I’m not perfect.
But there’s still one that I can’t seem to shake and I wonder if I ever will be able to. I say this because it involves my daughters who are 12 years apart in age but so similar in some areas. Sometimes I even have to wonder if my toddler is more advanced than her teenage sister. It’s becoming clear to me that Squeaker will have more opportunities in life. And that’s not to say that Sweet B can’t enjoy a quality life, just that it will be so much more different. She’ll need on-going adult support and will likely never live on her own. This is just one of the realities that goes along with being the parent of an autistic child. It’s a very real part of the future that our children face. And while I may not be able to predict the future, I can do whatever I can now to ensure that Sweet B’s future is full. Even if that includes learning to forgive myself- something that I have struggled with from the day she received her autism diagnosis.
Sweet B’s autism has been one of the biggest ongoing struggles in my life. Whether it was wrestling with the initial diagnosis or coming to terms with my personal guilt; this has been one journey that’s filled with seemingly endless ups and downs. And I promised myself that after Squeaker was born, I wouldn’t compare them because that wasn’t fair to either one of them.
They’re different, of course, but they’re also sisters so they’re bound to have a few things in common.
It wasn’t until I sat down and really thought about how much that they have in common that reality hit me in the face. Allow me to explain:
Aside from the obvious (they’re both female, they both have brown eyes, they both have dark hair) there are a few things that they have in common as of February 2015.
- They’re both in diapers. Though Sweet B is mostly potty trained, she does still require an adult diaper at night. Squeaker is only 13 months old and has yet to show any interest in potty training… I’m not going to force the issue with her either- she’s 13 months old. We have plenty of time for that.
- They’re both mostly non-verbal. At this point, I think they almost have the same amount of emerging vocabulary though, if I was going to be brutally honest- Squeaker may have a slight edge on her sister at this point. Her vocal approximations and attempts at vocabulary are slightly more coherent than her sister.
- They’re both fairly mommy dependent. And at times, rightfully so, though I should also call this adult dependent. In terms of every day life skills (feeding, dressing, bathing, etc.). They require almost the same amount of support. For Squeaker, I would expect this. She’s still a baby. For Sweet B, of course it’s a matter of what she’s able to do and what she’s unable to do. Everyone on her support team is continuously trying to foster independence with her. Some skills she can get and some she’s really good at. Others, not so much.
- They’re almost similar with basic fine motor skills. Sweet B is unable to write her name without assistance. She has difficulty coloring properly (ex. staying within the lines, filling in an area, drawing basic shapes) and holding writing instruments properly. Squeaker is just learning how to color and already her tripod grasp is similar to her older sister.
Of course there are some things that Sweet B can do that Squeaker can’t do or can’t do yet. Cognitively, Sweet B is around 7-8 years of age with some skills. Other areas she’s higher and others she’s lower. I can’t really measure her literacy level because it’s difficult to measure that with someone who’s mostly non-verbal and can’t repeat. Squeaker is a year old and quite frankly, if she was reading independently, I would be floored. She can identify certain animals (mostly cats, but also sheep and cows) in books or elsewhere.
Sweet B is mostly able to feed herself independently, but then again, Squeaker is also catching up in this area. They both prefer to use their fingers, but with Squeaker I would expect it. With Sweet B, I’ve come to accept it.
It hit me, that one day, just how similar they really are. And after the moment, I also came to realize a few things:
- Sometimes being a special needs parent really sucks. And maybe I wouldn’t think this so often if I didn’t have a daughter who was, so far, developing normally. I’m beyond thankful that Squeaker is, for lack of a better term, “normal” and that she’s developing as she should. I’m also worried beyond belief that something is going to happen to her, that 15 months I’ll start to see the same regression that I saw in Sweet B. And at that point, all I can do is pray to God- please do not take my baby away from me. Because that’s how it felt with Sweet B. Yes, she’s still my daughter and I love her with my entire being. I love her for who she is and everything that she is. But I don’t know if I would have the strength to go through it again.
- Sometimes the guilt is really overwhelming. I should be thankful for everything that I have in life. I should be thankful that Sweet B is relatively healthy. Okay, so she has autism and she’s non-verbal but there are also a lot of things that she doesn’t have. And then after I look at Squeaker and pray to God to please not take my baby away… I am hit with an overwhelming wave of guilt. Who am I to ask God for such a thing when there are women out there struggling to conceive, who have suffered miscarriage, who have lost babies after birth… Who am I to even think such a thing when there are moms out there struggling or burying their children ahead of them. Who am I to be so selfish to ask God such a thing.
- Sometimes, I realize, I’m only human. I’m not above feeling, I’m not above reacting, I’m not above being selfish, and I’m not above feeling helpless. I’m also not above judging or being jealous. I’m only a human being. I was one of those moms who would judge other special needs moms for complaining about their special needs child- and yet, here I am doing something so similar. I’m now one of those moms who compares her two daughters, even though I know I shouldn’t because they don’t deserve that from anyone- and especially not from their own mom. But I also need to remember- I am enough.
My children mean the world to me and I would do anything for them. Which is why I know that it’s better for me and them if I stop the need to compare them. It’s not fair to them and it will only drive me to an anxiety attack. Even if I did see this coming- knowing that with every milestone that Squeaker hit, it could potentially be something that Sweet B didn’t hit. Or something that Sweet B did only to regress later on. I still can’t shake nagging feeling at the back of my head that yes- it could happen to Squeaker.
And if it does, it does.
That’s just life. And I’ll deal with it.
This post was originally published on February 3rd, 2015 and updated on March 4th, 2016 to include an updated image.