My oldest son, now 18, has special needs. His challenges began early on, at birth (actually before birth). His journey has been amazing, lined with leaps forward and stumbles backward. Through all of it, he has brought with him, to us, something extra special.
He had very low oxygen levels at birth and spent a couple of hours inside an oxygen tent. It was noted that his head size was a bit larger than normal, and his fontanel (soft spot) was abnormally large, spanning from his forehead to the back of his head. Initially, they thought it could be hydrocephalus, but that was not the case. We went home.
At around 7 weeks old, my son began having seizures. He was hospitalized, and I was told he had a rare syndrome which would very likely take his life, only after it debilitated him first – probably all within a year. Wow. I was a young mom at the time, only 17 years old. With my mom by my side, the roller coaster of small strides forward and scary falls backward, was just beginning.
Months later, I was told the docs had it all wrong. At that point, they thought he appeared to be recovering from “some unknown infection perhaps”, and it didn’t appear he had that rare syndrome after all, considering his MRI looked better.
My son was kept on a regimen of phenobarbital, a potent barbiturate which kept him lethargic, but kept his seizures under control. Keep in mind this was 18 years ago. Rewind all the medical discoveries and advances by 18 years, along with my own maturity, experience, and educational level. We kept thinking that he would “catch up”. We referred to his slow progression as “delayed”, and obviously it was. We blamed the medication, almost completely.
He landed in the hospital for a more lengthy stay when he was around 9 months old. This time, it was an entirely different type of seizure, which the medical field called Infantile Spasms. They recommended ACTH, to treat it, which had a 50% success rate, they claimed. The others go on to experience mental retardation, other types of seizures, and more. So we said OK. He was started on the shots in the hospital, so they could monitor him since the treatment can be difficult on the body and severely lowers immunity. After a few days, they sent us home, and I continued giving my baby shots daily. It was all quickly interrupted when he came down with a life threatening infectious disease, in his intestinal tract. Initially, they could not diagnose him. His belly was grossly swelled, and the medical team tried to frantically balance one medication side effect with another medication, and keep his electrolytes somewhat normal. He was in real danger of organ failure. They then put him on Vancomycin in an effort to kill the raging infectious bacteria, a potent antibiotic that can have serious side effects – and he was just a baby.
In all of our research, we could only come to one conclusion on how he may have picked up such a nasty infection – Our conclusion was the hospital, when he was initially hospitalized to begin administration of his ACTH therapy.
In the end, he won the battle, my prayers were heard, and he was able to come home with me again.
Later would come his hearing and vision loss diagnosis. So severe, he is considered legally deaf-blind, though he can see some. He will “yell” at me from across the room if I am eating. I am aware some of his sense of what’s happening may also come from his sense of smell, but he does have little vision. He has scarred maculae, central to vision. This means he only has peripheral vision, which is farsighted. He wears glasses to help correct the little vision he does have. There was some confusion as to how such a severe hearing and vision loss, especially with the scarred maculae, could have been missed by all of his doctors up to that point (he was 2 years old at this time). It was suggested that the aggressive antibiotic therapy could have created additional optic and auditory nerve damage. This, we will never know.
So, he is a child with multiple disabilities, the root cause never known. He learned to walk at age 7, after we accompanied him through several oxygen therapy sessions in a hyperbaric chamber. The therapy is traditionally used for scuba divers who get nitrogen narcosis, something that occurs when divers ascend to the water surface too quickly. However, we used the oxygen therapy as a new and natural therapy. The hyperbaric oxygen chamber actually saturates the cells with massive oxygen, and with that level of oxygen – we had heard about some real miracule stories. So we drove him to Canada, and stayed with him for weeks at a time, to try this therapy. After about 5 months, and 3 trips to Canada – each trip consisting of 2 sessions daily over a couple of weeks – he began walking! It was a miracle. He was 7 years old, and previously we were not sure if and when he would walk. But he did. He learned very quickly during this period and has been walking ever since.
His other challenges remain. He did not learn to speak or systematically communicate, though he did pick up some signs early on. Of course he has a special language, which those of us closest to him know how to interpret. The language consists of certain moans, sounds, faces, movements, and so on. We may not be able to pin point exactly what he needs at all times, but he has a way. For instance, he has learned to pick up his cup and toss it toward me as I walk by, if he wants it filled. He will also bring his hand to his mouth to indicate thirst or hunger.
He is now an adult. Well his age of 18 years, says he is. But he’s still my big baby. He requires my assistance with every little thing. He has 5 younger siblings. At times, they are eager to help. At other times, they are not. They are learning about acceptance, and appreciation. Our family is different. We may have to stop to consider him with every plan we attempt to make, from family trips to eating out. He is most comfortable where his surroundings are most familiar and he can anticipate what’s next. Of course, that is thrown off when we take him out. And eating? He loves eating, and will reach out to grab his own food, and then yours when he’s finished with his. So, restaurants can also be tricky though we have made them work for us. We just don’t do it often. Having a child with special needs definitely adds something special. There is special lessons, learned early on – about unconditional love, about patience, about acceptance. I am his mom. We are his family. There is a reason for that. This special man needs a special family.
I have a poem on my wall, which really touched my heart years ago, when he was just a baby. I think I originally read this poem on a wall of Children’s Hospital. I copied it and it’s been on my wall at home since then. Here it is, to all of the moms, children, and families out there, who are so very special! It reads:
The Special Child
The child, yet unborn, spoke with the Father,
“Lord, how will I survive in the this world?
I will not be like other children. My walk may be slower, my speech hard to understand.
I may look different.
What is to become of me?
The Lord replied,
“My precious one, have no fear.
I will give you exceptional parents.
They will love you because
you are special,
not in spite of it.
Though your path through life may be difficult,
your reward will be greater.
You have been blessed with a special ability to love
and those whose lives you touch
will be blessed because you are
so special.”
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...everything is alright.
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