Misunderstood – The Parent of a Child with Special Needs (Part I)

Tears of a Parent |The Parent of a Child with Special Needs“I work on stifling the tears. Sitting in the dark, the only place that feels warm, comforting, understanding. I feel the swell, the familiar stiffness of my body as I try to control what is to come about. No one can see me. No one can hear. I think about what is brining me here. Not a place I’d ever thought I’d be. Not a place I want to stay. A place of loneliness, desolation, despair and depression….”

Personally, I’ve felt this as a teenager, a young adult, a married woman, as a parent. By far….By far, feeling this as a parent of a child with special needs finds new depths unmatched by any experience prior, by all experiences combined. Not even the hormone filled, ‘crazies’ of a teenage girl could touch this. It comes for different reasons, for uncontrollable circumstances that you’d give your life to change. It comes because those surrounding you fain understanding where there is none, only to be revealed in time.

Various online writings such as those you’d find on Special Happens seek to demolish the waves of despair by attempting to enlighten those who are willing, bring a fuller understanding to those seeking, give a description to those wondering and comfort to those experiencing. These writings seek to explain why our families adhere to such strict routines, why gatherings are generally off limits, why the perimeters of children’s play-dates come with strong requests for certain times, certain places…why our families may prefer the comfort of our own homes.

To enlist the realization that breaks from the life of being a special needs parent are few. There are nutritional needs to be met, life-threatening allergies to consider, meltdowns to manage, routines to follow, medications to deliver. There aren’t many, if any, in our pool of resources that can watch our children so we can shower much less grab some bonding time with our spouse, or a girl’s night out. Money can be tight, or not exist at all. And many times, having the support of said spouse is lacking, or (s)he is not in the picture at all.

For blogs like Special Happens, the best we can do is to ask all those who are willing to listen, to respect our answers, our decisions, our requests. They aren’t made lightly but with the full pressure of satisfying your needs, our children’s needs, the requirements that are demanded and our own split between being a person and being a parent of a child with special needs.

Trust in us.  Respect us.  Believe that we are otherwise fun, capable, willing people who are bound by the loves of our lives, and though we’d have it no other way, we need connection and to be wrapped in the warmth of understanding from another too.


By Karen Taylor-Good and Lisa Aschmann
Their YouTube Link is here: The Life That’s Chosen Me

This was written by me, for me…and a friend…and all the other parents and caregivers of children and adults with intellectual and physical challenges.  Please share.

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

10 Responses to Misunderstood – The Parent of a Child with Special Needs (Part I)

  1. Jenny says:

    I have been there, friend. You are so good at getting our experiences down on paper in a way that those “outside” our world may be able to get a glimpse. I am glad God has given you that ability. I look forward to the next post.

    • Gina says:

      Jenny~ We both, and many more, have been given the ability…I do hope we are able to truly make that difference! Thank you for such kind words!

  2. Daria says:

    Again with breaking the “no making me cry pact”…. This was beautiful, the music, the message, the words. Someone told me this week that I was a strong woman – but I have nothing on you or other parents of special needs kiddos. I guess, as a friend, I just want you to know you don’t always have to be strong around me. If there is anything I can do – please let me know. I do have 3 kids that are looking for playdates with open schedules ;) – that post about what others can do for you or how we can help would still be much appreciated.

    • Gina says:

      Daria~ You may *me* cry….thank you for your kindness. I will always remember it. AND, I’ll be contacting you for a play date. We need some! That post…yes, my friend. It’s coming.

  3. Caryn says:

    You wrote this on MY blog today, too. I scrapped what I meant to post, and linked to you, instead. Thank you.

    • Gina says:

      Caryn~ Anytime and always! Glad you were able to share this with your readers. I just hope these are the words….

      • Joan says:

        We are, as Mothers with special needs chireldn, educators to the world at large. Often questions hurt, They are based in a lack of knowledge and understanding. Sometimes if we take the time to explain understanding is gained and empathy (not sympathy) is gained and the query causing another to grow in compassion. However there are some who have notions and beliefs based so strongly that they will not be able to gain the understanding that might enlighten them to the views of a single experience shared. Accusations are hurtful. A thief can have a hand cut off for stealing food, in some countries, but that may make the desperation of hunger a greater threat if you are starving you just might sacrifice a hand to calm the belly.. If one has never experienced hunger he might be all for cutting off the hand. God forbid he ever know such desperation as what you are experiencing. My hope is that if someone ever come to “anoun” hungry that he offer the poor soul a morsel. Rather than to neglect and turn the man into a food thief.You have become desperate and desperation calls for desperate measure. The measure may be against the Law but the law was indented to be for the people not a judge. Mercy is a balm, compassionate people comfort.

  4. I have the utmost respect for you families with special needs children. You are true heroes in my eyes!!!

  5. Brynn Flaherty says:

    Your blog is really beautiful… I thought some of your readers might benefit from my colleague’s website, http://www.developmentalcheckup3.com. It provides a quick, very affordable, and informative online assessment of your child’s development, with information on autism, aspergers, and many other social, emotional, and physical developmental delays. Recent blog on understanding autism – http://www.developmentalcheckup3.com/page.cfm?pageid=18781&feedid=59&feedcategoryid=217

    I hope this helps even just one parent out there.

  6. It’s not fair is it? And it’s not easy. I like your mission and how you can help us walk a mile in another’s shoes, you’ve given the world so much with your writing. Thank you!

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