A Special Life Bond – The Wind Beneath My Wings
The unique bond between a parent and a special needs child is astounding. My son, Douglas, and I share a very close and wonderfully special relationship. I am a single mom, and he has both autism and childhood schizophrenia. A lot of people would think that this sounds very difficult to live with, and they would not be wrong. But, even though it is difficult, I have learned that raising a child with special needs has been the most amazing blessing of my life.
Because Douglas needs a lot more help than “normal” children, he and I have developed a very close, special and loving bond. I am always there for him, and he knows he can always count on me. We do many fun things together. We do little things that enrich every day, such as watching movies and reading stories together. Right now his favorite cartoon is Spongebob Squarepants, so quite often we hear the sound of the Spongebob theme song, and Spongebob’s goofy laugh resounding throughout the house.
And at bedtime, he likes it when I read him stories. Some of his favorite stories to listen to are the tales of Brother Bear and Sister Bear in the Berenstain Bear’s books. These stories always make Douglas smile before I tuck him into bed and give him a final hug and kiss for the night. We also do memorable activities, such as camping together every summer and vacationing at Wisconsin Dells. These are special times for just us. At these times we can just relax and enjoy ourselves without worrying about all the stress of the rest of the world, and at these times, our love for each other shines through so strongly that it outshines every difficulty that we have.
Through our experiences, I have learned a lot. I have developed a deep understanding of autism, schizophrenia, and many different techniques used to help children with special needs through difficult times. I have also been able to develop a clearer picture of what goes on in their minds as compared to how people without special needs perceive the world. I have had extensive training throughout our everyday life. When Douglas was five years old, he started intensive in-home autism therapy. So, we had autism therapists working in our home very closely with us. They were here 24 hours per week for three years of our life.
They helped us in more ways than I could have ever imagined. They worked with Douglas on learning skills for socializing and techniques for occupational therapy. They helped him practice life skills such as dressing himself and brushing his teeth. They worked with him on having patience and being able to focus on activities for longer periods of time. And through all of these teachings I was directly involved, so as they were teaching him, they were also demonstrating for me how I could help him myself. And by working together with them, I was able to learn an abundance of information and techniques that helped me understand how Douglas learns and how to help him get through difficult times and meltdowns. Learning how to help him was a huge step in bringing us closer together. This new knowledge in itself truly enriched our lives.
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I have also learned that not everything has to be perfect and you don’t have to conform to other people’s rules. Douglas loves to re-arrange things. He rearranges our furniture and decorations three to four times a week. This is something that is special to him. He loves the feeling of accomplishment and the sense of pride that comes along with a job well done. The decorations and furniture in our house may be ever-changing, but the love and comfort in our home stay the same because when he is happy, it radiates throughout the whole house.
And, though he is only 12 years old, while all of the other kids at school wear T-shirts and comfortable clothing, his favorite clothes to wear are a suit and tie, and instead of a backpack, he chooses to carry a briefcase. He loves looking professional and accomplished, like a businessman. He lets his total uniqueness shine through, and he has taught me not to be afraid to show who I really am.
He has also taught me about myself. He helped me discover my personal strengths and weaknesses. I learned to develop a lot of patience. I have never been a person that has a lot of patience, but I have found that it takes what seems like never-ending patience to go through each and every day. I also learned that my courage is much stronger than I thought it was.
The battles we fight to get through everyday life, just to get our voices heard and to make sure Douglas is getting the best help available are some of the most difficult battles I have ever fought in my life. I was always very shy and afraid to speak in public, but now I go to the Individualized Education Program (IEP) meetings at school and team meetings with all of his caseworkers and counselors every month.
I now advocate for him and speak with courage and confidence to make sure that Douglas is getting the best help possible. I learned that I never give up. No matter how angry Douglas gets or how many meltdowns he has, I still keep striving forward, one step at a time. There may be days when all I want to do is sit down and cry, but I always get back up and keep on going. I could never give up on helping my son. He is the most beautiful, wonderful and amazing blessing I have ever received. Knowing that I have Douglas in my life fills my heart with happiness. I have learned how it feels to be unconditionally loved and how amazing it feels to hug him close. And most importantly I have learned how much love my heart is filled with for my son each and every single day of my life.
This article was featured in Issue 77 – Achieving Better Health with ASD