Who am I?

I am Amanda, a stay at home mother to two wonderful children, Fiona & Ferris. Fiona has Autism, possibly caused by a small genetic deletion at 22q13.1 (but not the region attributed to Phelan-McDermid Syndrome - although she presents similarly), but we cannot say for certain, as her particular deletion is undocumented. In other words, according to medical literature currently available, she is the only known person with a deletion in this exact region, and so it is of "unknown clinical significance" and we have no idea what her future holds. Currently she is almost completely non-verbal, her only real word with any real meaning being "boob" as she is breastfed. *gasp* Yes, you read correctly, my almost 3 year old daughter still nurses, and I'm proud of that fact. Ferris is a neurotypical little chubba bubba baby man. He gives me sanity, and hope, and comfort for the future. He is nearly 8 months old at the time of this writing, and he is my charming, adorable, little-big guy. He is also breastfed, and doesn't seem to mind sharing with Sissy, who is the neatest thing since pureed peaches in his eyes. Want to know more? Just ask!

Monday, March 21, 2011

Playing Catch Up - In The Beginning...

I probably should have started this particular blog a lot earlier, so I wouldn't have to play catch up with what has happened in the past, how we got to where we are now. But, I'm the eternal procrastinator, and here we are, with me playing catch up. Story of my life. Hah. See what I did there?

So where do I start? I suppose when telling a story, it is always best to start at the beginning. I could go all kinds of Pulp Fiction on you and start somewhere in the middle or perhaps the end, and go backwards, or jump around so much your head spins, but I will try to avoid that. I have a tendency however to talk & write in circles so to speak, so I apologize in advance if my train of thought gets derailed a few times. It happens.

Still with me? Good to hear! <3

When I learned I was pregnant with Fiona, I was elated. She was my little miracle. See, for the longest time, I thought maybe I was incapable of having children. I had always had super wonky cycles with no known cause, and never had any "accidents" otherwise known as unwanted pregnancies, and I was never on birth control. We did take steps to prevent before we were ready, but you always hear about people getting pregnant with these methods anyway, and in 6+ years of being a couple, we never had this issue. I'll spare the details there, but anyway, I thought maybe this combined with my cycles being so irregular meant I would have trouble having kids. When we finally decided we were ready to start a family, imagine my surprise when I became pregnant within the first month of trying. It kind of makes one wonder how so many "accidents" happen, user error I guess, but I digress. Sadly, I lost that first pregnancy, and this added to my fears of never having a child.

I had to take time then to let my body heal, physically & emotionally, and the doctor I saw (not a regular doctor, just the only one who could see me on short notice for aftercare for my miscarriage, I was only 7 weeks along - had not even had my first prenatal visit yet) wanted me to wait through 2 cycles to try again. That took 7 months (yes, like I said, wonky cycles), which was enough time for me to want to try again on an emotional level, so that worked out well. And so we started trying, and once again, within a month, I was pregnant. I was afraid to share my happy news, but at the same time I couldn't keep it to myself either.

I was very nervous to do anything, and wanted to do everything I could to ensure my baby's health & longevity. I did EVERYTHING right. I followed all the rules of what you are and are not supposed to do when pregnant. I didn't eat any forbidden foods. I cut out caffeine altogether. I took my vitamins religiously. I avoided smokers. I didn't drink alcohol. I did every single thing by the book.

See, when you have a miscarriage, in the back of your mind, even though it generally isn't true, you always suspect it was your fault somehow. You must have done something wrong to cause it. If only this... If only that... You become consumed by the "If Only" game. At least, I did. Now, I don't really feel like I did anything to cause it, but you just never know. Maybe I was under too much stress? This is an endless game of self punishment.

As the pregnancy progressed, I became less fearful, but I still followed the "rules". As my belly grew larger, and she became more active, I would sit and watch her move for hours. She was a kicker. Kick, kick, kick. Constantly. It actually hurt a lot of times, but I didn't mind. She was my baby, my blessing, my lifeline, my life, my everything, my world. My pregnancy was full of complications. I seriously could not catch a break. I had placenta previa, which was marginal by the end of the pregnancy, but I worried over it from the time I found out until the day she was delivered. I also had pre-eclampsia at the end. I had SPD, and horrible sciatica. But she was healthy, and perfect, and that was all that mattered to me.

The day before my EDD, I had an appointment, and my blood pressure was sky high, and I was sent to the hospital that day for an induction due to pre-e. When we got there, and we hooked up all the monitors, her heart rate started dropping erratically and everyone was really concerned. I was not in labor, we had not started any pitocin yet, and she was already clearly in distress. The doctor and medical staff all agreed that she would not likely tolerate labor, and I was asked if I wanted to have a c-section. I didn't *want* one, but I was fearful, worried my daughter might die if I was selfish in what I wanted, so it was an easy decision. Yes, just get her out safely, and off we went to the OR.

I was scared. I had never had surgery before. They gave me the spinal block and almost immediately I became a paraplegic and worried that I would never regain feeling in my legs, and had a panic attack then and there. I kept trying to wiggle my toes and when I couldn't it made me panic even more. People with anxiety conditions, be forewarned, spinal blocks suck. But if you don't think about it, its easier to deal with. I came to this conclusion and put it out of my mind, took some deep breaths and was able to calm myself. At 7:13 p.m. she was born, screaming bloody murder, a beautiful 6lb 4.7oz baby girl, seemingly in perfect health. Apgars of 8 & 9. I was kind of expecting a 40lb baby, but apparently I just ate way too much during my pregnancy. Heh.

I didn't get to hold her for 2 hours. I had to be stitched up, and sent off to recovery, and then finally to my room, and after what seemed an eternity, they brought her to me, around 9:15 p.m., and I was in love. You really don't know what love is until you hold your baby in your arms for the very first time. It is instant, and overwhelming, and amazing. She was beautiful. We had a 5 day hospital stay. I was fine the 2nd day, and they even offered to release me, but Fiona was very jaundiced (bilirubin levels got up to 21 at one point) and had to stay, and my insurance would pay for me to stay longer too since I had a c-section, so I wasn't going anywhere without my baby. Finally, we were released, and I took her home.

Breastfeeding was a real struggle with Fiona. She would not latch. I didn't understand why. I did everything I was supposed to do. I tried, and tried, and tried some more. I thought maybe her mouth was too small, or I was defective somehow, but kept trying, and meanwhile pumping and giving her expressed milk in a bottle. After 2 weeks something clicked, and she finally latched on, and I was so happy I cried. It was still a struggle to feed her, because she seemed to tire easily, and would need topped off with expressed milk from a bottle, and this went on the first 2 months of her life, she would nurse for a while, but still be hungry, and take a bottle. Thankfully I had a tremendous oversupply so I didn't need to supplement with any formula.

Finally, when she was 2 months old, she got the hang of nursing better, and no longer needed, or would even take, a bottle. She soon forgot what a bottle even was, and became a total boobaholic. Every time I held her she wanted to nurse. I felt at times like all I was to her was a food bank. Never made me feel bad, or that I wanted to stop or anything, in fact she still nurses, lol, but I felt like we weren't bonding properly. She didn't seem to want to interact with me any way other than nursing.

Looking back, I can say that I always felt something wasn't quite right with her. I couldn't put my finger on it, but I knew she was different, and I kept myself in denial for a while. When she was around 6 months old, and still not properly bonding as I thought she should, I began researching Autism. I put it out of my mind though. Not my baby. I'm just being a paranoid new mommy. She's perfect, everything is great, and I'm being ridiculous. Back to the land of denial with me!

For the most part, she developed fairly normally. She started saying words, and was hitting most of her milestones on time up to a certain point. She seemed to have trouble with sitting up though, and was 9 months old before she could really do it at all, and only for short times, and it took a LOT of work to get there. But, 9 months was on the end range of normal for sitting up, so we weren't overly concerned. We kept waiting for her to crawl, but that one never happened. Again, some babies don't crawl and just go straight to walking, and she got around by scooting on her back, so again, no one was concerned. She had a vocabulary of about 20 words when she was a year old, and we were impressed with our little genius. Sure, she was lagging on some physical milestones, she wasn't walking yet, or standing unassisted (she could stand holding on to things, but not without), but she had a pretty good vocabulary, so surely that was why, she was just focusing on the intellectual rather than the physical. Again, no one was concerned.

At 15 months, she stopped picking up new words, and stopped saying the ones she already knew. By 18 months she was almost completely non verbal. She would say "Boob" and "Yeah" and "Mama" and "Dada" and that was it really. At 20-21 months she finally started walking. Hallelujah! Very late, but hey, she was walking. Maybe that was why she wasn't talking at all. At this point, "boob" was it. She had just shifted her focus to the physical was all...

She was extremely clumsy. She walked with her toes turned inward, and had an odd gait. But she was walking. Her balance and coordination seemed pretty crazy, and we suspected maybe she was having an inner ear problem, and maybe that was why she wasn't talking anymore. Maybe she just couldn't hear properly! We took her to a new doctor to have her ears checked, and they said her ears were fine (they didn't do the audio tests, just looked at them, but said there was no fluid, no problem), and that doctor thought maybe she had lead poisoning because of how awkward she was.

When we went to her regular pediatrician for her 2 year checkup, I broke through my denial. It was obvious to me at this point that my baby had Autism, and I needed to get her help. I showed 2 videos I had on my phone of Fiona exhibiting stimming behaviors to her doctor, and told her about all of the language regression, and milestone delays, and we did the MCHAT screening, and were referred to a specialist. I cried that day, both out of sadness, and relief. I had taken the first step, and felt a weight lifted off my shoulders, and now I just needed to follow through, one step & one day at a time.

There is more to tell, of course, nearly another year of moving forward, but I need a break, and I suspect you do as well, so I will save that for another post. <3

Thanks for reading. =)

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