I have watched and enjoyed your show since the very first episode I found. Often times I will sit down with my family and watch your family together while we curled up on the couch, enjoying the laughter and the love we witness. I believe you are making the very best of a very difficult situation and I think your family dynamic is beautiful.
With any person (or family) that is thrust into the national spotlight, there will always be drama. I have caught the tabloid-fodder and the “news” stories about your family. I have seen blogs intent on ripping apart your family structure, but like everything else, you have to pick your battles carefully.
I don’t know your family enough to make any sort of judgment calls. The general populace only views your family on an hourly basis once a week. I have zero medical backgrounds and very little knowledge of your family’s health practices other than what has been offered on the TLC network. I am writing to you because my son and your son have such similar mannerisms and because the moment I began to understand his disorder, his life and my own became increasingly more fun and manageable. I am writing this simply from my heart, in no way am I incriminating, pointing fingers, or insisting that I know better. Your family is beautiful, and quite possibly this isn’t the case, but as a mother of a young boy with SID, I feel I must let you know the impact these small changes could have on your family.
First, allow me a little room to tell you about my family. My eldest son is 7 years old, He is brilliant and funny. He is incredibly athletic and the kid can do just about anything he is interested in doing. He is the typical firstborn child and when I found out I was pregnant with a second baby, I prayed they would be different. While my first is a go-getter in every sense of the word, my second child turned out much different.
When my second boy came along, I knew he was something special. He is kind and sweet, he is quiet and subdued. He is a brilliant artist and even at five years old he shows signs of being quite a writer. I suppose that every mother feels that way about her children and I brushed it aside for many years as the typical mommy love I wanted to feel towards the little monsters that ransacked my house.
My last and unexpected son is even different still. He is a firecracker hell bent on destroying the world by screaming at it. He can make even the stone-faced soldier giggle with glee, but drop a grown man to his knees with a cleverly placed slap. He is strong and soberingly cynical and at 20 months old, he has the heart of a lion.
My children are so different and so uniquely themselves that it’s hard to even write out their separate personalities into words. But I am not here to talk to you about my children altogether, I am here to tell you about my middle son, Jakob.
Jakob is not only a brilliant little boy with the biggest heart of anyone I have ever known, He is also a child with something called Sensory Integration Disorder. This is a long name for a fairly simple issue. Jakob feels things differently than most people.
Your beautiful children are obviously healthy. You eat better than I could dream of feeding my children, and your activity level is outstanding. The only reason I am writing this to you is because I feel that your decision to be so active in the public eye, allows you to understand when people are being sincere.
With that said, Let me tell you a little more about Jakob and his senses.
Jakob developed differently than the children around him. He lagged behind in things like his simple motor skills and speech development. He was lazy, choosing to play while laying on the floor instead of running the house like the other boys. I feared the worst and had him tested for Autism at a very early age. Jakob is amazing, his eyes speak the world to me. He is so expressive and sweet that even his gestures seem rehearsed and plotted. He is nothing if not completely genuine.
With all of these great qualities, Jakob has some pretty interesting quirks. His temperament for change is minimal, he doesn’t handle unpredictable outcomes well, and he absolutely thrives on schedules. Jakob can’t eat food that he isn’t prepared to eat, meaning that any change in his diet is generally exhausting for him. He spent nearly two years insisting on nothing but cold macaroni and cheese for dinner, a completely appalling diet that we all fought hard to break him of. Temperature is incredibly important for him, the bath can’t be too hot, his food has to be cool, and he gets overheated or too cold very easily.
Like I said before, Jakob feels different than most people. He feels things intensely which in some cases can be a real drag, like eating at restaurants and staying away from home. But feeling things differently has also allowed him to see the world around him differently as well. He is attuned to his surroundings so well that the slightest variation can become quite distressing for him.
For instance, last week we took him to the ButterFly Pavillion in Denver, he enjoyed it so much and sat quietly watching the insects flutter around him. Jakob is healthy and strong and very independent. Until a very large butterfly landed on him he was very much enjoying himself. My young son was terrified and what followed can only be contributed to his senses, the way he feels things so differently than the rest of us. Sudden panic kicked in, and because his dad wasn’t aware that it was a sensory issue, he escorted the crying child to the parking lot outside where his frantic pleas turned back to quiet and normal chit chat. He got overwhelmed and needed a place all his own to cool off.
I am telling this to you for one purpose. I have witnessed these traits in one of your children. Your young son is so similar to mine, that I couldn’t hold my tongue any longer. Your son may not have sensory integration disorder, though it is more common than people realize. It’s plausible that my concern is just a feeble attempt to find more of a connection to your great family, but I just couldn’t let another family struggle as mine had.
Jakob’s diagnoses was met with a lot of tears. I didn’t understand the disorder and feared that he wouldn’t be able to manage his world enough to be comfortable in it. His biological father and I were long divorced by the time we had him diagnosed, and I had hoped that this one thing would be what could make a divided family work together once again. We shared tips and ideas on what to do, and with the invaluable help of Jakob’s Aunt, we learned the truth of this disorder.The Sensory Integration Disorder isn’t a life sentence, but a lesson in love.
While the initial shock of having your child diagnosed with a life-long malady was terrible, nothing was more productive than that missing piece of information. What once seemed to be odd quirks of an incessantly picky child was in actuality the premeditated control of his environment that only he could understand. I finally understood why he squealed like a banshee when the bathwater wasn’t even hot, why his diet was so infuriatingly simple, and why his clothes were always mysteriously disappearing. The puzzle piece that was missing was my empathy.
My child is different, and I love that about him. His ability to feel is so amplified that I wish I had the gifts that he has. He can tell when you are hurting before you can, he loves with an open bleeding heart put out on his sleeve and he is strong in his convictions. The best thing that ever happened to my family was learning this diagnoses. Jakob is not sick, and he isn’t angry. Jakob was uncomfortable for a long time, in his own skin, in his clothes, in his family. He was uncomfortable because we did not understand the way that he feels things, and now that we do, tiny changes made just for him has made the family run like a well-oiled machine.
I cannot judge your family on any level. It is not my place to say what you are doing is wrong or right. It isn’t my concern so far as how you raise your children. The one thing I wish for you is the success of your adorable kiddos and the happiness of your family. My family would still be struggling, still frustrated at the little uncontrollable quirks we just didn’t understand if we didn’t make the move to find out why.
You needn’t reply to me, I know I am just a random stranger who enjoys your family through the modern marvel of reality television. I know that my unsolicited opinion on your children is just that, unsolicited and quite possibly unwarranted. However, after many nights watching your family and many friends telling me that Collin was so much like Jakob they couldn’t help but love him best. I enjoy your show very much, and I do hope that the public lays off of fueling the fire of celebrity drama. I wish your family the best.
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