Our thoughts and prayers are with all those in Boston who were impacted by today's tragic event. There were a number of people running the Boston Marathon who were using the race to promote awareness of autism. We understand that our friends from Autism Speaks who were running are all safe, for that we are grateful. For the others running for autism as well as all involved in the race, our thoughts and prayers are with you.
What happened yesterday in Boston once again shows what a sometimes senseless world we live in. And yet, we must carry on. Because if we give in to the darkness, the adversary will certainly have won. In the face of great sorrow and challenges we must be courageous and have faith that there’s light at the end of the tunnel and that good will always prevail.
I found this today on Facebook, a tribute to all the helpers that have certainly rallied in Boston. And a great reminder that we are always surrounded by wonderful helpers in life.
My 2008 journal is also a tribute to the helpers that blessed our life way back when Ben started on his autism journey…
Angelique’s Birth
May 1997
May 1997
Anyway, she is still tiny, I call her T sometimes even now. She is smart as a whip and very talkative, she is a great reader and a great example to her brother. I have always thought Ben is as verbal as he is now because of Lixie –Ben called her that because he couldn’t say her long name. He even learned to babble when she did.
Angelique’s pregnancy hadn’t been difficult per se, but already strange symptoms were rearing their ugly heads for me, tingling legs and feet, migraines and such. The last month of the pregnancy I could barely walk. I was so glad when she was born, six days late but who’s counting?
But where was my “special child”, the one Heavenly Father promised me He would send me? I could never forget that night not so long ago in my blue Provence. Surely Angelique was not it, my “special child” still needed to come, a child I was picturing with Down Syndrome. My mom has a cousin with Down Syndrome so it is in the family, it made sense to me.
So here was the angel child, my Angelique, my twiddle bug, and I looked at her and no, it wasn’t her. Who and when then? I remember a particular prayer to Father, asking Him when to have the next baby so He could send the “special child”. I was so discouraged, because frankly I was exhausted. And by now I know I was already getting sick… intuition. I will forever remember the answer : “Be still Daughter, you already have your “special child”, take care of your family.” It was clear, but I was confused, to me all my children looked normal. Where was my “special” one?
Don’t get me wrong, they all are “special”. I love them all with every ounce of my being, but Father had told me one of them would be different, so which one? Which one would defy the norms? I was just about to really find out and boy, I would not be disappointed as far as how much he would defy those norms!
“Tabula Rasa”
May 1997 to November 1997
I thought he was being jealous. I thought that the birth of his little sister was being particularly hard on him. I looked back on the day when Camille, standing on her tippy toes had peeked in his little bassinet and in no uncertain terms, if very unintelligible ones since she was only seventeen months, let me know she was very unhappy that this baby Ben was still here with us.
“Siblings do get jealous”, I kept telling myself... Maybe he’s doing that for attention? But day after day, when my little boy screamed and screamed and couldn’t be appeased, when he was more difficult to deal with than the newborn, a new certainty dawned on me: this wasn’t jealousy.
I took him to the pediatrician and voiced my concerns. I told them he was losing ground in his development. This was about six months after the first symptoms had started to develop. Ben had stopped making eye contact, cried a lot, started to scream in the middle of the night and it was more difficult to calm him down. He was crabbier than ever, refused to feed himself or do anything for himself as a matter of fact...
I was told that boys develop slower than girls and that I shouldn’t compare him with Camille as she surely was exceptional. Well I knew that... But what about his loss of skills? I should have insisted, but went home feeling depressed and defeated. Their “knowledge” was more than my mothering instinct, certainly... That is never the truth!
My two and a half year old was a sad sight indeed, crying all the time, eating only restricted foods: hot dogs, Cheerios, and spaghetti, drinking whole milk by the gallon. Camie went to preschool and was happy there, giving her a break from home and the chaos reigning there. Angelique kept growing as well as she could, our dainty little thing.
I had a great friend in the church then, Jennifer Harper. She truly helped a lot when things were so rough. Her children Hannah and John were Camie’s and Angelique’s ages and we got them together a lot to play. Then we could talk and buoy each other up. It meant a lot to have someone to talk to when the going got so tough with Ben and I didn’t know why my child did the things he did.
I finally took him back one more time to the clinic and told the pediatrician this time that there was something wrong with Ben. It was a different doctor that day and she told me to look for “Early Intervention Services”, that they could evaluate my son and tell me if indeed he was behind in his development or not. She left without another word and not even giving me the number for those services.
I was determined to find them. I took my phonebook –this was 1997 before we had the Internet in every home– and started hunting. The Lord guided me and I happened upon the right number. My joy was boundless... (Do you remember how hard it was before the Internet to find numbers needed?) I made the call and they told me that they would send a caseworker to my home to start the process. I was astounded. What a blessing!
I knew right then that it was the reason why we had been sent to Pennsylvania. And I would not even fully realize the magnitude of the services available to special families in Pennsylvania until much later. But I felt the Lord’s love and His guidance. I knew He knew us, loved us and He had a plan for us. Jeremiah 7: 23 reads; “ But this thing commanded I them, saying: Obey my voice, and I will be your God, and ye shall be my people: and walk ye in all the ways that I have commanded you, that it may be well unto you.” I wanted to obey His voice and follow His plan, whatever that was.
Sending us to Pennsylvania was part of that plan. A poor family such as ours, starting out in life, with little kids spaced so close apart couldn’t have hoped for a better place to be when Ben needed be taken care of. Pennsylvania is the only state of the Union that considers disabled children as “individuals” and will not look at the parents’ income in calculating the level of help granted the family.
Benjamin was evaluated by a nurse, a speech therapist, an occupational therapist and a social worker who came to our home. He was found to be severely behind in his self-help skills, speech, fine and gross motor skills, adaptive and cognitive skills with aggressive behaviors, short attention span and poor eye contact, thus qualifying him for special education preschool and speech and occupational therapy sessions at home. In layman terms it meant that my little boy couldn’t do much for himself, couldn’t talk, had trouble holding a pencil or marker to color things, couldn’t ride a tricycle very well or throw a ball to me, couldn’t adapt to change at all or resisted it, threw lots of tantrums (and occasionally things too), couldn’t concentrate very well on anything for any period of time and couldn’t look at anyone in the eye.
At first I was surprised by this: occupational therapy for children? Why, yes! His job was to play and my little boy didn’t know how! Toys were particularly frustrating to him, he would pick them up, look at them quizzically and if he couldn’t figure out what they were or what they were for, would hurl them across the room, a very dangerous practice! He only liked to throw his little basketball in his play hoop set, over and over again. The occupational therapist used that as a reward.
I found myself both happy and disappointed with the outcome of the initial evaluation. That was it? Couldn’t they tell me more? After a particularly difficult occupational therapy session, the therapist told me I needed to make an appointment with a behavioral pediatrician. She said the only one at the time in Allentown was Dr. Karen Senft and her waiting list was almost a year long.
I gasped, “What? We would have to wait that long to figure out what was really the matter with Ben?” Her face told me the tale, she probably heard that all day from other families she worked with. I made the appointment, it would indeed be almost a year later, in October 1998 that we got to see Dr. Senft.
In the meantime, Ben went to preschool where, from the first day, he terrorized a seasoned and veteran special ed speech teacher who thought she had seen it all. I have to explain. I first went by myself to introduce Ben and his behaviors, she told me that she indeed “seen it all” and to bring him in the next day for an evaluation, which I did.
Ben was so overwhelmed by the whole experience of just walking into the school building that he starting acting up a bit. I thought, “Well, it isn’t starting well, I don’t think she’ll be able to evaluate anything”. The teacher didn’t agree with me so she proceeded with the program. Bad choice. Ben started screeching in earnest and hid under her desk not to get out until the end of class. That was his first day of preschool. I cried.
A Very Sad Little Boy
November 1997
November 1997
What a pathetic contrast my poor Ben was turning out to be with my happy and bright Camille who taught herself to read when she was three. I know you are not supposed to compare your children, but whatever possessed Ben? Couldn’t it relent and let go of its deathly grip? Why my sweet little child, my angel of peace?
Ben could have the most beautiful smile when he was happy and at peace and a laugh so pure it took my breath away when it rang through the house... Those times when it did, those times when his cry did not wring my heart out of my chest... Those were few times, but they came.
Ben had lost all his words, couldn’t point, whined so much. He enjoyed repeating the same actions over and over again, lining up his toys, looking at the spinning wheels of his toy cars, scrutinizing the same books over and over again.
At two and a half, his vocabulary was almost non existent. I think he could say Mom and Dad, but he never did. I despaired to hear him say those words. I told him I loved him all the time, never thinking he would ever reciprocate. I had to rock him to sleep more than the new baby. Still rocking, always rocking, swaddled in an afghan now since he had long ago grown out of baby blankets... I rocked Ben and the “new” baby waited her turn patiently, so patiently that she fell asleep on her own.
That poor new baby! Angelique grew up in a doctor’s waiting room, waiting for Ben’s therapy sessions to be over or for EEG’s to be completed or whatever else Ben needed. It doesn’t sound too bad when a baby is in a car seat, try really growing up that way, try ten years of it. Angelique is surprisingly well adjusted but she has missed a lot of fun in her young years, I surmise.
I hope that both Camille and Angelique will learn something from their brother, now and years from now. If what I am writing accomplishes nothing else, I hope that they see how hard it was for me and their father to do the right thing for everybody in the family, not just for Ben.
I hope that they will understand that if it seemed that sometimes, or perhaps often, we chose Ben’s well-being over theirs, it was because really, in the long run, doing otherwise would have made us all so much more miserable than choosing our own selfish pleasure or even whatever other righteous desire we might have had at the time.
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