It’s always been my personality to give it my all, or nothing at all. As a kid, I would throw myself into play with reckless abandon or shrink away into the background so as to avoid notice. People know me as being very shy and introverted, yet plenty of people describe me as bubbly and loud. As I became older, I would act in much the same way. When I was in college, I worked full time as well as went to school full time, often carrying about 21 credit hours a semester, which left me with no time to socialize. Again, it was all or nothing. By doing so, I always found that I got back what I put into things. Always, without fail, I would get back what I put into it. That is, until I became a mom.
I put my heart and soul into my pregnancy by eating right, resting when needed, listening to my doctor, buying the best baby stuff out there, you name it. During delivery, I gave it my all when told to push, to the point that I literally shot my son out before the doctor or nurses were even ready for him! I was determined that I was going to breast feed exclusively and worked and worked at getting him to latch on. But this time…this time I got nothing. I was confused and was sure that I was doing something wrong. I tried and tried again, consulted lactation specialists and experienced moms, to no avail. It was the bottle for him. I threw that aside and moved on. I realized that no one is perfect and even I get it wrong once in a while. I quit my job so I could be supermom and play all day and teach him new and exciting things like crawling, walking, talking…all the important milestones.
This is where I knew he was going to end up like me. He rolled over early, sat up early, and crawled early. This child started sleeping through the night at 7 weeks! Never mind the fact that he cried and screamed all day long from “colic,” but that’s another blog post! Like mom, it was all or nothing. Until we realized that he wasn’t talking. That’s when things really started to change. I was constantly in the doctor’s office asking questions. Most of the time I felt comfortable with the answers he gave, but when it came to speech, I wasn’t so sure that it was just a matter of, “Oh he’s a boy. Boys tend to be late talkers anyway.” No. No they aren’t. I spent so much time and energy trying to get him to talk, but got nothing in return. My thoughts drifted back to the days where I really struggled with getting him to latch on to nurse, but he couldn’t. I quickly pushed the thoughts away and moved on. I was determined to get this child to talk and find the help we needed to make that happen.
When more and more thoughts entered my mind that there might be something wrong, I threw myself into finding what that was, scouring the internet for any inkling. Once I put the pieces together (sorry for the God awful pun), I knew it was Autism. Determined to get more adequate services, I fought for a diagnosis. Again, I got nothing in return. This trend was really starting to piss me off. The first place said he was too young to diagnose at the age of 2. “Come back when he’s three and we’ll see what we can find out.” The next place gave us a Mixed Expressive-Receptive Language Disorder diagnosis. Nothing that was going to make the county give us more services. On to the next diagnostic facility! This time we got a slightly more useful diagnosis of Apraxia/Dyspraxia, but I still didn’t find the Holy Grail. That’s what I thought of an Autism diagnosis at that time. Autism was the Holy Grail only because I could get more speech, more OT, more developmental therapy…more of everything our son needed at this point. We started searching for that diagnosis when he was two and at the age of 6 (a mere 4 years later) someone finally handed me the Holy Grail. At this point, I realized that it really wasn’t the Holy Grail, but sadly it was a diagnosis that I needed to get adequate support for him at school. So even though I gave it my all and got what I wanted…it wasn’t what I wanted at all.
During all of this diagnosis searching, I dove head first into biomed. We did what seems to have been EVERYTHING! We did gluten free-casein free-soy free-dye free-everything free, cod liver oil, MB12 shots, LDN, Mito protocols, a very intensive Yasko protocol, HBOT, biofilm, you name it. We have what some call a “non-responder.” He does respond, but not in the leaps-and -bounds way that some of our kids respond. It usually takes 3-6 months after a protocol and looking over notes to see that there was or was not an improvement. That is not what this instant gratification girl wants. I want results and I want them yesterday! Never fear…I keep on keeping on.
Now with Autism in my personal life, it only made sense that it crept its way into my work life as well. Remember, I give it my all. So I found myself driving a school bus which then led me to driving a bus full of Autism Spectrum kids (my son included) out of district to the county’s Autism program. I damn near adopted each and every one of those kids. I became friends with their parents, offered advice on biomed stuff based on our experiences and became the local Autism resource. A few parents approached me about a support group and the next thing I knew, I was head first into scheduling meetings and events. I was so wrapped up in Autism, that I didn’t know anything else. Even after moving to a new state, I absorbed myself in Autism. Head first I dove into providing respite to a family in crisis. It’s been a year and a half since starting with them, but I’m still there, immersed in their world. Things are much better for them now and their lives are more stable. FINALLY! I’m getting something back! My son is closer to recovery, but still has a long way to go. That’s fine, I’ll take it! I’m finally able to say that I’m getting back from the world of Autism, albeit not nearly as much as I’ve put into it, but I’m getting a little back. I do have to say, I want my life back. I want my friends back. I want those carefree days back. But most of all, I want my boy back. With all I’ve put in, I deserve to get him back. 
~ Cupcake
* For more blogs by Cupcake, please read A Childhood Stolen and Stuck Between Two Worlds
I know how hard you work, and I know how dedicated you remain to give your family your all. Some of it has instant rewards while other parts of it makes you fall to your knees. I’m glad I get to be friends with the hard working, won’t-take-no-for-an-answer you and the delightful, cheery, fun you.
xoxo
~Mamacita
wow! some of that sounds exactly like our story. He is a sweetie: a blessing 🙂 and blessed to have you as his mom. i am the same: all or nothing.
Amen!!
What a gorgeous picture of the two of you. He looks just like you 🙂
You will get there.. You DO deserve it and so does your family.
You WILL get there Cupcake!
MUAH!
I appreciate you and your raw honesty! 3 of my children are on the Spectrum somehow; I have to tell you that the diagnosis was a battle that I gave up on. I like you began to notice things about my son, it was hard to miss. He was so withdrawn, didn’t care to be around other kids. Playing on a sports team was a nightmare for all my children, (but we were an all-american family and we just had to play sports -insert sarcasm.)girl 1 would have huge meltdowns, cry and throw herself on ground, son would completely check out. At home he would break down and cry, cry, cry if something of his wasn’t put right in place of where he wanted it and getting dressed was a nightmare..only certain clothes will do. I totally admit my ego was affected when my boy would only wear mismatched soccer shorts with one particular shirt.
There were many more signs, like you I am passionate and all or nothing kind of Mom, so I dove into research and how can I help my children. I did take them for diagnosis, but in the eyes of the healthcare system, if they are not failing what is the point of diagnosis…I heard well “she isn’t a grade behind”, excuse me if my daughter is smarter than your system, and you 🙂 “your son meets 5 out of the 7 criteria, but he is homeschooled and Autism is just a trend!” Ugg really?!!? “but here are social workshops and we will meet with him every other week for social work.” The entire process has been frustrating…but being the Mom that I am, I decided to dive into my childrens well-being. I decided to give up on the diagnosis, my energy could be more affective in helping them than spent going to Dr’s appt. and picking that battle. The label IMO is just that a label, I have gotten to the point now where I think it holds our children back. Yes it has a place, but when someone hears, Autism, they think “oh I’m so sorry” but the fact is our children are unique and gifted and sensitive little people…they have so much to contribute! I have them on a special diet and have dove into inspiring other families to seek out our inner, authentic children, by removing the things we can remove, making nutrition a priority and changing the environment that we can change for our kids. The world is missing out on their contribution when we look to categorize and label them. I hear label, I think “disability”, “disorder”….why because they don’t fit in a box? I know there are more families out there like ours, seeking info and not getting the help from “the system” my message is you can be the best support for your children and you don’t need the “system”…there is help out there! Thank you Cupcake for your help as well!
Choked Up Mom- you should be writing too. You both said it in a way that I couldn’t but it’s exactly right.
Sue, thank you so much for saying that. I struggle between sharing my voice and my knowledge, and protecting my son’s privacy. Because we feel he will be fully recovered, we are careful about sharing with many people his diagnosis. We don’t want it to hold him back in the future.
I feel my next step/purpose in my life is somehow related to all of this, but I have not figured out how yet. I know I have no interst in returning to my former life as a TV executive. Sometimes I wonder if I am meant to adopt a child on the spectrum and do all I can to help them as well. I feel if that is meant to be, it will somehow present itself. In the meantime, I just keep chugging along!
One more funny note. Today we were all in the car. I was singing along with the radio. My 5 year old, the same one we were told may never talk, decided enough was enough. “Mommy, PLEASE stop singing. No one likes it when you sing.” (This is a fair and accurate assessment of my singing skills.) The thing is, I think he will get away with telling me ANYTHING his whole life. I don’t know when my being offended will be a stronger reaction than my pride in him, but it’s not now. After he said this, I sat there beaming with pride! I’m convinced one day he’ll be very successful and supporting us all….and I’ll still be impressed over small things, like him answering the phone and saying “Hello.”
This really got to me. I live in a city that was quick to give my son a PDD-NOS diagnoses, but beyond that, we are a lot alike. People who haven’t lived this life, don’t know what it’s like. I control everything, except how much my kids progress….that is influenced by me, but not fully in my control.
We are free of : gluten, casein, eggs, soy, nuts, apples, bananas, tomatoes, canola and other unhealthy oils, food coloring, brown rice syrup, preservatives). I started homeschooling last year as a temporary solution for my never-evaluated son and it worked out so well that I am now homeschooling both of my boys. When people ask me how I do it all, I look them in the eye and tell them that fear keeps me going, that and the fact that what we are doing is working. I also like to throw in the fact that “experts” told me my one son might never talk, and suggested having him point to pictures instead. I though 2 1/2 was too soon to give up on my kid. They also were furious that we refused to consider autism schools, but instead kept him in a mainstream private school that was willing to kindly push him to participate like his classmates did. Now, only homeschooling or mainstream schools would be an appropriate placement for him. When our former pediatrician fought me on the diet and said the healthfood industry promoted it for gullible parents like me, I pointed out he went from 5 words only we could understand to 250 real words in 3 months! He said it was a shame I was giving credit to food instead of my son who must have finally decided to talk. (That was our last conversation!)
My sons are doing great now, but my one son is one cheese pizza away from being autistic….and the other would be skipping around him on his toes, acting out a TV show. This life is hard, but it much better than where we were 3 years ago!
Big hugs and congratulations to you for all you do for your son, and for all the parents that struggle on this path. And to the parents of newly diagnosed kids, I know your chest feels like it is going to be crushed by the love and fear you feel for your child. My husband and I still look back at that dark time in our liveswith wonder that we got to where we are today. But know, it can get better. Learn what you can from the experts, but read everything the “quacks” have to say, and trust your gut. Your kid is in there, you can help get them out. The first time my son spontaneously told me he loved me, well, ironically I have no words to describe how I felt!
You DO deserve it Cupcake ~ and it WILL happen xoxo
It’s so true that we really don’t get what we deserve with our ASD kids. I think that’s one of the biggest heartbreaks for me as a parent. It stinks to be reminded over and over again that life really isn’t all that fair, especially when it’s the suffering of our precious children that reminds us of this. Fortunately the autism epidemic is creating a whole generation of moms and dads who are fighters!