“Special needs parents are the equivalent of Batman, Captain America, and Incredible Hulk combined with a side of Mary Poppins.” – Unknown
In addition to being a therapist, I am also a mother of two wonderful sons. My youngest is challenged with dyslexia and SPD (Sensory Processing Disorder), which makes in-the-box learning very difficult. Both my sons are very intelligent. Each has a unique pathway of learning and also expressing that intelligence.
For my youngest, “smartness” is most definitely not quantifiable in some sort of standardized testing format…nor is it fair to measure one’s intelligence by some arbitrary, obscure scale of some sort. All the same, that is the world we live in. Moreover, being a special needs parent has it’s fair share of challenges and silver linings. I continue to learn as I go.
I’ve learned a few things along this pathway of special needs parenting I’d like to share with readers and the clients I work with. I believe the best teacher is life itself, and what better way to learn than from our very own children.
I want to share a beautiful poem, entitled, “Welcome to Holland” by Emily Perl Kingsley
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
For the sake of time and space, I am going to share a few tips I have learned in my journey embracing “Holland” that may assist in the very essential need to engage in supreme self-care:
- Enlist your circle of support to assist with tangible help (i.e. childcare, food delivery, homework help, etc) — you will need assistance, regardless if you work outside the home or not (but especially if you do). Look for free and low-cost local resources through your school district, faith communities, social support network, etc.
- Get your own psychotherapist/life coach. Being a special needs parent is taxing X 100. Being a parent is hard, but when you are navigating the IEP system, juggling schleps to occupational therapy or speech therapy appointments, and attempting to simultaneously keep your head above water, you need your own support go-to person (Lisbon, 2017).
- Spend 1:1 time with other children in the family so that they are not overlooked or sidelined due to the special needs of your other child. Dedicate quality time at least weekly with your other child(ren). Special needs sibs are at risk for depression and anxiety — they may also need their own supportive therapy or support group (Winter, 2016).
- Make time for dating your significant other. When there is a special needs situation in a family system, marriages can be tested to the hilt. Very important to place date night as a priority (Winter, 2016).
- Self-Care in the form of good sleep, nutrition and exercise…total essentials to keep mama’s brain health where it needs to be (Kendall-Tackett, 2017).
- Commune in nature and meditate or do yoga. Studies back up the importance of releasing held stress in the body.
- Find creative expression and do it (painting, cooking, dancing, etc). Creative expression also releases held stress and trauma (Malchiodi, 2010).
- Know that with your fortitude, advocacy, resourcefulness and perseverance, your child(ren) will be more than okay in this world…because YOU are their kick-ass mother/caregiver. Your child has learned and continues to learn to love themselves for their unique gifts and contributions to the world. If you have a child with learning challenges, show them the extensive list of successful people who have not only become successful, famous, and talented in their work, but they have done so because of their “gifts” of (dis)abilities. We all learn and express ourselves differently, and with creative brilliance and unique learning styles, our world is a diverse and enriched world.
- As a mama, “Holland” really isn’t so bad. You do end up taking trips to “Italy” and other destinations along the way. You find the tulips in your garden, and it really is ok. It’s just different, and not what was in your original plans.
- I am out of space on this blog post, but stay tuned for more tips….Be proud of your Super Powers as a Special Needs Parent.
Famous people. (n.d.). Retrieved September 17, 2017, from https://www.understood.org/en/learning-attention-issues/personal-stories/famous-people
How Hiking Is Good for Body and Mind. (n.d.). Retrieved September 13, 2017, from http://www.webmd.com/fitness-exercise/features/hiking-body-mind
Lisbon, April (2017).Stretched Thin: Finding Balance Working and Parenting Children with Special Needs: Amazon Digital Services.
Malchiodi, C. A. (2010). The art therapy sourcebook. New York: McGraw-Hill.
Uppitysciencechick. (n.d.). Retrieved September 13, 2017, from http://www.uppitysciencechick.com/
I. (2015). The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk, MD | Key Takeaways, Analysis & Review. San Francisco: IDreamBooks Inc.
Winter, J. (2006). Breakthrough parenting for children with special needs: raising the bar of expectations. San Francisco, CA: Jossey-Bass.