Summers are finally here! For typical child and their parents it may be the most exciting time; picnics, campsites, BBQs, beeches, pool parties, fun parks, and yes, a trip to Disney may also be on cards.
However, for parents with a young child with Autism, this could often be the most stressful time. The dreaded word "Regression" plays in their mind like a broken record. The paramount concern; will my child turn up worst on his first day back at school in fall then the day he left school for summer recesses? What acquired skills for which everyone worked so hard throughout the year could s(he) loose? As a parent, am I doing enough to prevent this "regression"? How do I know I am doing even the minimal needed? The guilt may just keep piling up!
Fortunately, you should not be so hard on yourself and yes, if you have taken steps to keep your child engaged and happy in a safe and secure environment, you sure have done all what is needed. There will be some natural regression in most cases but just like any championship game, you often need to take a few steps back to generate the scoring move. Besides, don't forget that this is one game that you are playing with your heart and soul; the outcome is bound to be good!
Summer Recess
Summer recess could have positive impact on some of children e.g. summer recess could provide a welcome break to get over the school overload such as the often dreaded language/ arts classes that involve so much abstraction and comprehension, and by getting some of the structure removed, your child could interact in a more relaxed and forgiving social environment with family and friends. However, for many of the children who thrive on routine, there could be some regression in academic and social skills due to lack of intense structure, learning and regular contact with their peers. Many times these children fail to remember the names of their peers, teachers and aids when they go back to school in fall. In addition, certain school based therapies such as speech, OT and PT may not continue leading to some regression in speech, language and motor skills. Finally, discontinuation of evening or weekend programs including games, buddy and social skills groups that your kid may be participating privately could further exacerbate the problem and leaves you with even a bigger void to fill.
Your challenge is therefore to make optimal use of the various options that are available to you to drive the best possible outcome.
Extended School Year (ESY)/ Summer School
Many school districts offer extended school year ranging from 4 to 6 weeks during summer recess for these children. In order for parents to avail this service, it needs to be included in the IEP where it should be clearly recognized that without extended school, your child is likely to regress. Generally, these programs are less structured and their primary objective is to prevent or limit regression. Services offered are less intense (and most often don’t include therapies) but do often combine some fun activities such as water play, playground time, and walk to local parks. On the negative side, some programs that used to offer day trips to public sites of interests, have been adversely affected by budgetary constraints and as a result are no longer able to support transportation, tickets etc. Further, some of these programs also tend to mix children with varying abilities in the same group that may limit the positive impact on your kid if s(he) is high functioning. For most parents however, these programs are great alternatives that are completely free and provide additional convenience such as door to door transportation service. Further, your child spends time with familiar faces in school so experiences little adjustment issues.
Finally a caveat; budgetary constraints have also forced certain school districts to remove extended school programs from your child’s IEP if you didn’t or only partially availed them in the past. So if you have ESY included in your child’s IEP, ensure that you do avail the associated services.
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 you plan early and take appropriate steps 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 dealing with children with autism could be stressful for your 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 an your 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 levels of development and specialized needs are grouped together inhibiting interaction and engagement. Specialized partial day camps with some structure and filled with engaging activities may suit your child better as these programs are able to provide the right mix of structure, relaxation and fun. Sleepover camps could be a major challenge for young children with autism as they demand much more in the form of social, behavior and living skills than the child may be ready to handle. However, short stay away for couple of days may be tried provided parents interview the assigned counselors and are comfortable that they could handle your child’s unique needs. As the children grow older, such camps become more suitable and could provide good learning opportunity to develop 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 may only be available in very few locations.
Home & Away
Your own effort at home with your child will most probably make the single biggest difference in his/ her development. For working parents, finding sufficient time off work over the 9-10 weeks during summer recess could be a major challenge. Ideally, you should plan ahead and try to split vacation days so that one of you is able to spend time with your 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 single parent, any help from immediate family or firends should be welcome and sought. Further, its summer time, so do plan some vacation time away from home with the entire family.
In preparation of summer recess, review your child’s progress on IEP with his teachers, and child study team to understand his/ her strengths and development needs and identify any specific skills that you should target during summers. Prepare a plan to work on weaker skills and incorporate new skills by integrating their development into his/ her daily routine e.g. your wait time in a line for a ride in a fun park will teach him/ her patience, concept of time (long/ short) and length (long/ short). This would be feasible if you are able to repeatedly show and tell him/ her (often with exaggerated facial and hand gestures) what a long line or long wait means. This could often come at bewilderment and amusement of the members of general public around you which in my humble opinion you should get completely oblivious to.
Social stories are a great tool to introduce and master some of the more abstract concepts with your child. You could use picture cards to create social stories as your child primarily being a visual learner s(he) is going to learn newer concepts much faster this way. If you are planning a vacation trip such as campsite visit, draw pictures and talk the experience over that s(he) is likely to go through. On a road trip by car talk to him/her about states and towns pointing to a map in hand. Navigation tools on ipad offer reasonable sized display e.g. for him/ her to grasp the concept of direction, distance and time. Keep a daily journal on activities that s(he) enjoyed most and those where s(he) struggled. Try to avoid electronic gadgets in lieu of face to face time; however some of the audio/ visual tools (e.g. ipad and siri) do offer a great learning experience so incorporate them into their routine as a reward.
Finally, many parents find it daunting to work (with exaggerated gestures) in front of strangers who may give you well, “a strange” look. Do remember however, that with your special child, you as a parent have already undertaken the task “To prepare the World for him/ her” and it’s no longer the other way around!
Medication
Start of summer is also a good opportunity to schedule a “well visit” with your pediatrician or a follow up visit with your child development specialist if you also work with one. Appraise them on the feedback (including from school) from your last IEP review with teachers, therapists and the child study team. If your child is already on medication, summer provides good opportunity to gradually make changes to the dosage, weaning out or introducing new medication. You may also work with your pediatrician to try new therapies. Normally, this should be done after you have had the opportunity to baseline your child’s behavior over a couple of weeks during summer recess. This would enable you to determine if the changes in medication are effective or worst detrimental leading to more negative behaviors. In certain cases, your pediatrician may decide to wean away from certain medication after you report negative behaviors or when no negative behaviors, get introduced as a result. Such weaning could take a few weeks and the summer recess is able to offer you plenty of time to complete this step before the school re-commences. It’s generally advisable to work with ‘the’ pediatrician who is familiar with your child’s medical history and is therefore able to work with the concerned experts at your child’s school for the overall program (including medication) to be more effectively managed.
If you were planning alternative therapies such as for auditory and sensory integration, summer recess again may be a good time. Some of these therapies may increase the sensory perception leading to temporary behavioral changes such as increased hyperactivity, excessive chewing, flapping etc which may be difficult to manage during school session then they would be at home.
Final Word
As parents, please don't get discouraged or overwhelmed with so much more that you need to do during what for most parents is a relaxing, enjoyable time. The additional bond that you would create with your child would be so much more satisfying and rewarding and likely help build that strong relationship that you will both enjoy for years to come.
And finally, 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 post them on my blog or send me email at: drk@riseNshinepeds.com.”
I wish you a very enjoyable summer and great success with your child!
Kalpana Kumari (Dr K), MD, FAAP
www.riseNshinepeds.com
