Thursday, February 20, 2014

a heavy heart.

I am instantly tearing up as I write this. I have had a heavy, anxious heart for over a month and it has been difficult to put my feelings aside and function like a normal human being.
Matt and I have had at least seven people approach us expressing concerns about Emmett. We payed attention to these concerns and on January 16th, we took Emmett to see his pediatrician, Dr. Balfanz. (side note: we adore him and take his professional advice (and personal advice) very seriously. If any of you are in need of a pediatrician in the St. Paul area, he's your man.:)) He asked us a series of questions about Emmett, looked at his past developmental tests, and observed some of the things Emmett did while we were there. Although Emmett has passed all of his developmental milestone tests, Dr. Balfanz pointed out some red flags in Emmett's behavior. The obvious ones were his lack of communication and certain mannerisms. He thinks these behaviors could be autistic. He referred us to the developmental pediatric specialty clinic at Children's Hospital.

On January 17th, I called Children's in the morning and had to leave a voicemail with the nurse (lame). I called two other referrals on the Doctor's list and both of those clinics have a 6-9-month waiting period!! Not willing to wait that long. I looked up another clinic in the metro area and had to leave another voice mail. I was getting anxious. I know I couldn't get my questions answered immediately, but I wanted the closest thing to it. 
A few hours went by and I felt so impatient. Emmett was napping and I was literally sitting, staring at my phone waiting for it ring. I layed down on the couch and said a prayer. I asked God to please expedite this process so I could help my son and know what to do. I wanted my mind to be at ease. Not even a minute later, my phone rang! It was Children's returning my call. The earliest available appointment is for March 24th. I was so grateful I didn't have to wait at least 6 months. My prayer had been answered immediately. 
Since then, a giant packet of information came in the mail from Children's. It had forms galore and a questionnaire with over 130 questions we had to answer about Emmett's behavior. I think Matt and I learned and realized quite a bit about Emmett that night.
Now we are just waiting for the big day. The assessment will be 4 hours long. Time has been snailing by. As soon as the hospital received our forms we were put on the cancellation list to bump up our appointment, but we have not gotten a call yet.
I'm not going to lie; I've had a couple of good cries about this. I never thought Emmett could be autistic. I always thought if you had autism, it was severe. But I've learned that is not the case. I've been doing much research on autism and aspergers, and I'm connecting the dots. For several months I've been frustrated as a mother, wondering why Emmett won't follow directions, is so particular, doesn't play with other kids, and just plain "doesn't get it". I've been wondering what I'm doing wrong as a mother. Now I see what could be going on.
I have so many questions going through my mind. Is Emmett autistic? Will he be able to go to a normal school? Will he be bullied? Will he be able to hold a job? Live on his own? Get married and have kids?
All of these questions break my heart. I believe as parents we all want our kids to be born perfect so they can take on the world with full force and live out their dreams. I want that for my kids.
Even though Emmett has a hard time with many things, he is a very happy boy. He smiles and laughs all the time. He seems to be happy with his routines and methods of playing. But he also seems like he has a world of his own. I have been extra observant and talking notes to give to the doctor.
Some examples of how Emmett plays. He absolutely loves playing with board games. But as soon as he's finished his 'task', he moves on to something else.
making a gingerbread house. notice the candies.
more interesting behavior. Emmett doesn't understand that doing this isn't okay. (pulling stuffing out of a pillow)
Emmett has frequent big meltdowns that we work through. I feel like lately I have been much more understanding and patient when he's having a hard time.
Maybe after the assessment he won't be diagnosed with autism. Maybe he will just need some speech therapy. All I know is once we get some answers it will open up a door of understanding between Emmett and I. We can begin any therapy or learning methods necessary to help him function the way I know he can. 
Please keep him in your prayers. He needs all the love and support he can get. He is my little buddy.

I love you, Emmett!