The phrase “hidden places of my mind” has really changed meaning for me recently. As many of you know, I love to talk. I can talk about shopping, politics, the Bible and Christianity, hunting/fishing, or well, anything really. The scope of my interests is pretty wide. (I even have recently delved into the world of video gaming…) But, there are things I don’t talk a whole lot about. At least not recently.
Many who have taken the time to get to know me (and some who haven’t) know my kids are one of the biggest things in my life. I live, eat, sleep, and breath my kids. (although sometimes a break is in order) You know I talk non stop about them. I do admit sometimes it isn’t as easy at times than others-but there are things I don’t talk about. I know, I know, I shouldn’t keep things to myself. And yes, there are those of you who do know a little of what is happening. But the key word here is, little.
It is so much easier for me to keep it to myself. I don’t have to worry about what others are thinking; because sadly, I have already gotten the “I’m so sorry” response-which makes it feel worse because pity doesn’t really feel that good. I have gotten the-“well what did you do to him response”, and anyone who knows the facts of this situation or any like it know, I didn’t do anything to cause this-it just happened. I have even gotten the silent treatment, and others who acted like my son was a problem child and cause to be rude and mean to him and myself.
I have been so hidden in my own world that many don’t even have a clue what is going on. But I can’t afford to be silent anymore. My son is at stake. His relationships, his treatment, and his life. If I remain silent, I may never hear the words “I love you” come from his lips. I may never hear more than the buzz of him playing, his screams or the grunts of frustration.
E-man (use of nickname due to public forum) has been going through a lot. Actually, he has been going through a lot for quite a while. I have been noticing things, a little at a time since he was about a year and a half. Not knowing if it was anything, I just let it go for a couple of months. I did take the time to mention my concerns to his pediatrician, but at his recommendation, I waited until his second birthday to say anything.
At two, having no idea what my options were or where to turn, I talked to his doctor once again. At the time, it was mostly emotional. He screamed at anything. He was easy to upset, and still hadn’t talked at all. It has been honestly been a fight since. At that time, because it was pretty difficult to say what level he was at due to his lack of speech, it was written off as either an inability to hear, or he was a slow learner.
I left that appointment, unsatisfied and extremely skeptical that he was just a “slow learner” or developing “at his own pace.” I made calls. I called people I knew had gone through this, I called agencies, schools, other doctors. (not that other docs could do much…) I even called my sons Pediatrician over, and over, and over again. Although I am almost ashamed to admit this, I even made E-man the topic of discussion at my other kids’ appointments. (they were healthy-I promise! 😉 )
After a year of asking over and over again, and coping, fighting, comforting, and trying to understand my consistently angry now three year old, I HAD to do something. At his next wellness visit, I made a point to once again say something to his pediatrician. After about a ten minute exchange (after he turned me down to refer him for testing once again) he finally agreed to write up a referral to have his development tested to see where he was.
Let me point out right now, this entire year I went without knowing I had the right to get him tested any time I wanted to without a referral from a doctor or going through the school system. Though, once he was three, it definitely moved much faster than I had anticipated. What we found was actually a surprise.
Sure, I knew my son had delays, but I thought a few months of therapy, and he’d be good. Right? Well, I was WRONG. His testing went so terribly, the therapists who ran his tests avoided even placing his numbers in the paperwork out of fear it would make him look worse than his potential. (because, we all at least agree he has TONS of that!) He showed between 10-24 months behind in both his OT and Speech evaluations, and sadly, the people who make the final decisions on his therapies and school recommendations decided it was best to tell me it was one of the worst, if not the worst case of delay they have seen in a long time.
So, after much deliberation and weighing pros and cons, we sent our precious baby to preschool where he not only does class with his peers, but has an hour of OT a week, two hours of speech, and at the start of the summer session, he will be doing an hour of PT on top of it all. Life as we know it, is no longer “normal.”
Let me explain, with the tantrums, grunting, lack of speaking (he spoke his first real words at about three) and mood swings, life has not been what others consider “normal” in a long time. To me, my kids, my husband, and our closest family (grandparents) this is normal. We live each day with these things and our definition of normal, has been forever altered to mean something other than what others would necessarily consider “normal.” But even this, has changed.
We get up every day at quarter to seven and guess at what time his bus is going to show up. I try to make sure he gets a snack or small breakfast before school and wave him off as he goes to school. He gets home at 12:30 each day, ready to be home, but still longing for school. We have lunch, and then the daily fight begins. We don’t have nap time, per say. I would love if the kids napped, but I have resigned to quiet time instead. Even then, it’s screams for more food or because I changed the tv channel (when I would prefer he played quietly in his room during that time), or just being overall, quite touchy.
I can’t hold him anymore. He is very affectionate, but he has to approach me or it is an immediate scream fest. He has started to talk some, but only at home and sometimes with the grandparents, but he has never talked in school outside of one time when he asked another child to blow bubbles and stomped on them excitedly. He has needs I don’t even understand and there are things he has yet to learn before kindergarten that I don’t even know if he will learn, or if he’ll even be talking enough by then to effectively participate. Potty training has been a two year process almost at this point. My finest moment was this past week when he told me he had to go while we were out and finally didn’t scream ecstatically because he was so scared of the “big potty”.
Then there are days when I see the little boy inside of him sprouting-but incapable of coming out. He still doesn’t say much, but he plays with his siblings, snuggles, and at least points to what he wants and smiles more. Those are the good days-I can see a glimpse of who could become in the future. Him, too young to dream for himself, unknowingly allows me to do all his dreaming for him for now.
We just had a CPSE meeting for him last week. I haven’t said anything about it to anyone, except he gets to go to summer school to continue therapy and play with his new friends. (those that will be there) They expect another full year of the most intensive therapy they can get him and though they don’t know the full story, I keep getting asked why they didn’t see him sooner. If only they knew.
They still recommend an eye test-we are working on that. But they also recommend he get officially tested for Autism. Although they and I both wish differently, all evidence is pointing towards Autism. This in itself is another fight. I have already been turned down for the referral for the Neurological testing he needs twice-and I can see possibly having to switch doctors just to get the referral we need for insurance to cover it. His testing shows him very likely autistic, falling in the bottom 5% of all kids tested, though also showing much promise to be up there with those they test as “normal”. He needs orthodics for flat feet and we hope that as we push for that referral we can get that neuro referral as well. Our fight is not over. We don’t want to fight, but for our E-man, we will fight as hard as we need to get him whatever he needs.
That is where The Puzzling Piece comes in. In E-man’s speech therapy, they have been using the Ipad. They also have been using it during the breakfast part of the day for him to say “more” and a few other words. As much as it is helping him communicate in school, we do not have the money to afford an Ipad for him to use at home so that he can use the same technology there to communicate with us.
The Puzzling Piece has been kind enough to start an Ipad challenge a few years ago to help families who could not necessarily afford an Ipad for their child get one for absolutely free. All we have to do is sell 60 pieces of The Puzzling Piece jewelry (found in the picture above) and as soon as the last piece is sold they will purchase and send E-man an Ipad. The apps and technology offered by the Ipad makes this an non-expendable tool for anyone to use with a child with delays or disabilities.
What I am asking is for five or six friends to share our story with their friends and find five or six people willing to buy one or two pieces of jewelry. The faster we can sell the 60 pieces, the sooner E-man can get the technology he needs to communicate with us better and be the happy, cuddly little boy he is on days when he is “connecting” better.
I am also asking that if you read this post and feel led to help, please, please, please go to:
http://thepuzzlingpiece.com and click on products then follow the tab to the “Ipad Challenge” jewelry. Check it out and get something that speaks to you and when you choose the piece (s) just enter my name (Sarah Samson) in the Challengers box so they know who to give credit to. The money they make goes to Autism Awareness Non Profit organizations and as soon as 60 pieces are sold they immediately purchase the Ipad and send it straight to E-man. For ease of use, I will put step by step directions below.
How to order online:
Go to www.thepuzzlingpiece.com.
Click on products
Click on iPad challenge pieces
Click on the piece you would like
Pick a drop down box, no extra cost.
Then add the challenger’s first and last name in the challenger box.
Click another photo if you would like more than one piece.
Please, Help us help our son reach his fullest potential and live the fullest life possible. The first step we can take (without referrals/insurance) is to get him this Ipad to help him communicate with us.
We, and E-man both thank you in advance for all your help!