Elise was diagnosed with Autism Spectrum Disorder today.
I was actually surprised how hard today really was and having the doctor officially tell us. We've "known" for the last 5 months that Elise has autism but today we got the official word that we're in this for the long haul.
I guess I really shouldn't be surprised at how I feel because I'm always surprising myself at these moments that are hard. It's all part of the grieving process, but thankfully these moments are much fewer than they have been. I think the hardest part about today was seeing on paper how behind she really was. Her language and motor skills are that of what a typical 7-11 month old child's would be. Thankfully with more therapy and starting so early, a lot can be done to help her and a lot of progress can be made.
At the beginning I was overwhelmed with it all. I felt like I was on an emotional roller coaster. I never knew when something would set me off; it would catch me completely off guard. I remember being in the grocery store by myself and it hit me again and I started to cry. Sometimes I think I'm strong and I'm doing good, then again it just hits. I do feel stronger now, but I still have my moments.
I was talking with a friend who has a child with autism. I completely understood when she told me, "It's not easy knowing your child isn't going to be normal."
I learned that about Elise at the beginning of February 2013.
I took her in to her 2-year check up. The nurse was asking me if I had any concerns for the doctor before she came in. I told her I was concerned about Elise's development and speech, knowing they weren't where they were supposed to be. I had come to the doctor's office figuring Elise would be a little behind, get some therapy, then she'd be fine.
The nurse then left an autism screening evaluation form for me to fill out. I began filling it out. When I got to the question where it said, "Does your child wander with no apparent purpose?" tears automatically filled my eyes. That one sentence summed up Elise perfectly. It was the first realization I had that Elise could potentially have autism.
I blinked away the tears as the doctor came in. She began asking me questions. Every now and then she'd pause, look over my answers then begin asking me more detailed questions.
Finally I asked her, "Is Elise at risk for autism?" She told me there were quite a few red flags for it and that she wouldn't rule it out. She then went on to tell me what steps needed to take place next and therapy needed to be started as soon as possible.
I held it together until I got to the car and the possibility of her having autism hit me and I couldn't hold back the tears any longer. I drove to Ez's work and he came out with a chocolate bar for me :) and we talked. I think we both knew it then, but at least I was in denial hoping she was just "significantly behind" as the doctor put it.
Sleep was hard that night. I kept waking up, hoping it was all a dream. The tight knot in my stomach told me it wasn't, making it difficult to fall back asleep.
It's weird because all of a sudden everything's changed, yet nothing has. Elise isn't any different than a few days ago, but now I see her differently. As hard as it is knowing that she has autism, it is also a relief. Before I knew, I was getting really frustrated with her. Here she was, almost 2 and she didn't know how to use a spoon, wouldn't touch a pen or crayon, and had stopped talking.
I remember thinking, "How do you not know how to use a spoon?" "It's not that difficult!" yet I would have to put her hand on it, and hold her hand on the spoon and put it in her mouth. If she ever let go of it, she'd just stare at it, like she had no idea what to do. Now that I know, I find myself so much more compassionate and patient with her. I know these virtues will be tested much more in the future, but just knowing helps so much.
It's amazing because it feels like I've completely fallen in love with Elise all over again. I understand her, to some degree, so much more and I'm seeing things in her that I haven't noticed before. Things she does that I was always confused about, now I love and am fascinated with why she does them and wonder what she's thinking.
We've told the kids and they've been amazing with her. Tonight Bryn said before going to bed, "Mom will the baby have what Elise has?" I told her I didn't know and asked why. She said, "I hope not because I really wish she could talk and play with me." Those words pierced my heart.
I hadn't considered much of how this was affecting Bryn and Brock. I guess they've seen and been around enough other 2-year olds that they know what they can do. They probably want their sister to play and do the same things those other kids are doing. Although they may not have the typical relationship with her that most siblings have, I do know that she will be a great blessing in their lives.
My heart is full right now. We have been so blessed with the kindness and thoughtfulness of friends and family and we are very appreciative. It's a very humbling experience to be in. I've never been on this end of something before. I'm just so amazed at the love and concern people have for us. I know they are God's hands in helping lift us up.
I feel so much gratitude! I know our Heavenly Father is there on our right hand and left hand with His angels round about to bear up. I've felt so much strength and I know it's because of the prayers being said on our behalf. It's incredible. I've always heard about people feeling strength or help from prayers during hard times, but never have experienced it before.
It's real though. It's a really neat thing.
A president of the LDS church said,
"God does notice us, and he watches over us. But it is usually through another person that he meets our needs." -President Spencer W. Kimball
I LOVE being a mom to my 5 kids; one with special needs. There is no greater joy than being a parent! I love each one individually but this blog will mostly focus on our daughter with special needs and our journey with her. Thanks for reading!