Home School Curriculum Experts

My special boy. We all feel that way about our sons, I know. But I have another reason for calling my second son “my special boy.” When he was born, he looked absolutely perfect – big shoulders, dark blue eyes, little balled-up fists, little round tummy. He was our second child and second son, and we were very happy. But he was not happy. He cried up to 15 hours a day inconsolably. Doctors said he was colicky, then that he was lactose-intolerant, and he *was* both of those things. When he stopped crying all the time at about eight months of age, he was a very happy and serene baby, and we thought the worst was behind us. Sure, he sat up late, crawled late, and wasn’t talking or walking. But his doctor said that all kids develop at different rates, so we weren’t worried. At first. But then weeks went into months, and when at fifteen months of age he was still not talking at all, didn’t seem to understand anything we said, and was making no moves toward walking, that sick, aching feeling in my mama-gut just would not go away. I self-referred to early intervention services, where he was indeed diagnosed with global developmental delay and started occupational, physical, and speech therapy. He made some progress, and at the age of 22 months he finally started walking. But he had other issues. He was very aggressive, hitting others, throwing things, injuring himself, as well as odd behaviors – hand-flapping, rocking, slinging his head. And he made no eye-contact and did not turn or respond when you said his name. He qualified and transitioned to public developmental preschool, after having been asked to leave his “typical” preschool at the age of two due to complaints from the other parents over his behavior. As a mom who was very pro-homeschooling, it was difficult to send my baby to a public preschool, but it was the only was he could receive the services and therapies he needed at no cost. And we were very pleased. His teacher, who was as round as she was tall and had the sweetest spirit you can imagine, wrapped her soft arms around him that first day and called him her baby. He was there two years, and received the greatest care and love, but he struggled daily. Many times a day his meltdowns put others and himself in danger. During that time our entire family was in chaos. Living with a child who has special needs is one thing, but living with one who has constant uncontrollable behavior and siblings who are getting hurt is a whole new level of hell. Church, social functions, family gatherings, the grocery store – those things were out of the question for us to do normally. During that time we received a lot of criticism, mostly from strangers but even from church family - they thought we just were not handling his discipline correctly. You see, he looks perfectly normal – blond hair, green eyes, and the most handsome little boy you will ever see. The comments and treatment we received were more than upsetting – they were devastating to a mama and daddy who did not know what was wrong and were trying desperately just to survive each day.
We had tried since he was eighteen months old to get a diagnosis and some answers as to what was wrong, so that we could get some help. We pursued every avenue imaginable (and I have boxes and boxes of testing and paperwork to prove it.) No one had an answer. We have a teaching hospital in our area which is world-renowned for their research and treatment of developmental delays and mental disorders, and they could come up with no better answer than a diagnosis of developmental delay. They could not explain his behavior. If you had ever told us that we would have a child on psychiatric medicines at the age of five, we would have vehemently protested. But we were at the end of ourselves. And so began the long road of medication trials. We found one or two that helped somewhat, but none that made any measurable difference. At the age of six he was diagnosed with autism and ADHD, and we felt that we could finally put a label on what he had and have somewhere to hang our hat. I researched endlessly and we tried many treatments and therapies.
In the past four years, things have ranged from extremely bad to moderately bad, and back. We have seen more doctors than I can name, tried more medications than the doctors at the teaching hospital have ever seen a child try for a behavior disorder, spent a devastating twelve days in a children’s psychiatric hospital, and still we deal daily with the uncertainty of how each day will go. Just a month ago we finally got in to see a doctor whose waiting list we had been on for two years, and she did an extremely thorough work-up, then told us that she does not think that he has autism – she thinks it may be genetic. She referred us to an autism research project and ordered all kinds of genetic testing, and their conclusion was that he does not have autism. In addition, nothing came up on the genetic tests so, other than confirming a cognitive impairment (which we had suspected over the past year), we are back to square one. They admitted that his is a “complex case” (really?) and referred us for intensive behavioral therapy which we are in the process of figuring out how to pay for.
And yet I am at peace. Before you label me hyper-spiritual or just ignorant or oblivious, let me hasten to say that the path to peace has been a long and harshly painful one. I have been through many years of depression, anger with God, and trauma in my marriage and family. No one except my husband knows what it has been like to live our life of the last ten years, and knowing that we could never possibly make someone understand puts us on an island that is oftentimes a very lonely place. My husband has dealt very differently with our difficulty, and is now in a place with it that I have thankfully already passed through. This difference in where we are at with it has also been very painful and stressful in our relationship. But God has changed me. I don’t like that I had and still have to go through it, I don’t know why He had to allow it, and I will never understand why he does not make it easier, but I no longer question it, and I am no longer angry at God. I have slowly over the past two years been making my way back to an intimate relationship with Him. I never left Him, and He certainly never left me, but for a long time after the pain and anger started to subside, I was very wary of God and was okay with me being in my corner and Him in His. I have hope that I am well on my way to recovery.
And so, my son today is who God has made him to be. As I said, he is a beautiful boy, and when he is not in his bad place, he is very affectionate and loving and asks me “Are you my baby, Mommy?” For that I am very grateful. I love him overwhelmingly, yet I hate what his disability does to him and to our family. But it no longer defines my life or my other children’s lives (although my husband could not say the same for himself right now). We are happy, we have fun, we enjoy many things - all while struggling and adjusting and suffering. I would never have chosen for my children to have to grow up with the pain and suffering that they live with. But I see that God can use that suffering, perhaps far greater than He could have used an easy childhood, to develop their character and bring glory to His kingdom. I have accepted that in this life I “see through a glass darkly.” But I hold on to the fact that I will one day see “face-to-face” and no longer know only in part, but know fully, as I am fully known. And so, holding onto that verse in Corinthians 13, I live in hope.