Mothers of Special Needs Children

In a few days it will be Mother's Day.  Moms:  May your day be filled sticky hugs, sloppy kisses, and a refrigerator front filled with hand-made cards and neatly scrawled sentiments about mothers.

Do you know a mother of a special needs child?  Are you the mother of a child with special needs?

The job of mothering is a difficult one at best.  It is filled with sacrifices, battles, and thankless tasks that never seem to end.  Whether you're married or single, rich or poor, domestic diva or kitchen klutz; whether you're a stay-at-home mom or you work outside the home, or whether you're a mom to children by birth or adoption...or simply by nurturing and loving all the children you meet...  No matter your individual circumstances as a mother, you know that mothering is one of the most difficult and challenging tasks women share.

Add to that the task of parenting a child with special needs, and the task becomes exceptionally difficult and challenging.  I realize that special needs is a broad category.  It can include (to name just a few) parenting children with behavioral and mental health challenges, children with complicated medical histories, children who suffer trauma and abuse, children who are adopted, children who struggle to learn, children who struggle to make friends, children with any range of developmental delays, children  who struggle with physical limitations and disabilities, and many many other possible combinations of complications parents face raising children.

In my mental health practice, I help parents and children deal with a variety of the issues mentioned above, and almost always, by the time I see them, they've tried multiple interventions, been to doctor appointments of multiple specialties, struggled in school, and struggled at home.  They're frequently the object of comments from others, sometimes well-meaning, and sometimes just mean.

One of the first things I find myself discussing with parents in this situation is their own mental health, self-care, and support systems in dealing with the complications of raising a child with special needs.  I want them to know more than anything that it is not bad parenting that causes psychiatric, behavioral, or developmental disorders, but it takes an exceptional parent to dig down deep into reservoirs of untapped strength to raise this child.

That said, the risk of burn-out to parents of children with special needs is high.  Elizabeth Blackburn (winner of Nobel Prize for Psychology or Medicine 2009) studied mothers who raised special needs children over the course of ten years.  She found that mothers of special needs children experienced a shortening of telomeres (protective end of chromosomes).  This process could cause an average of 9-12 years decrease in life expectancy of these mothers.  This is a biological condition similar to what is experienced by combat soldiers.  Increases in other hormones associated with stress also contribute to autoimmune disorders, diabetes, and other chronic health problems.  Certainly, constant stressors of that level go beyond those experienced by other mothers.

It is not only a good idea, but a necessary one, for mothers of children with special needs to seek support and care for themselves.  Here are some ideas of how that can be accomplished.

1. Build Social Supports:  Although difficult to build and maintain, support systems are life-saving.  Social supports are often the only source of much-needed respite.  Many parents of children with special needs say that as they try to build social supports through traditional means (church, school, neighborhood, work), their special needs children create too much stress for friends and other parents to understand and their support systems disappear.  This can be a huge barrier to finding social support, and many parents give up.  Consider social support in tiers with community support being the outer tier, a layer which many families don't have to access frequently.  Children with special needs often have access to community or school programs and resources that other children don't have.  Start with those groups and make friends with like-minded people who can share in child-care and other ideas for respite.  As you do, the outer tier of support becomes an inner, more natural support system.  Also consider looking for funding for respite care provided by trained caregivers.  There are also support groups for parents of children with special needs where it is possible to connect with other parents and build support systems.  Family is another source of built-in support.  If you have children with special needs and live far away from family, ask yourself:  Who lives locally who can give me the same support?  Do you have friends or community groups who have become like family to you?  If not, is it a possibility to move closer to family?  (I work with one family who recently relocated from another state for that very reason and it has made a huge difference in the couple's marriage to have additional support.)  And just a caution:  While internet groups can be helpful and provide sources of contact and information, they lack the human touch that will decrease stress hormones and provide hands on care and support that parents of children with special needs will require.
2. Take Care of You:  Moms of children with special needs will frequently say they don't have time for themselves.  I ran a group for parents of children with special needs for several years, and I was persistent at getting parents to identify things they did for themselves each week during our group check-in.  At first there weren't many responses, but after the question had been out there for several weeks, I started to get answers:  I started taking vitamins...  I went to the doctor...  My mom watched my son while I got a pedicure...  I went out to dinner with my sister...  I painted my bedroom...  I started taking walks with my son...  I went back to bed after my child went to school...  Moms in the group even started sharing ideas of where they could get low-cost haircuts, nails, massages, etc.  All the little things you do for yourself add up to decreased stress and improved health.  If the well is empty, you can't give what your child needs most.
3. Accept Things As They Are:  It's difficult to know when to be a mom warrior (required for mothers of children with special needs) and when to let it go.  If you're starting to feel like you're fighting just to fight...for something...anything...that could help your child, then do a quick assessment of your efforts.  How much time are you putting in?  What are the results?  Are the difficult lifestyle and dietary changes making a difference or are they complicating life in hopes of making a difference?  Are you spending hundreds of dollars a month on supplements and procedures that promise hope and don't deliver?  What would you do with that time and money if you didn't have to make those efforts?  Certainly health is important, but truly assess the progress of your child under each intervention.  Interventions should produce progress, and if they don't, consider different approaches.  Seeking healing and improvement is certainly a necessary part of treatment, but also consider the long-term effects of constantly trying to change or improve the disability vs. enjoying the unique abilities of that child or your family.  Also consider the needs of other family members and the impact of interventions on their sense of normalcy.  Family life is important also.  Interventions are excessive if they take away from every day human interactions (which by the way, are very healing).
4. Don't Forget to Live:  Most likely, the challenges of special needs aren't going away.  As stated above, expend a reasonable amount of effort into the care of your child, but don't forget to live.  Do you enjoy life?  Do you enjoy relationships?  Do you enjoy your children (even the ones with special needs)?  Do you have hobbies and interests outside your children?  Do you and your spouse share a relationship that isn't focused on parenting and medical or therapy visits?  I know one family raising a child with autism who leaves him with family while they go on vacation.  He hates vacations anyway.  It took them years to get to that point, but they enjoy their other children in a different way and notice that their bonding and interactions with their other children improve during those times.  They say that when they look at family vacation pictures, there is always a little pang of sadness that their child with autism isn't a part of those memories, but they celebrate a life they now enjoy when managing his melt-downs no longer controls their lifestyle, and their child with autism is much, much happier in his own home under the watchful care of relatives who are willing to provide that support.  That may not be the answer for everyone, but it is an example of adaptations that work.

The task of parenting special needs children is a difficult one.

Remember:  It takes an exceptional parent to dig down deep into reservoirs of untapped strengths to raise this child.

The honest truth is this:  If the reservoirs aren't there, the unique things you have to offer aren't available either...  Your experience is uniquely your own.

Don't forget to live!

(If you know a  with a special needs child, consider watching their child, or taking them out to lunch...    Celebrate their experience in motherhood.  Help them build their circle of support.)