Special Needs Parenting Changes Everything

I’m here to reassure you you’re not alone.

A few years ago, I had a dream about my son Cooper which was a little strange because I rarely dream about my family. I typically dream about people I haven’t seen since elementary school and the cashier at Target. And the occasional nightmare where I can’t remember my locker combination in High School. And if we are being perfectly honest, I rarely dream at all because that would require sleeping. Something I haven’t done for nearly nine years now. 

Anyhow, we were walking along, Cooper and I, hand in hand, on a high up bridge. It was made of rope and wood, very jungle-like. I seemed to have my wits about me because I said to myself, in the dream, why on earth would Cooper and I be in the jungle. This is dangerous but I’ll go with it. 

We walked along for a while, very calmly, each pointing out the vivid colors in the landscape. Vivid greens and blues and reds. It was incredibly beautiful. I could feel the wind in my face and even sense that it was somewhat dangerous. But we were fine. I felt a feeling of calm that I had never felt before. 

Suddenly, I heard a voice. Then it dawned on me. My son was talking. I couldn't believe what I was hearing. He grabbed my face with both hands and pulled me down to his level. He looked right into my eyes and said, ‘mama,’ a word I have never heard before out of his mouth. He went on to tell me a story. I can’t even remember what it was about. I was too busy studying his mouth and watching his lips move. The sounds coming from his mouth were beautiful. I never wanted them to stop. 

Keep talking, keep talking, I silently prayed. ‘Don’t stop.’ 

The most intense joy suddenly washed over me. ‘It’s happening. I knew it would happen. Some day. If we just never gave up. I made it. I lived to hear him speak.’ 

I had a million questions for him, and I could sense that my time was limited. We stood there for what felt like hours, laughing and talking, like mother and son should. I didn’t have to hold him with two hands. He wasn’t running away or dropping to the ground screaming. He wasn’t hurting me or himself. His body was calm and at peace, something I had yet to see in real life. His mind was too. 

‘Cooper, I love you. Do you know that?’ 

Before he could answer I woke up. My pillow felt cold, wet from my tears. Suddenly, I felt angry. I didn’t want to wake up. I willed myself to go back to sleep. I squeezed my eyes shut, trying to get back into the dream. I wanted to hear his answer. I wanted to hear him talk more. I was frantic. ‘Take me back. Take me back.’ But the dream was gone. 

I quickly analyzed every aspect of what I had seen and heard. The bright colors. The overwhelming sense of calm. And my son, he was at peace. He was able to stand still and walk along with me. He was talking. He was understanding. He told me a story. It was all unbelievable really. 

Suddenly, it hit me where we were. We were in heaven. I felt a sadness wash over me, no longer able to hear the sound of his sweet voice. Once again, I found myself grieving something I never had. The words I expected to hear and the life I expected my son to have. 

I have been on the special needs roller coaster for nearly thirteen years now. I know its ups and downs, dips and turns well. I know the unbelievable joy and the unexplainable grief too. I know this isn’t going away and that it may even get harder along the way. And forever. It’s forever. I also know that the most important thing I can do is choose joy and choose to see the unique beauty in a differently abled life. 

Yes, special needs parenting changes everything. But you don’t have to feel like you’re alone. You may not be prepared for everything, but you can read this book and try. Or at the very least feel that you’re not alone with your problems. We all feel stranded on our own family islands, wondering how much of what we’re going through is unique to our situation. I’m here to reassure you you’re not alone. I won’t sugarcoat how hard things can be, and how desperate you may feel at times. But even shared desperation can be a good thing. Knowing that you’re not the only one struggling to be a good parent or a decent person or an attentive spouse. 

Follow me and be comforted knowing that we’re all drifting in similar boats, hidden by the haze and exhaustion of parenting and temporarily unable to see each other. You are not alone. 

Love,
Kate

Upcoming Events

Keynote Presentation with St. Mary’s County Public Schools Partners for Success in Maryland

Join parent and advocate Kate Swenson as she reflects on her family’s journey through an autism diagnosis, early intervention, and transition to school services, and the emotional toll these processes can take on a family. In this presentation she will discuss the transformation she made as not only a parent, but as a person, and the support that parents need from professionals, family members, and those within their community to help their family adjust to this new chapter of life.

Tuesday, April 9th, 2024, 6:00 – 8:00 PM
Forrest Career & Tech Center
Dohrman Room B
24005 Point Lookout Rd Leonardtown, MD 20650

This event is free, but registration is required.
To Register, email Robyn Roberts at partnersforsuccess@smcps.org

ConnectStrong Conference; Charlotte, North Carolina

Join Autism Strong Foundation for a full-day event that will be unlike other autism conferences. ConnectStrong is geared to help families navigate the world of autism with more knowledge, support, and resources while making strong connections to build a community of people who truly understand.

Your ticket includes entry plus:

• Information for the entire ASD spectrum, all ages, and NC/SC-specific information

• Experts, Professionals, and Parent Speakers

• Resource Providers, Bookstore and Merchandise

• Usage of our Interactive Conference App, Whova

• Meals, drinks, and discounted parking

• Recorded access to all sessions post-event

Register here: Event Website (whova.com)
Use code COOPER for early bird pricing

Enjoy Opening and Closing KEYNOTE Sessions with Authors: 
Dr. Barry Prizant and Kate Swenson

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