My bestie suggested I write a book documenting the emotions and struggles in my life. That seems like a lot of work, so instead I decided on a blog. I don't know that I'll ever tell anyone about this little secret, but I do think sharing all of this will be therapeutic.
Let's start with my blog title, I wanted something to symbolize the insane roller coaster life has become for our family. I decided I needed a cup of coffee before embarking on this blog. There were, of course, grounds in my coffee, which instantly made me think of Carly Simon. Only as a child, I thought she was saying "browns in my coffee", which made it seem less tragic. It seemed fitting.
Introductions, shall we? I'm Mommy, my husband of almost 6 years, is, of course, Daddy, our two littles are E and Mr N; 4 and 2, respectively. E's a delightful and very intelligent young lady, who is very passionate about princesses, gardening and sticks. Mr N is our little cuddle bug who loves playing outside, blowing bubbles, and sticks. Thankfully we live in an area with a high stick population, the kids use them for various imaginative play and we go through several a day.
Mr N is really the motivation for my bloggingness. He was recently diagnosed with....dun dun dun...autism. Isn't it typically some catastrophic event in your life that motivates documentation of daily struggles?
I guess I should start from the very beginning, Mr N was born via c-section, Mommy had a very rough recovery requiring multiple visits back due to complications from the surgery. He was breech and refused to come out the old fashion way. He developed normally until about 9 months, what I thought was just normal separation anxiety became the beginning of some very concerning behavior. Mr N had been such a happy, easy going little guy, he'd let anyone hold him, was quick with a smile, a coo, and normal babbling. His speech continued to progress for several months, I wish I could remember precisely when more than the normal worrying began. At 9 months it was like a switch socially, he wouldn't let anyone hold him at all ever, except Mommy & Daddy. By his 15 month appointment his speech was a big enough concern that we voiced our concerns to his pediatrician and he was evaluated for speech therapy. At that time, his receptive speech was in the 16-18 month category, and expressive in the 12-15 month. He didn't qualify for any services due to being considered "advanced". As he got older he stopped eating normally, started mouthing velcro, carpet, chairs, things that really concerned us. At 23 months, he had diarrhea for several days, it'd go away and come back within a day, this went on for over a week so I took him to the on-call pediatrician and voiced all of my concerns regarding his love for velcro, his lack of speech, his lack of eating, and his drinking insane amounts of milk. She was less than helpful.
All through his early development I would express my concerns and discuss his delays, with my mom, with Daddy, on parenting boards, with friends, really with anyone who would listen. So many people brushed them aside, or tried to explain them away. I can't tell you how many times I heard "there is nothing wrong with him, stop worrying" or "I know a little boy that didn't talk until he was 3 and he started speaking in full sentences". Every parent of a child with autism has heard these same assurances. It even took several months before Daddy admitted that Mr N's behavior was concerning.
By the time he was 24 months, it was very clear that something was just not right. I took Mr N to his 2 year check up and we talked about his speech which had regressed so much, it really worried me, a lot. His social skills were so far off, but didn't know how to express that. Then the love for velcro, milk and lack of eating. During his appointment, I only mentioned the speech at first and the milk. She assured me that he would eat when he was hungry and not worry about his not eating. Then I brought up the velcro, the social awkwardness and she watched him for a few minutes, he was having a full meltdown, the dr's office was one of the worst places for him. He was full on arm flapping, in meltdown mode. She asked me if I had any thoughts on what was going on, with my eyes full of tears I said, something sensory, speech delay, and that a few people had asked me if he had autism. I fully expected her to say, it's not autism; but instead she said, autism is my concern, I'm going to refer him to be evaluated.
I'm pretty sure I cried the entire way home, every thing was a big blur. How on earth would I handle a special needs child? Would he completely lose his speech? Would I ever hear I love you? Would he ever say "mama" again? When was the last time he said "mama"? A year? 13 months? 15 months? I loved him so much, how did this happen? Isn't my love enough to conquer all?
His 2 year checkup had been in the beginning of December 2011, in January we had his intake assessment with the coordinator, Jeff. Daddy took the day off of work to be here for this very emotional day. Of course, Jeff mentioned all the red flags for autism that he saw Mr N displaying during the assessment, but then there was the tiny glimmer of hope that it might not be autism at all, he did have some speech, he did have some eye contact, it could be a sensory disorder & speech delay. I held on to that little tiny chance for quite a while.
Next up came his speech evaluation, he was 1 year 4 months in expressive speech, and 1 year 3 months in receptive speech. I was so excited to know he wasn't even a full year behind. I don't know why this made me so happy, but it gave me hope and relief. We had another meeting with Jeff to discuss the results of the testing he had done, and the results of the speech evaluation. Mr N's scores qualified him for an autism evaluation and some services through their center. We had an infant teacher come one day a week for one hour for the weeks leading up to his autism evaluation. She was our miracle worker, Mr N loved her, he would run to the door when she arrived, and walk her to the door when she left, waving to her as she drove away. He started increasing his number of words, instead of losing words, for the first time in a yearish. When he first started with the infant teacher, he would only last about 15 minutes before he'd be so overwhelmed that he'd want his milk and to lay down. After a couple of weeks he realized that he could just take a quick break, and then get back into it. This was HUGE! It really changed everything in him, he realized this worked not only with his teacher but in various aspects of his life.
Mr N's autism evaluation was almost 2 hours away, I got up early, he had an 8:00 appt. I just hoped he would be cooperative. We arrived a little early and sat outside the office waiting for the psychologist to arrive. I was on pins and needles, the kids were getting restless, we went outside and walked around for a bit, walked in the hallway a bit, finally, the doctor arrived. She welcomed us right in and the kids immediately started playing with all the toys. During our visit Mr N even indicated he wanted to use the potty. We hadn't started any kind of potty training, but sometimes he like to pee on the potty like a big boy, so we let him and praised him.
About 1 hour into his evaluation he wanted his milk and laid down in my lap. This typically was the end of his productiveness. I apologized to the doctor and excused ourselves and started packing up our stuff to go. I certainly didn't want to waste her valuable time while he settled in for a nap. As I was packing up and arranging to make the trip in again the following week, he finished his milk then got up and started playing again. Then he climbed back up to the table to finish the rest of the testing there. I was soooo proud! I thought that she would need to go over everything for weeks and decide whether or not he really qualified for autsim, but before we even left she said she was going to let Jeff know that she was diagnosing him with autism so we could begin services right away.
I was devastated, how could this be? Just look at him! He's sooooo cute, he's so lovable, he's so sweet, that isn't autism, he's an amazing little guy, how can you say he has autism? I called Daddy at work and asked him if we could come by and see him. I couldn't talk without tears spilling out of my eyes, plus the kids LOVE going to see Daddy.. But, of course, the kids both fell asleep before we got to Daddy's work, so we just talked in the parking lot as I told him the devastating news. He held me as I cried, once again mourning the loss of my son. Would he ever enjoy normal little boy stuff? Would he like to go fishing and hunting with his Daddy? Would he ever talk? Would he play baseball, ride a bike, drive a car, go on dates, get married, have kids, get a normal education, hold down a job? How was I going to handle this? Would I ever be able to go grocery shopping without a meltdown from sensory overload? Would I ever sit more than 5 minutes at meeting without having to take him outside?
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