three years - post diagnosis, and life lately.

^^class field trip to the planetarium 

That smile. Those dimples. Such a special boy. I can't believe Emmett is going to by seven next month! I know, I have been terrible about posting on a regular basis; sorry buddy! Life is just so hard to keep up on sometimes...

It has been three years since Emmett's diagnosis. Here are the current symptoms of ASD he 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 concern or empathy for others
• uninterested in making friends

Communication Differences

• repeats exactly what others say without understanding the meaning
• doesn't respond to name being called but does respond to other sounds
• mixes up pronouns
• can't continue a conversation
• has a good rote memory, especially with numbers, letters and song lyrics

Behavioral Differences

• flaps, rocks, spins, sways, walks on toes
• likes routines, order, and rituals; has difficulty with change
• obsessed with a few or unusual activities, doing them repeatedly during the day
• plays with parts of toys instead of the whole toy
• very sensitive to smells, textures, sounds
• unusual us of vision or gaze - looks at objects from unusual angles
• poor fine motor skills

I have seen progress with certain things in Emmett. His imaginative play has gotten SO much better. Ethnie has had a major impact on this. She works on helping him with his playing skills without even realizing it. Plus, she usually bosses him around and tells him what to say so you could say he is being "trained." He has also gotten better at some of his proprioceptive skills. He has always been interested in jumping on trampolines, but will only try it if he is the only person on it (which almost never happens if there are other kids around). He also would be too afraid to jump so he would just walk around on it. This year, he has been tolerating one or two other people on the trampoline with him, and doesn't get upset if he falls down. Jumping is getting a little better too. He is using equal force with both legs to jump instead of doing a "marching" type of a jump. And the joy on his face when he figures it out is priceless. :) 

^^wacky outfit day at school. getting better at dressing by himself!

^^reading books naked is the best

^^Emmett has the talent of crossing one eye :)

Emmett has been pretty self reliant in the morning. He will get up, go to the bathroom (usually), then find something to do until either Ethnie or I wake up. Lately, he has been liking coming into our bed and snuggling for a bit before he goes to play. I love it when he does this. He comes in with his groggy little voice and crazy hair, hauling in all of his stuffed animals with him. 

We did the Autism 5K for the fourth year in a row. This year I got team t-shirts made! Of course, Ox was incorporated. I think they turned out great and represent Emmett well. 

This was the first year the weather was quite unfavorable. Unfortunately, it was 40 degrees, pouring rain, and windy. We were So. So. Wet. But it was easy to stay positive knowing why we do this every year. So we did not get any pictures outside. We also did not have as many able to make it this year. But the kids were real troopers! They were so good and there was minimal complaining.

Brunch at Betty Danger's Country Club

^^the main man :)

Such a supportive big sister. :)

go team Emmett!

time to catch up.

I feel ashamed and irresponsible. I have not been posting regularly on this blog and I'm going to regret it if I give it up. It's New Year's day and I am able to start this year off right by making blogging one of my habits! It is important to me and to Emmett to have this documentation to look back on.
I haven't posted since April. Yep, a whopping 9 months! Wow, I'm laughing at how embarrassing that is. So sorry, Emmett! Obviously, much has happened in 9 months. There have been hurdles and new challenges, but also progress and exciting moments!

Emmett finished OT/feeding therapy at Fraser in June. We are going to miss Fraser dearly; they have opened so many doors for Emmett. He would not be the same boy today if he did not receive services there.

This was part of my mother's day gift from Emmett. It is so precious. I got teared up when I saw it for the first time and I will keep it forever. 

The Autism 5K was great this year. The weather was perfect again and we still had a 'team Emmett'. Ethnie walked the entire time and Emmett walked about half of the time. We are so grateful for the support from family.

team Emmett :)

the main little man! we love you so much, bud!

By far, the biggest transition Emmett had in 2016 was our move to Rochester. It was sudden and the whole process was a bit rushed. I was worried that Emmett would react negatively. In a way, it may have been better that way because he didn't have much time to react to it. It was also great timing because we moved shortly after school was out. That way, we had the entire summer to adjust to everything Rochester before adjusting to a new school. Emmett did surprisingly well! He shocked me with his flexibility and positive attitude! The hardest part for him was during the first two weeks of Matt's new job. Matt was already staying there and the kids and I were at home by ourselves. I had to pack everything on my own and it was stressful. During those two weeks, Emmett was very confused and would ask, "Where's daddy?" and "Why are there boxes?" every morning and night. It was very hot the day of the move. The kids were tired and bored, but they still did so well, considering all that was going on in their world. 

Emmett's 6th birthday, in the new place. It was less than a week after we moved and I didn't have anything prepared. I felt very guilty, but he didn't seem to mind. He only wanted to go swimming and get a cake. Such a sweet boy.

Emmett has made some progress in the water! Baby steps are exciting steps! The public pool near where we live was the kids' favorite place to go over the summer. The shallow end of the pool is just over three feet deep, which is perfect for Emmett to play in. The first couple of times we went, he would touch his feet to the bottom, but would not let go of the wall. Slowly, without realizing it, he would hold on with one hand, then eventually let go entirely without realizing it. He got really comfortable and started bobbing around all over! He was so proud of himself. However, he is still very overstimulated in the water and his stimming is a bit out of control. He physically cannot calm down in the water. He cannot focus or process what he needs to do in the water because he is too overstimulated. Sometimes, he tries to run around in the pool because he is too excited. If he stumbles or loses his balance in the water, he panics and forgets what to do. He still does not completely "know" where the bottom of the pool is. It terrifies me knowing he could drown in such shallow water. 

The other big step Emmett has taken in the water is the willingness to float in deep water. We went to Breezy Point resort over July and my dad got Emmett to float in the middle of the lake with him. We were all so happy about it; we all jumped in to join them! He was very nervous and clinging to us, but he was smiling and proud. He was also willing to stand on the bottom of the lake in the sand close to shore. A year ago he wouldn't dare.

A couple of new quirks/habits. Any time we go to the pharmacy to pick up my prescription, Emmett must play with the blood pressure kiosk. He has to stay and do it over and over again. He loves the feeling of the squeeze on his arm. If he is with me, I always have to plan on staying at least 10 minutes longer so he can visit the kiosk.

The other thing Emmett has been doing actually concerns me. Any time he sees something on the ground, he has to pick it up and put it in his pocket because he is worried it will "blow away." For some reason he gets really upset when it is windy and things are blowing around. Sometimes he will cry when he sees it. 

These are the kinds of things I clean out of Emmett's pockets every day after school. He will walk around during recess and pick up any little thing he sees on the ground. I am afraid he is going to pick up something full of germs or a harmful chemical (you never know) and get it into his mouth. 

So far he hasn't picked up anything too awful, but he will pick up used straws and bottles and such. 

We have found a rehab clinic in Rochester that we really like. It's called Stanley Jones & Associates and they were referred to us by Fraser. Emmett has been going to feeding therapy there and his therapist's name is Chrissy. She is great with him and he is really comfortable with her. She knows how to talk to him and how to help him better understand food. She has made great progress with him so far! 

Chrissy always eats the food with Emmett. She does everything with him. She has gotten him to touch, smell, and lick a few new foods that I have had no success with. They have a game where they "try" to lick a food 10 times. If they do that they try again and see how many more times they can lick or touch it.

It might seem strange or silly for such a tiny thing to be excited about, but it is a big step for Emmett. It takes all the courage in his world to put new food near his mouth, let alone inside it. So we always celebrate small victories in our home.

^^licking pineapple!

love you, buddy. :)

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.:)

I will be posting on the team Emmett group on Facebook soon about the 5K details. Mark your calendars!

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.

fall catch-up and 18-month post diagnosis update.

I have been neglecting this blog (some legit excuses, some not), but now I am back on track. There are a couple of important things to catch up on that have to do with progress.
School has been going very well. Emmett was recently bumped up to spending one extra hour in the regular-ed classroom. He is doing fairly well with doing tasks independently and being flexible when there is sudden change. I am still very concerned about lunchtime. Emmett is still coming home with only half (sometimes less) of his lunch eaten because he is not asking for help with opening his containers when he gets frustrated. He will just sit there and go hungry because he is unable to open his food. He also still needs a lot of support with putting on his shoes and coat. Now that it is colder, there is the extra challenge of changing into boots, snow pants, hats, mittens, etc. I know this is a time when Emmett panics or shuts down because he can't handle the "stress" of it all.

always making silly faces.

^^time for a new winter coat ?

Imaginative play at home has improved greatly. Ethnie is the best example he could have. Ethnie is ALWAYS imaginative and Emmett loves to copy her. Sometimes this can be a very good thing. He is playing with figurines that have conversations with each other. He is imagining where his cars are driving to and loves to tell me about it. 

^^Emmett will lay on the floor and stand up coins. I don't think I would have the patience to do this!

^^second visit to the dentist was mostly successful. Emmett refused to let them use the polisher on his teeth so the dentist used a toothbrush to brush the fluoride away. we also weren't able to get him to sit in the x-ray seat. next time, hopefully.

The biggest milestone Emmett has accomplished this year is becoming fully potty-trained.:) It seems like we have been waiting forever to be done buying diapers. Every time we bought a package we would say, "This could be the last package of diapers we buy!" Yeah, we said that for almost a year! Finally, at the end of September Emmett went poop for the first time on the toilet. I was SCREAMING I was so happy! He let one tiny poop out into the toilet, then jumped off because he was a bit freaked out. A few days went buy where he refused to sit back on the toilet again, but once he tried it again he was really proud of himself and it became easier and easier. Now, he is going like a champ and I can confidently say, "We are finished buying diapers."

^^Emmett's first tiny poop in the potty.

In November, Emmett made his first drawing of a person on the driveway. He never told me he drew it; I came over and asked him what he drew and he said "this is Emmett."

During school conferences in November we got to see some of Emmett's artwork in his classroom. It was so cute because we got to see his first drawing of his family. :) I couldn't help but compare his drawing to the other children's drawings. The other drawings had detailed, distinguishable people in them with happy faces and colorful backgrounds. Emmett's was very different. But I couldn't help but be so proud of him because I know how hard it was for him to sit and concentrate on his fine motor skills that is takes to draw shapes, lines and letters. I know he must have gotten frustrated, but he still finished. I look at this drawing and I see a special boy who knows that he has four people in his family and that he is very loved.

The end of September marked 18 months post-diagnosis. 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

• repeats what others say without understanding the meaning
• 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
• very sensitive to smells, sounds, textures, touch
• looks at objects from unusual angles