May is Hard for Special Needs Families. Six Ways to Make it Easier.
May 13, 2019

I spend all winter looking forward to Spring and Summer.  I thrive in the sun, the warmth and the renewal promise that Spring brings. 

But I’m a special needs mom and May brings with it some unexpected and unwanted challenges.  And those challenges ALWAYS serve as a lesson for growth but damn, growth hurts sometimes. 

What could possibly make May more difficult than the rest of the year?  I’m glad you asked…

End of school year celebrations, prom, and graduations.  It took me several years to be able to be happy for other people’s achievements.  I really am happy for them.  But it always serves as a reminder of the things my child won’t be participating in.  As the years progress, it stings a bit less and it doesn’t last as long but it’s still there.  And I’m sure it always will be.  And that’s OK.  What’s not OK is to suppress the feelings or to hold on to them.  We don’t ever lose grief, we just learn better ways of living with it.  Mindset is a discipline and May is my month for checking in on how I’m doing with that!

IEP Meetings for the next year.  Most public school systems have end of year IEP meetings to set up next year’s services and accommodations.  My first experience with an IEP team was my last because I determined for me, it was not a good place to put my energy so we home school.  These meetings at the end of the year tend to be a bit rushed because they are trying to get them all done by end of the year (and with ever-increasing autism rates there are more and more to do each year).  If you’ve never attended an IEP, it’s not exactly an empowering experience so imagine having one hour to develop your child’s academic goals and accommodations for the next school year before this one even ends.  Many districts make a policy of NOT offering summer services (Extended Year Services – EYS) unless a child has a demonstrated loss of skills. And this is really a struggle for families because you don’t want your kid to lose skills but you know that if they don’t have services over the summer, the chances are good that they will and then by the time other people recognize it, it’s time for the next school year.   

Mother’s Day.  For the special needs mom, this is a really bitter-sweet day.  Many of our children have no clue what the holiday is, what it entails, why it’s celebrated or what the expectation is.  Yes, we get handmade Mother’s Day cards from school or therapy but we know often times our kids didn’t play much of a role in creating them.  We love our children with all of our hearts.  We know they love us with everything they have and they show us in unique and unexpected ways.  The expectation and hype around celebrating Moms in particular ways doesn’t really fit with our lives.  I’m OK with that now but in the beginning, it was really hard.

Pollen.  The majority of kids with an autism diagnosis also have medical co-morbid conditions that affect their immune systems.  Guess what makes your immune system wonky in May?  That’s right – POLLEN.  And for our kids, that’s a HUGE physical stressor that often leads to behavioral challenges that are beyond their control.   The changes of season in Spring with pollen and then in Fall with mold are quite stressful in a special needs house. You can start to learn more about this here.  

Summer coverage/schedule changes/”vacations”.  When school is out for the summer, what do our special needs kids do?  Well, if you’re lucky you have some sort of therapeutic care that can take over in the days.  This care might be an inclusive summer camp or summer school or just what you create.  But it’s expensive and elusive.  Many families need one parent to remain home in order to care for the child.  Even if you just wanted to get a “baby sitter” for your older special needs child, you’re looking at $10-$15 per hour, IF you can find someone qualified, reliable and available.  May is also the last month of a steady schedule so the anticipatory stress about what’s going to happen in the summer can be quite overwhelming.  And then we watch others effortlessly take family vacations and well, let’s just say for many special needs families – that’s fantasy land!

Friends (or lack thereof).  I am my son’s only friend.  Which isn’t ideal because he’s 16 years old.  The lack of friends issue is something that we all know and worry about but it’s a sort of sub-clinical worry because we have a lot of other things to deal with in the day.  May brings it up though and it’s a reality that we are forced to face.

Visions of the future.  May brings all of the planning needs to our attention – the IEPs, the summer coverage – – – – THE FUTURE.  It’s a scary place because we want things to just work out and we have big fears that they are not going to.  Where will our kids live?  Who will watch out for them?  Will they be safe?  Will they ever have a friend?  Will they have a job?  Will they be healthy and happy?

But like I mentioned at the beginning of this post, May is an opportunity for growth.  And just like nature shows us every Spring with a seed from a tree, we fall…we sprout….we create new roots and then we grow upwards.  Each stage requires pressure and stress in order to get to the next stage.  Deflecting or avoiding that pressure means we don’t grow stronger or wiser. 

My first May as a special needs mom was filled with fear, worry, guilt, anger, and resentment.  This year it’s more reflective and appreciative of how far my son and I have come both together and as individuals.   And dare I say, we’ve even had some fun and laughs.

So, while life looking outwards is often stressful this time of year, my solution has been to focus inward.  Here are a few quick tips to help you if you feel defeated this time of year:

  1.  Take care of yourself, always.  You need to be on your list every day.  Show up for yourself daily.  Here is a presentation I did last year at AutismOne on self-care.  This presentation is tailored for the mom who can’t get away from the house or who doesn’t have the resources to go out and spend money on things or services. 
  2. Create a discipline of mindset.  This starts with simple gratitude practice about what you DO have.  What is your internal narrative?  Start really listening to your own voice and see if your ratio of negative to positive thoughts is out of whack.
  3. Make a plan, work the plan.  This works for summer activities, IEP planning, dietary changes, self-care – basically, strategic planning for yourself.  Nothing is more chaotic than making decisions that are emotionally based and/or based on fear.  Make a plan, work the plan.  Modify as needed.
  4. Learn about the immune system and understand how it affects behavior.  From there, watch and wonder about your child’s health and behaviors.  Next step after that – work to support their immune systems and reduce other stressors (physical/chemical/emotional) so that their bodies and nervous systems are not in such an activated state.  Incorporate regular chiropractic visits as this helps greatly with supporting a healthy immune system. 
  5. Actively make new quality connections both online and in your local community.  Having a circle of supportive people goes a long way to reducing your own stress.  If your child lacks a social network, keep thinking about and creating opportunities for others to join your child in activities that they like (vs. trying to get your child to fit in with other activities).   
  6. Know that you are a boss babe and take care of more stuff in the first half of the day than most other people do in a week.  You are tired for a reason 😊  Communicate to your support network very specifically what you need and how they can help.  Most people want to help but they don’t know what to do and they are afraid they will do the wrong thing or make things worse.  Use those Boss Babe skills and start delegating!!

My best piece of advice for May?  Practice your slow breathing and feel your body and nervous system balance and relax.  And then repeat.  If life feels overwhelming, focus on you’re here and now vs. all of the things that are potentially going to happen in the future.  I practice this simple technique several times a day and it never fails to rejuvenate my spirit and energy so that I CAN tackle those challenges of the future. 

~ Amy Y.