When Lucy was around 9 years old, she was diagnosed with Asperger’s. We didn’t believe the diagnosis, and subsequently went to a total of 3 psychologists to confirm. All of them agreed. There is no gray area – Lucy has Asperger’s.
The last few years have been tough. At first, there was a lot of denial. How could her doctors not have noticed this for so long? 9 years old is a really late diagnosis, and we had such a hard time wrapping our minds around it. She was an only child for so long, and we simply didn’t know what was “normal” and was wasn’t. We thought she was just a “difficult” child.
After a lot of therapy, we began to truly understand. We still struggle, but Lucy has made leaps and bounds of progress. She still has 2-3 meltdowns a week, but this is a HUGE improvement over 2-3 per day! We still have a ways to go in other areas, but we’re getting there. Lucy still struggles greatly with self-esteem issues and has such a hard time keeping things straight in her mind. She forgets things very easily – which makes school difficult (although her she has a gift for rote memorization when it’s something she is interested in). She’s still ridiculously smart (She tested beyond measurable grade level on her beginning of the year reading tests), but it is still a fight to keep her grades up.
Why am I telling you all of this? Because I have a huge amount of mommy guilt on my shoulders, and just came to the realization that I am grieving. Not Lucy – because I have accepted that she is who she is, and she is exactly how she is supposed to be. I know that she although things will be more challenging for her, she has the capability to overcome those challenges, as she’s shown over the last 3 years.
I’m grieving Emma.
I watch her now, and I wonder how long we have. How long until she loses focus? When will the meltowns start, and the screams of how much she hates me? When will she start hating herself and noticing the differences between her and the other kids? She is already showing some little signs of Autism, although they could just be normal kid things. She can’t stand to have her food changed. For example; don’t even think about cutting a sandwich in half if she has already seen it in it’s whole state. That begins a tantrum (I’m trying hard to save the term “meltdown” until I absolutely have to) that lasts a good 20 minutes. Actually, she can’t stand change at all. AT ALL!! Also, she has the same gift for memorization as Lucy. She watched Frozen maybe twice before she had it memorized verbatim. Like, she quotes the entire movie – even vocalizing the instrumental music between lines. It’s ridiculously cute, but at the same time, it makes my mama heart worry. She toe-walks, which could be totally “normal”, but what if it’s not? So many of these things seem so small, but remember – no one had a CLUE that Lucy was autistic until the end of third grade. Lucy did not have the typical indicators. No delayed speech, above average intelligence, incredibly social, and even makes eye-contact (most of the time). It could be the same for Emma.
I know that no matter what happens, we will deal with it as a family, and will love her no less. But, I am scared. The fights with Lucy have pushed me to the brink of my abilities on more than one occasion. I can’t even tell you how many tears have been shed wondering what I could have done different. What can I do to make her happy? WHY CAN’T I FIX THIS!! I am so scared, you guys! I don’t know if I can go through it all again. Also, I don’t want to see my darling miracle baby struggle in the same ways as Lucy has. I’d give anything to have Lucy have an easy life, where she can seemingly skate through everything. She is such a beautiful girl on the inside and out, and it about kills me to watch her struggle, especially because she just doesn’t understand “why”. She thinks there is something wrong with her and no amount of reassurance has been able to take that thought from her mind. How do I protect my child from herself?
For now, we try to work through the issues we know about, and brace for the ones we don’t. With Emma, I’ll just soak up every worry-free moment she has, and pray that they last. I know that these things that make me worry could be nothing, but I can’t make my heart relax. Waiting has never been my strong suit.