Nate was born in the summer of 2005. We were living in Phoenix at the time and let me tell you about the heat. My god, Jerry, the heat. It 120 degrees outside and I just wanted the dang baby out of me. Immediately. I was induced on my exact due date after a very uneventful pregnancy. Nathan Thomas entered the world a beautiful bouncing baby boy on August 24th. ....and that's all it took. We were hopelessly in love.
Nate grew and progressed typically, hitting every milestone along the way. Crawling- check! Babbling-check! Waving-check! Clapping-check! Walking-check! He even did fantastic with our move to Ohio when he was 10 months old.
After his one year check-up, where he received his MMR vaccination, Nate had a Grand Mal seizure. I don't know what was more painful at the time- feeling completely and utterly helpless as your child convulses violently in the backseat of your car..OR having medical professionals try and tell you he was having a febrile seizure (even though he had NOT had a fever) and it's perfectly normal.
The next year was a blur. The seizures had stopped but the other problems were mounting rapidly. He wouldn't hold eye contact any longer. He barely responded to his name. He stopped waving. He stopped clapping. He made zero sounds. Then at about 18 months old, the GI problems kicked in. He had diarrhea for THREE MONTHS. Our pediatrician ran what tests she knew, ruled everything out, and then calmly reassured us he had "toddler tummy". I almost laughed out loud in her face. wow. My baby is SICK. There is something MEDICALLY wrong with him and his gut. We knew it, yet nothing helped. By his 2 year well check appt it was clear as mud to everyone but me. Aaron and I couldn't even keep him in the doctor's office long enough for his appt. He was overly uncomfortable and screamed like he was on fire. After the conversation with our pediatrician, she suggested a hearing test and to come back in 6 months and "see how things go".
That time in Nate's life, from 18 months until right after he turned 2, was a clear line of demarcation in my life. The minute I wrapped my head around all of it, it would NEVER be the same. You can't go back. The closest thing I can compare it to that I have personally experienced in my life, is death. It is a grieving process, and still is, and always will be. It 's the death of what you THOUGHT life would be. I mean you DO rise above it, eventually I suppose...but that doesn't at all mean I don't swear everyday about why the hell this happened to MY BABY?? How did I not protect him?? ..and so on, and so on. You know better. We all do. ..but you still go back to the same dark place over and over again.
Nate was finally formally diagnosed(on paper) with severe Autism at the age of two. Thank goodness I already called and got the ball rolling without the help of my oblivious pediatrician. It really was just a formal diagnosis as we KNEW about a year before. I CAN tell you though how excruciating a formal diagnosis is. Sitting in a room,by yourself because nobody can handle your son except your husband, listening to psychologists and neurologists tell you things about your son that just rips you to shreds, word after word. I was told Nate was on the extremely severe end of the spectrum. I was told Nate would be in an institution as an adult.I just sat there, a first time mother, just trying to hold it together, sitting in a windowless room with a row of professionals telling me what my baby will never be.
The 3-4 years since have been a roller coaster of emotions. More downs than ups I must say, but occasionally we make it up a small hill. I went through another stage of grieving after Nate's diagnosis as well. When your world stops spinning, like mine did, you expect and assume that everyone will be there to pick you up. I mean, when tragedy strikes your family, it happens to your WHOLE family, right? Well, lesson learned. I am sure that does happen to someone, somewhere, but who are we kidding. Twice a Year Family stays Twice a Year Family, friends drop off the earth, and your bills start mounting. You have to listen to friends tell of Timmy's baseball championship game, the group family vacation with friends to Hilton Head, and how your relatives are on a cruise somewhere warm and tropical. Meanwhile you just want your baby's stomach to stop hurting and you are DESPERATE for answers and help. You try to suck it up and stop wondering when your family will jump in and help, but you just keep drowning further in debt for therapy after therapy, special equipment and books, and let's not forget about the special diet. In many ways it's not even the money. I mean money comes, money goes- it's my child. THAT is a no brainer. It really is needing physical HELP. I say this with HALF an ounce of understanding, but if you have never been the full time caretaker of a disabled child, YOU DO NOT GET IT. It's not that we need a sitter for "date night" so Aaron and I can grab dinner and a movie. I mean, that doesn't happen either, but that's not what I mean. We don't need a "night out". We need help. We need people that honestly care about our child to get to know him and be comfortable caring for him and helping him grow. Aaron and I have neglected ourselves for years- missed routine doctors appts, dentists, therapy appts for US, etc...you name it. Let's not even talk about all the school meetings and therapy trainings that really require BOTH of us to be there to learn and make crucial decisions for Nate. For once in my life I want someone to ask us, "How and when can I help?"....or "What meetings and such to do you have coming up? Please let me come stay for a week so you all can schedule appts and meetings during the weekdays- just let me know which week is most helpful to you. I would love to get into Nate's world and LEARN how to care for him." ha! A mom can dream.....
I am in a fortunate position now that Neve is in our life. My children are both gifts in so many ways, and Neve is no exception. I am now a parent of a disabled child, and a typical child. I now vaguely know why other parents don't get it. I know how you take EVERYTHING for granted that your child does naturally with barely so much as a nudge from you. I see how most parents of typical kids do nothing to foster the importance of understanding and accepting differences among peers. You will get sympathetic glances from other parents..but invite your Autistic kiddo to their house to play? ha!
I will repeat this-If you have never had a disabled or special needs child live with you that is completely dependant on you, you HAVE NO IDEA to any degree what it feels like. It is love that is completely selfless. It is a fire that burns in you to change this child's path and help them succeed. It is a job that pays in returns that a few and far between and are sometimes so hard to see you have to dig deep. Raising Neve is instantaneously gratifying. I am greeted every morning with hugs, kisses, and words of affection and love from her. I see her smiles and giggles all day long while exposing her to new experiences and adventures. I spend an hour with her showing her how to trap and shoot a soccer ball and she is already better than I am at it. A special needs child is not like that. You are a care taker and you are ALWAYS repeating the learning process and breaking it down to the finest details that it is absolutely exhausting. The smallest victories are celebrated to the moon because of how HARD you know the task was for your child. I love Nate more than it's possible to love another person, I think, but if you have never had your child hug you and say those simple words, "I love you", your heart aches for it.
It's strange..I have always been super honest about my feelings for my kids. All mothers love their children, obviously, but I am honest enough to say it is different love. It really is. Neve is this AMAZING little person that has so much to say as her little brain (and mouth) is constantly running. I feel like I am learning so much about WHO she is everyday and I just want to learn more. I know that girl is gonna move mountains, I really do. I love every square inch of her and I am so proud that she is my daughter.
The day Nate was born, I felt like my heart left my body and grew legs. Even before "Autism" took over over lives, I felt this insane connection to him. I can't explain it. Maybe it's because he is my first born, maybe it's because he can't speak for himself, maybe it's because I feel so protective of him it's insane. Who knows. I just know that I spend all day telling everyone that I just don't understand him, yet at the same time I understand him PERFECTLY.
.........anyway, this is my blog. The good, the bad, and the stuff I probably shouldn't say about living in Autismville.
~Meg
