As the mother of 4 you would think I would know better. That even though your children have the same parents and are brought up in the same environment with similar parenting; that they will not be the same; they will all be different. Thomas being special needs is his own category, however we enforced the same rules for him as we did for the girls. That doesn’t mean that our style of parenting worked for him, it didn’t but we didn’t know what he needed at the time.
In retrospect our older girls were so, so typical. Like they met each and every milestone exactly when they were supposed to. No matter what age or stage of their growth and development. Even into young adulthood. I won’t say we had it particularly easy with Lelly and Alyssa because even neurotypical children have their challenges. For instance Alyssa sailed through junior high and had a great, fun experience, I was very happy for her because my junior high years were hell. So I couldn’t help but expect the same for Lelly. Wrong. My girl was bullied, not cool. And to make matters even more weird she was bullied by a girl she’d known and had been friendly with since pre-k! Freaking weirdo bully. She mysteriously stopped when I called their house and left a message to speak to her mother who I also knew since the girls were in pre-k. Shocker.
Alyssa is my very sweet, easy going but not a pushover oldest girl. She has so many oldest child traits and I love that about her. After watching Thomas meet his milestones late or not at all; It was refreshing to watch Alyssa grow as if she read the book on what she was supposed to do next. I thanked God for her every day back then. I was so grateful she was so typical.
Lelly is my middle girl and has been on the run since she was a toddler. My earliest walker at 11 months and quickly turned into my earliest runner as well as the child to climb out of the crib earliest at 11 months old. I cried when she was out of the crib because she was so difficult to contain. My Lelly. She was a riot and quick to make you laugh. She still makes me laugh like no one else, except my husband. She is also wonderfully typical but with her own Lelly flair. And that’s ok. She graduated high school early, began college early and graduated college early. I would expect nothing less from my “runner”. She landed a great job out of college and before I knew it we were helping her move into her own apartment in Manhattan. I never thought I would be as sad as I was when Lelly moved out. But all it’s well now and we’ve adjusted.
Our youngest daughter, Sam… is giving us a run for our money. She’s also a typical child meeting every milestone early or on time. She was my baby after 2 losses. I totally enjoyed her babyhood, I also had a helper (Alyssa) who was in love with her little sister. Sam growing up however has been quick to display to us what it is like be a person of extremes. Extremely independent, extremely outspoken as well as extreme in acting her age. My older girls did at different points in their lives express to their father and I how little we know about life when they were teens. Sam takes it to the nth degree. There are times I wonder how I made it this far being so very clueless about life in general. Sam is just so very different than her siblings. And that’s ok, it really is. She does talk to me, like really talks to me, about her life, how she sees the world, what’s really going on with her friends. Important things. I appreciate her for that. I could use just a little less of the extremes.
I was a stay at home mom for the majority of my kids’ lives. I worked part time here and there but for the most part I was a full time stay at home mom. I don’t regret staying home. I won’t say it was fun per say; but I was able to be there for everyone in a way that worked for our family at that time in our lives. I was able to go to all the school plays, classroom events and went on a few class trips. I was never a PTA mom; not that there’s anything wrong with that, it’s just not me. I was also able to attend Thomas’ many IEP meetings and all the evaluations I could be there for. The main reason I was a stay at home mom was because of Thomas. We didn’t have anyone to watch him or be there for when he got off the bus from school. My mom helped us out when I did work part time but I know in those days Thomas could take a toll on even the most patient person out there. We used to say he could make Mother Teresa curse, haha. But seriously he could’ve.
I began working full time when Samantha was around 9 years old. I loved it. Sam is very independent and I didn’t have to worry about her. Plus my older girls were around when Sam came home from school and Thomas was in residential school so all the stars were aligned for my venture to the working world. I was surprised at how much I enjoyed working. It took some getting used to not having my house as clean as it was when I was home all the time, or dinner always ready at 5:00. But we adjusted and the girls helped out and we made it work.
So there was the stay at home stage, return to work stage, watch our oldest girl get married and move out stage then my most difficult stage: watch Lelly move out after graduating college stage. When my older girls became young adults/older teens I really enjoyed them. I felt like I spent so much time and effort into raising them; to be able to enjoy them was like the icing on the cake. When Alyssa and Sam became engaged it was great! We watched them plan and fund their own wedding while they both were working full time in the fields they went to college for. Two wonderful, young (22 and 23 years old), very smart adults making their way in the world. I was never so proud. It was an adjustment when Alyssa went to live with Sam but we had a whole wedding lead up to that moment. And it was inevitable.
Then there’s my latest stage; my Lelly stage. My wonderful, waits for no one girl graduated high school early to begin college early and took so many credits per semester she even graduated college earlier than she was supposed to. She then landed a great job and before I knew it was moving out with a roommate to the upper east side of Manhattan. A bit of a whirlwind. Don’t get me wrong I’m happy for my girl. I’m so so proud of her and all she’s accomplished so far. I just thought I’d have more time enjoying living and being with her. My Lelly makes me laugh like no one else can; except her father. Having her move out so early was very hard. To have my girls so ready for adult situations at such young ages… I did something right. They are both successful young women with fully independent lives. Isn’t this what’s supposed to happen? No one prepares you for this stage, them leaving after you’re finally sitting back and enjoying them when they reach adulthood. Everyone says enjoy them when they’re little. Uh no. Little kids are hard man. Raising them is hard. Enjoy them when *you* enjoy them. And for me that time is now.
Ever since Thomas went to live in the group home I’ve noticed a significant growth in the way he communicates and says things. The first thing I noticed was a year or so bago when Thomas told me he “really enjoyed dinner”. The word “enjoy” was new vocabulary for him. In the past he would simply tell me he liked dinner or that it was good. But to use the word “enjoy” was a new concept and I was proud of him.
Today when I picked him up, Thomas told me he thinks about me, that he thinks about “Daddy, Alyssa, Lelly, and Samantha.” “I think about all of you during the week.” I was super impressed with that whole expressed thought process. He is still growing and learning and I hope it never stops. Thomas’ IQ is one that classifies him as mentally retarded. Those words still sting even to this day. So to see his progression is amazing to me. You never know how far someone can go if you don’t place limits on them.
We’ve never placed limits on Thomas. We had no idea he even had brain damage until he was 12 years old. Until then we treated him as much like a “regular” kid as we could even though we knew he had something very wrong going on. It was a very frustrating 12 years before we we referred to a renowned neurologist way uptown at Columbia Presbyterian. Dr. Arnold Gold. He gave our son such a thorough neurological exam we’d never seen before. I had taken Thomas to different neurologists and many specialists before this. But there wasn’t anyone who could compare to Dr. Gold. He took a complete history from me and I remembered everything back then. Every milestone as an infant, every doctor we had ever seen, every diagnosis, every medication Thomas had trialed and what he was currently taking. I felt like God had prepared me for this visit. Dr. Gold then went over every test result, every MRI report that we gave him; and then he laid the heavy diagnosis of brain damage. I remember Tommy and I both felt as though someone had punched us in the gut. It took a while for us to come to terms with that diagnosis. It did however make sense and we were finally able to put a name to what was wrong. Even though we had a definitive diagnosis it didn’t mean Thomas had changed, he was still Thomas and we still had the same challenges as before our visit with Dr. Gold. The only thing that changed was the label written down officially on paper.
After watching Thomas grow these past couple of years I think of him as developmentally delayed, still; not so much developmentally disabled since there’s still things he can learn and talk about that he didn’t have the opportunity to do during the proper/scheduled time when he was supposed to do those things, aka “milestones.” He’s more affectionate with me now than he’s ever been. After I picked him up from the group home we stopped at CVS. As we left the store Thomas suddenly grabbed me, and put his arm around my neck to pull me closer and give me a kiss on the cheek. It was incredibly sweet and impulsive. I loved it. I’m looking forward to seeing Thomas grow some more.