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betsy@sparklinghope.net
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Letting Go

January 26, 2018

 

Raising special needs kids is best described as a blend of pushing forward and pulling back. Our difficulty in letting go is due to being an over-protective parent. Yep, guilty!

 

Like all kids, ours are sent into a new world to explore, but often without the needed skills and abilities. Very early on, we must rely on professionals. educators and family members to help take care of our special needs kids. I still remember that pit in my stomach when I needed to let Sean ride the school bus. From age three to four, I drove Sean to school. But at the teacher's insistence, I let go of my fears and allowed him to ride the little yellow school bus in his second year of special education public preschool. 

 

I can still see him walking away from me with his lunch pail in hand and his over-sized backpack weighing him down. He had no problem with riding the bus. But I was a nervous wreck. We had some "bumps in the road" when he sometimes had to be strapped in so he wouldn't act out. He also went through a phase of throwing objects out the window. But generally, he managed this task well. Eventually, so did I.

 

My over-protectiveness is understandable once you know that I've had to leave Sean since he was eight months old. He received a devastating cancerous brain tumor diagnosis with a 2% chance to live. I nervously left him at night in his metal crib at the Children's Hospital to walk across the street to the Ronald McDonald House to sleep. I could get no rest at the hospital. Leaving my vulnerable baby at night was impossibly difficult. Yet we both survived this task and many more with the generous help of my sister, Pam, and my precious church family. Many more letting-go challenges would come with this season, but thankfully our God of miracles graced Sean with life.

 

Even if you haven't been through a medical crisis, just raising a special needs child comes with many challenges on a daily basis. All parents experience difficulties, but our kids' are magnified and more extreme. Hence, our sense of protection is stronger.

 

Our kids sometimes gain a skill and then retreat from it. Often their skills are much delayed, so we celebrate even the smallest progress. As you can see above, Sean's love for Santa didn't end in the usual elementary years. Some days he believed, some days he didn't. But picking our battles was crucial, and this was one I chose to let go.

 

For many parents, their special needs kids are aggressive. Sometimes it's because they are non-verbal and are frustrated. This was the case with Sean when he was a toddler with only a few words. He was a biter! He gained speech at three and a half years. But he still had trouble expressing emotional language. So the aggression continued. I had to let go of the criticism I heard from other moms of typical kids.

 

When Sean was in fourth grade, a very difficult season began. He began to exhibit more extreme aggression. One day he slugged me in the face. Minutes later with the assistance of the school bus aid, we managed to get him on the school bus. As it chugged away, the shock of the incident electrified my soul and the stream of tears began and would flow for years. I knew that we might have to let go of raising Sean at any moment. The years passed, but the problem did not.

 

By age eighteen, Sean was more aggressive and nearly a foot taller than my five foot frame. I could no longer manage him by myself. I knew he now needed to live outside the home for my safety. But he was a child in his mind. Could you let your third grader go live with strangers? I was devastated at the thought of placing him in a group home, yet I knew it was time to let him go. 

 

While we waited for an available group home, our local Regional Center assisted us by providing an in-home worker to help keep me safe. He came from 3 pm to 9 pm. It was difficult having a stranger in our home, and letting him be in charge of Sean. But before long, Brent felt like family. And we eventually wove him in to our actual family, calling him our third son!

 

Somewhere during those last few years before Brent came to help support us, I began to unravel. My relationship with the Lord had given me overall stability. But Sean's aggression was wearing me down to the bone.  I confided in close friends, family and my doctor. The years of travelling all over the county to visit therapists and specialists, preparing for the nerve-wracking school meetings, the researching, the frantic calls to the police for assistance - they took a heavy toll on my immune system and my brain. I was suffering from Adrenal fatigue. When you experience stress, your Adrenal glands disperse cortisol and epinephrine for the fight or flight reaction. If you are constantly in this state of stress, your Adrenal glands can become fatigued and not work efficiently. 

 

Depression can be another symptom of burnout. Immediate action is required. I added antidepressants to my routine for a few years. Eventually I discovered a healthy alternative to this medication. And my wonderful husband would regularly send me up to visit my sister in WA for a respite. Arlene would treat me like a queen! I would return refreshed and able to battle on for a little while longer. Regular visits with friends also helped keep me afloat, but I was still in this stage of burnout. We needed to have Sean move out.

 

Once Sean finally moved into his first group home, I had a mix of feelings. I was elated because I knew our lives would be more balanced. The pain of living in fear for my safety was very stressful. But a new fear took hold. Would the workers remember his medications properly? Would they feed him properly? I knew they weren't capable of loving him like I would. This was the hardest part. And Sean was very upset with us. He wanted to come home. But we had to let go of raising him. As a result, our healing was ushered in. My husband and I started blossoming. 

 

Sean now lives in an Adult Family Home. This is where a family takes in two clients (adults with special needs) and they meld into the family's routine. They still go to school, a day program or to a job. But they live with a family. Sean has flourished in this more stable environment. He refers to it as "his home". We are grateful to the heavens for their wonderful care of Sean.

 

Connie Hutchinson who has run the Disabilities Ministry at our church for 25 years, said something helpful I will never forget, "All children grow up and move out of their parent's home." This thought has ministered to me many times over the years. Keeping your adult with disabilities living in your home may not be healthy for you or for your "child". They need to learn to fly before you depart from this earth.

 

Even though the letting-go process for us parents with special needs kids is more difficult and never-ending, it is very necessary for them and for you. And with the support of your friends, family, school, professionals and government agencies, you can live a more balanced life. These days, we laugh a lot. All of us. And leaning on God throughout this whole process has kept my hope and joy flowing. Our mourning has turned into dancing. We have a healthier relationship with our son, and the love flows more freely. We're not finished with the many lessons of "letting-go", but now we have more support to help us finish raising our son with gladness!

 

 

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