Child Of The Month

Joshua
This story first appeared in The Mirror in 1994 and
was written by Donna Bennett, the founder of IDEAS.

Joshua was our firstborn. He came into the world weighing 7 lb. 10 1/4 oz., with some help from forceps during delivery. He had a low heart rate and Apgar scores of 6 and 9, however, no one suspected then that he might have a serious disability. It took us a long time to realize that Joshua had serious delays. My mother and others suspected problems but didn’t say anything to us at the time. We eventually became concerned about Joshua’s clumsiness and slow development and took him to a pediatric neurologist when he was 2 ½ years old, just a month before I was due to deliver my daughter. Little did we know we would be so challenged when we decided to start our family. Looking back on it, I’m glad we didn’t know the truth until our daughter was just about to be born. Thank you, Lord for not letting me know because I would never have considered having a second child.

A month after Josh’s diagnosis, I delivered a healthy baby girl. Had she been our first child we would have recognized Josh’s delays a lot sooner. For the next four years of our lives, it was like having twins. We would put Elizabeth in the playpen and as soon as we turned our backs, Josh would climb in with her - he liked her baby toys better than his own play things. Every time I would nurse her he would want to get up on my lap; if I held her he wanted to be held. I’m glad God gave me two arms and legs. If we laid her on the sofa, he would try to sit on her. Often I would make meals with one child on each hip. When we went to the grocery store, she would go in the cart and Josh helped push the cart or stroller. He went to pre-school four days a week, three hours a day and in order to chauffeur him to school and his many appointments, I had to find a babysitter for my daughter. It’s no wonder she became independent at an early age.

At age 6, Joshua was sitting at the breakfast table eating breakfast when he had his first seizure. He fell off his chair, his eyes rolled back, he made clicking sounds, his head turned to the left, and his body became limp. If you’ve never seen a seizure, it can be a terrifying experience. We now know that they are more frightening than dangerous. Josh was admitted to John Hopkins Hospital in Baltimore to be evaluated for the seizures. He slept in a crib with a net over the top to keep him in. Josh needed medication to sedate him for the EEG, but he had such a strong will they had to try the EEG three times. Finally, they wrapped him in a sheet and taped it down so he would lay still. In the EEG room, as soon as they put the wires on his head he sat right up in bed. I spoke to him and told him to lay down. They had given Joshua enough medicine to knock him out, but he still tried to walk in the crib, staggering as if he were drunk, but he finally slept.

Soon after this evaluation, he had a complete work-up at John Kennedy Institute in Baltimore due to developmental delays, hyperactivity, behavior problems, and autistic features. I was admitted along with him while he underwent 3 days of extensive testing. What an experience! Josh responded to some evaluations but could have cared less about the others. After all the testing, the news was devastating. Josh was diagnosed with profound mental retardation, a seizure disorder, and central hypotonia (poor muscle tone). No specific cause was given for these symptoms, but we were told that Josh’s low Apgar scores were an early clue about what was to come. We were also informed that Josh’s educational program was inappropriate. The evaluators promised to contact Josh’s school and to give us a list of local services closer to home, both of which they never completed.

I was never so devastated in all my life and I cried most of the way home. Gary and I knew then that we were "on our own" and would need to fight for Joshua the rest of our lives. I was a shy person but it didn’t take me long to learn to stand on my sap box and scream. You go forward one step, then back two, and then you repeat that first step again and again. You never stop fighting for that special son or daughter. And somewhere along the way, you realize that you cannot let this situation get you down. You will grow, get stronger, and be the winner as the result of your experiences. We all have that inner strength we need when pushed to the point of needing it, but few of us are ever given the opportunity to discover this. For our children, each little step forward means so much more, to us and to them, because it takes so much effort to achieve. Life is so much easier for the rest of us that we tend to take things for granted. I feel our special children make us appreciate life more fully than other ‘ordinary’ families. A sense of humor is also a great asset and your best defense against defeat. Laughter is truly the best medicine - when things get bad, think back to a funny incident that happened and go on from there.

Behavioral problems are among the most difficult aspects for us to accept about Joshua’s disability. As a young child, when frustrated he would run through the room screaming and crying and would only stop if held for five to ten minutes. He went to sleep with great difficulty and would often bang on the door or throw toys before settling down, only to awaken again between 3 and 5 a.m., not wanting to go back to sleep. He would pester and kick the dog and sometimes hit, shove, and pinch his sister or pull her hair when they were playing outside. Some of these behaviors slowed down a bit after he began having seizures, but behavior problems are an ongoing issue today. In the meantime, all of Joshua’s needs were causing our daughter to act out because she felt that her brother was getting all the attention. She would do anything (bad or good) to get a little of mom or dad’s undivided attention. Not to mention the fact that other family members felt we were not being strict enough with Josh. In our hearts, we knew that we were doing as much as humanly possible to be good parents, and much of Joshua’s negative behavior is beyond his or anyone’s control. Still, behavior is not like a crossed eye, a seizure, or a malformed leg, and it is hard for people to understand that this too is a symptom of Josh’s disability.

All along we were fighting his special education placement because we saw such little progress and felt they were doing nothing more than babysitting. We hired an attorney to help get Josh into a more appropriate program that would help him progress educationally. At age 9, we took him for a private evaluation which was the best he had ever had, in as much as it was like a game rather than a cognitive task and he was better able to participate. He was considered to have a "chronic brain syndrome" (another nonspecific term) as well as moderate to severe mental retardation. The evaluators didn’t feel that he was truly autistic because his relationships and social responsiveness are among his strong points.

At age 11, Josh was accepted for residential placement at an approved private school near Philadelphia. The state of Pennsylvania pays 60% and the school district pays 40% for the cost of his program. We knew that Josh needed this structured environment and programming, but it was by far the hardest thing we have ever had to do - to go home and leave our beloved son in the care of total strangers. Our daughter (age 8 ½) said, "You’re not really going to leave him there, are you?" The first weeks after placing Joshua seemed like an eternity. Time helps, as do frequent visits and having him home for vacations and holidays. But even now, it’s still not easy to bring him to school after summer vacation - we usually leave with a lump in our throats. I don’t expect everyone to understand or agree with our decision to place Josh in a residential school, but parents who have been in our situation know the dilemma we faced. And the progress we have seen in Jose tells us that we made the right choice. Some of the positive gains Josh has made since attending a residential school are as follows:

1. His sleeping and behavior problems have greatly lessened in response to the highly structured environment.
2. He has learned to feed himself.
3. He has made much progress with toilet training.
4. He can get undressed independently, although he still needs some help putting his clothes on.
5. He can often be very helpful and cooperative, when given the chance to do things himself, rather than having things done to him or for him.

One final positive note was the discovery, through the facility’s genetics service, that Joshua ad inverted duplication 15. Finally, instead of all the meaningless labels and jargon, we had a specific medical name and explanation for our son’s history. In the years since Josh’s diagnosis, I have been able to track down over a dozen other parents of children with inv dup(15), and I find that we have so much in common! Yes, there is a bond among all parents of children with special needs, but finding others whose children share Josh’s exact medical condition brings that bond one step further. I only hope that through IDEAS we can accomplish as much for our children as other support groups have done for theirs.

At right, Joshua at 24. He now lives in a small group home nearby and we can visit back and forth as much as we like. As usual, he always has to have something in his hands!

Child Of The Month Archive

Exceptional Parent Magazine Feature Article by Cindy Johnson	Alexis Marie Johnson
Child of the Month	Travis Ritter
Child of the Month	Lisa Poore
Child of the Month	Spencer Gray
Child of the Month	Lindsey Young
Child of the Month	Olivia Taylor
Special People Profile	Cheyenne Rain Jackson
Special People Profile	Naomi
Special People Profile	Bobby
Special People Profile	Kevin
Special People Profile	Olivia
Special People Profile	Megan
Special People Profile	Sarah
Special People Profile	Cheyenne D
Special People Profile	Joshua
Special People Profile	Robert
Special People Profile	Frederique
Special People Profile	Julia
Special People Profile	Ryan
Mount Prospect Times Article	Jake
Epilepsy Foundation Newsletter	Will
Exceptional Parent Magazine Story	Joshua D