Thursday, March 24, 2016

2 years post-diagnosis.

As I look over at my sweet little boy on the couch struggling with a cold, I remember today marks two years since Emmett was diagnosed with autism. I think about what has happened within those two years and I can't help but feel lucky and grateful. Matt and I have gone from hardly knowing anything about autism to making it an everyday part of our lives. And reading countless books and articles. And going to classes. And listening to speakers. Emmett has gotten many forms of therapy and has taken some big strides. He has also taken many baby steps. He has gone from not being able to tolerate going anywhere near a public restroom to going #2 in public. :) He can speak in full, detailed sentences, knows how to throw a ball correctly, can put on a jacket and slip shoes on by himself, can be in crowded rooms for longer than he used to, and can tolerate having messy hands (for a bit). These are all things he could not do two years ago. He can also answer simple open-ended questions.
The thing I am most grateful for during these last two years is that I can have a wonderful relationship with my son now because I understand him. I know how his brain works and what he struggles with. I understand his sensory and developmental challenges. I understand that there are things I can't mad about because he doesn't know any better. I know when to push him and when to back off. I no longer look at him frustrated because I understand my little buddy. That understanding has opened up many doors and has strengthened my relationship with him.

This does not mean I am no longer worried or stressed out about him. Did you know that mothers who have an autistic child can experience the same level of stress that combat soldiers do? Think about it. COMBAT SOLDIERS. Sounds a little intense, am I right? Kind of blows my mind. I can't tell if I've experienced that level of stress yet, or if I'm tolerating that stress better and therefore don't think it's that bad ?? Is that even possible? I know God will not give me more than I can handle, but I still question it.
Meltdowns are hard. At times they can be harder than tantrums because for Emmett they are usually silent, which means he won't communicate what is wrong.



At this point in time, here are the symptoms of autism that Emmett demonstrates:

Social differences
  • doesn't often have appropriate facial expressions
  • unable to perceive what others might be thinking or feeling by looking at their facial expressions
  • doesn't show empathy for others
  • uninterested in making friends
Communication differences
  • doesn't always respond to name being called but does respond to other sounds (like a car horn or dog bark)
  • mixes up pronouns
  • doesn't start or can't continue a conversation
  • has a good rote memory, especially for numbers, letters, songs, TV jingles
Behavioral differences
  • flaps hands, rocks, spins, sways, walks on toes
  • likes routines, order; has a hard time with change
  • obsessed with few/unusual activities, doing them repeatedly throughout the day
  • plays with parts of toys instead of the whole toy (this is getting better)
  • sensitive to smells, sounds, textures, touch
  • looks at objects from unusual angles
^^Emmett "hiding"
April is just around the corner. Don't forget to wear blue on April 2nd to support someone you know who has autism! If you pass by our house look for our blue porch light.:)
2015 Autism 5K Minneapolis, Minnesota
I will be posting on the team Emmett group on Facebook soon about the 5K details. Mark your calendars!


Wednesday, March 23, 2016

winter.

This winter has been challenging. Christmas and New Year's can be stressful on Emmett; visiting new places, faces, and not having his usual routine. Having the wide open time during the school break can be hard for him too. He doesn't know what to expect or what to do with himself. So he becomes more anxious and on edge. It's easy for him to become overwhelmed and transitions are harder.
He was pretty brave sitting on Santa's lap this year. And he joined the other kids on stage at our church party to sing a couple of Christmas carols. :) He also tried sledding and seemed to like it! Matt sat with him on the sled and they went down a pretty tame hill.

School: This has definitely been a challenge over the winter. Emmett has been waking up crying or melting down because he does not want to go to school. He will beg me to stay home. He has also had accidents in his pants both at school and at home. Something is going on and I haven't figured out what yet. It could be sensory overload. It could be the kids. Not sure yet. He also has not eaten his lunch most days because he is not asking for help to open his containers. :( So he will sit there in silence wishing someone would help him. This breaks my heart. His teacher has also informed me that his is usually a loner outside during recess. He wanders around by himself or just watches others play. He still has not made any real friendships with other students.

On the flip side, he is very interested in reading and is getting better at writing and drawing. He is starting to draw people. :) His people are the cutest things. He is also interested in numbers, which is great! Maybe he will be the only one in our family who is good at math....

At home, Emmett is getting better and trying to dress and undress himself. This can make him very frustrated, but his is dealing with that frustration a bit better. We give him tons of praise when he does anything frustrating (to him) on his own. Go bud! He has also tried taking a shower a couple of times! Matt or I will go in with him and he is loving it. I think he really likes the feeling of water hitting his back.  
little belly :)

Silent meltdowns/shutdowns have been happening more frequently. He will either curl up into a ball or will run back to his room and hide under his covers. I usually give him some time before I try to make things better. Sometimes the meltdowns force him to take a break and clear his mind. 

Feeding therapy evaluation nightmare: At the end of February, Emmett was finally up for a feeding therapy evaluation at Fraser (we have been on the waiting list for 9 months!). I picked him up from school and we drove to the Eden Prairie location for the eval. I tried to prep Emmett as best as I could, but I don't know if he fully understood what he was going to have to do. When we got to Fraser things seemed fine. The evaluation started and the first half was mostly asking me questions while Emmett played on the floor. He seemed pretty quiet. Then the therapist started getting out some food and utensils and telling Emmett to come sit at the table. He was really hesitant and had this look on his face like he was going to cry. He was so nervous and stressed about the strange food on the table that he completely messed his pants. Diarrhea right then and there. So the last half hour of the appointment was me rushing Emmett to the bathroom and cleaning him up and calming him down. I threw his soiled clothes in the garbage, apologized to the therapist, and we left. Lovely.
Aside from potty training, I know feeding therapy is going to be very stressful for him. He is going to hate it and I will probably hate watching him being miserable. I know this is going to improve his diet and help him to be less sensitive with foods, but I hate seeing him struggling. He will be going once a week so we'll see what happens.