of days may be tried provided parents interview the assigned counselors and are comfortable that they could handle their child's unique needs.
As the children grow older, such camps become more suitable and could provide good learning opportunity in developing their social and living skills.
Finally, some highly targeted behavior and academic camps run by trained professionals are suited well for these children as they attempt to group them with similar developmental capabilities and provide rich support system including bi-directional feedback channel with the parents.
Such camps are however generally expensive and only available at very few locations.
Home & Travel Parent's own effort at home with their child is likely to make the single biggest difference in his or her development.
For working parents, finding sufficient time off work over the 9-10 weeks during summer recess could be a major challenge.
Ideally, parents should plan ahead and try to split vacation days so that one of them is able to spend time with the child during the week.
Having some time off middle of the week is better than having a stretched weekend as it maintains continuity of engagement.
For a single parent, any help from immediate family or friends should be welcome.
In preparation of summer recess, parents should review their child's progress on IEP with his or her teachers, and the child study team to understand his or her strengths and development needs and identify any specific skills that they should target during the summer recess.
They should prepare a plan to work on the weaker skills and incorporate new skills by integrating their development into the child's daily routine e.
g.
waiting in a line for a ride in a fun park may teach the child patience, concept of length and time.
This is feasible if the parent is able to repeatedly show and tell, often with exaggerated facial and hand gestures, what a long line or a long wait time means.
This may come at the bewilderment and amusement of the members of general public around them which the parent should learn to ignore.
Social stories are a great tool to introduce and master some of the more abstract concepts by autistic children.
Parents can use picture cards to create social stories as the child, being primarily a visual learner, is able to master newer concepts much more rapidly this way.
If a vacation trip is planned such as a campsite visit, parents should draw pictures and talk about the experience that the child is likely to get.
On a road trip by car, talk to the child about the states, towns, and landmarks pointing to a map in hand.
Navigation tools on iPad offer reasonable sized display to help the child grasp concept such as direction, distance and time.
Parents should also keep a daily journal on activities that he or she enjoyed most and those where he or she struggled.
Parents should also try to avoid electronic gadgets in lieu of face to face time.
Some of audio/ visual tools, such as iPad and SIRI, do offer a great learning experience and could be incorporated into the child's routine as a reward.
Finally, many parents find it daunting to work with their child in front of strangers who may give well, "a strange" look.
They should remember however, that with a special needs child, a parent has already undertaken the task "To prepare the World for their child" and it's not the other way around! Medication Start of summer is also a good opportunity to schedule a "well visit" with the child's pediatrician or a follow up visit with the child's development specialist if one is available.
Appraise them on the feedback from the last IEP review with the teachers, therapists and the child study team at school.
If the child is already on medication, summer provides good opportunity to gradually make changes to the dosage, weaning out or introducing new medication.
Parents may also work with the pediatrician to try new therapies.
Normally, this should be done after they have had the opportunity to baseline their child's behavior over a couple of weeks during summer recess.
This would enable them to determine if the changes in medication are effective or in worst case scenario leading to more negative behaviors.
In certain cases, the child's pediatrician may decide to wean away certain medications after negative behaviors are observed or vice versa.
Weaning process could take a few weeks and the summer recess is able to offer plenty of time to complete this step before the school restarts.
It's also advisable to work with a pediatrician who is familiar with the child's medical history and is therefore able do follow-ups with the teachers and caregivers at the child's school.
If alternative therapies are planned such as auditory and sensory integration, summer recess may be a good time to start them.
Aftereffects from such therapies may include increase in sensory perception leading to temporary behavioral changes such as increased hyperactivity, excessive chewing, and flapping which may otherwise be difficult to manage during the regular school session.
Final Word As parents, please don't get discouraged or overwhelmed with so much more that you need to do during summer recess which for most parents should be a relaxing, and enjoyable time.
The bond however, that is created with the child is so much more rewarding and will help build that strong relationship that both the parent and the child will enjoy in time to come.
The above article should not be considered as a "medical advice".
It only briefly summarizes some of my own thoughts and experiences.
Should you have any follow up questions please don't hesitate to contact me.
Kalpana Kumari (Dr K), MD, FAAP