The Burden of Special Needs

A stranger was overheard in Target telling their mother on the phone what a *burden* it is for her friend to have given birth to a child with Down Syndrome.

I ache.

I go to my car crying. And I am not much of a crier.

It burdens ME to hear a child described as a burden.

Sigh.

Maybe I have it all wrong. Maybe I am fortunate to have CHOSEN children with special needs to adopt. Maybe if I was convinced or hopeful that the baby in my tummy was absolutely flawless, I would be overhwelmed, too, when the baby emerged with differences from the "norm."

God gave me a heart for special needs kids from an early age. So when others made fun of the special needs kids at school, I hung out with them...as friends. I wasn't someone who was condescending myself as a "normal" person to hang out with the "abnormal" kids....I was humbled by their joy and innocence and passion for life that others missed.

I have 2 biological children with learning differences and 3 adopted children with varying special needs. I can tell you that I do not count myself BURDENED by what others perceive as abnormalities. I love the uniqueness! I love the challenges, and I will tell you why!

When my oldest child learned to walk at 10 months old, I was overjoyed. I was so proud, as if I had somehow equipped her with this amazing talent to shuffle her feet and maintain balance with that huge gummy smile on her face. =0)

Contrast that with the little boy we are hoping to adopt in a few months. Baby J (now preschooler J) was with us from birth to 14 months when he was in foster care. I always suspected he had mild autism and cerebral palsy, and turns out my suspicions were correct. Every day, my two teenagers daughters and I laid on the floor and encouraged him to crawl, and it took six months from the time we started working on it at 6 months old. I cannot describe for you the type of celebration we have at home when one of our children who has been given a diagnosis that says, "They won't...." or "They probably can't..." actually proves the specialists wrong. It isn't a quest of ours, by any means, to push children to exceed expecations. =0) It IS a quest of ours to create an environment where kids CAN meet their potential. And the joy is simply indescrible.

My son, the Stunt Man, was born with 2 partially deleted chromsomes, resulting in DiGeorge Syndrome, 5 heart defects, Primary Immunodeficiency, palate abnormalities, high chance for mental illness, and they say, almost certain "retardation." He also has 14 q deletion which is very rare and we suspect is causing his Prader Willi behaviors. I have a letter from a geneticist that I received when he was a month old, telling me he has a double whammy chance of this, that, and the other. He's had open heart surgery and will have more in the future. They say he won't potty train until he is 5 and will do everything 1-3 years behind every other kid.

But let me tell you what this kid is: A ball of energy who LOVES to tease and is ornery beyond belief. He fancies himself a comedian and is quite the lady charmer. We don't know what his life expectancy is, but I have no doubt that when his appointed time comes, whether he is 25 or 95, everyone will be able to say, "He lived life on full blast."

And let me tell you what he did last week. He told me he had to poop poop. And he did so on the potty. And before he turned 3 yesterday, he knew all of his colors and shapes. He can also recognize his numbers 1-10 and all of his letters BY SIGHT. In essence, he is READING letters, all before he is 3. Is his speech almost unintelligble to most people? Yes. Does he have a lot of sensory issues that cause him to become overwhelmed? Yes. Does he have problems with dexterity and small motor skills? Is he delayed in some areas? Absolutely. Do I care? PU-LEASE!

When this boy does something new, we do more than get that giddy parent feeling...we feel like he just walked on water. When he learned to walk at 9 months old, every member of our household over 3 feet tall jumped up and down and screamed like we just won the brand new car on the Price is Right!

Joy.

Special needs kids....it isn't about what they CAN'T do.

Its about what they CAN do.

And its about how they minister to the hearts of the "perfectly normal" people who think they have it all together and find that those who are maybe a little different or delayed can find the joy unspeakable the old song talks about, and make every day FULL.

There is NO burden here as we parent our 5 abnormal kids or the one we are in the process of adopting with autism and CP.

Every single day is like coming down the stairs on Christmas morning and seeing that big BMX bike parked next to the tree with the big red bow on it and goofy, sleepy grins on the faces of mom and dad.