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

second half of august and first half of sept.

The past month has been busy and I haven't spent much time on the computer. We'd rather be out enjoying the weather!

Second half of August:
The biggest thing that happened during the last half of August was that Emmett tried two new foods. He tried string cheese, which he is not eating every day (THANK YOU Fraser), and a gluten-free pizza from Costco.

The GFCF diet is hard, but we are going to keep working at it. It's tricky because I get excited about him eating the GF pizza, but it has cheese on it. But it's a new food. And I want him to try new things! So it's like I can't win with both gluten-free and dairy-free foods. In the end it may be harder for Emmett to give up dairy.
I have noticed Emmett has been much more imaginative with his toys. He has been creating dialog between toys and doing different things with them. It is so fun to listen to him! He says the cutest things and some pretty funny things too.
The biggest thing we worked on at the end of August was prepping for kindergarten. A neighbor gave him some books about kindergarten so we read those a lot. I also took him to the school a few times to play on the playground and walk the halls, just to get familiar with everything. This made him very excited for school. He was getting impatient about it he was so excited!

First half of Sept:
Emmett had an avalanche of newness come down on him. His schedule changed dramatically and got very busy. I waited too long to book a haircut with Kristy. Her schedule was full so I took Emmett to Gent to get his haircut (he totally needed it before school started). I purposely did NOT take him to one of those kids haircut joints because he would be miserable. The colors in there are wild, each station has a TV with a different movie playing, and it's loud in there. Why do kids places always have to look like a circus? I'm even overwhelmed going in there. So I took him to Gent, which is an upscale barbershop, basically. Plus, it's 8 blocks away. Emmett was really nervous and was hesitant to walk in the door. But it turned out to be PERFECT. The colors in there were very soothing, it was quiet, and they gave him a chair in the back corner so it was extra quiet. I had to explain that he wouldn't want his hair washed or the blow dryer turned on. Aside from a couple of confused looks, it went very well and Emmett did awesome. I gave him a cupcake for being so good. :)

^^stud

Emmett started kindergarten. This has been a bittersweet experience for me. It is so weird having both kids gone most of the day. I think it's harder for me having Emmett gone because he still seems so little. I was more nervous for him to start school than he was. I don't think he was nervous at all! And he was SO excited to ride on the big yellow bus. :)

^^support from the big sis

The first five days of school Emmett was so exhausted afterward that I had to carry him off the bus because he was passed out. Poor buddy! The bus driver couldn't even wake him. Going to school for a full day is hard work! I'm guessing within another week he will be well adjusted.
On top of being dog tired from school, Emmett started his new social group at Fraser on Tuesday. He will be there each Tuesday from 4:30-6:00. The first day went well and he had fun. He even got to ride the light rail with dad afterward. :)

august - first half.

Trying to push the potty training harder and the struggle is real. The kids spent a night at Matt's parents house. They worked on trying to get Emmett to poop on the potty for four hours. He held it in the entire time until it started running down his leg. Then they gave in and let him go in a pull-up. He is still very scared and anxious about it. We are still hopeful it could happen before school starts on Sep. 10th. I know he wants to do it so bad, but he just isn't at that point yet. I also know if I continue to push harder, he will become more stressed out and anxious.
Going pee on the potty, however, has been going VERY well! Last week, Emmett started going potty independently at Fraser. :) The clinician monitors him while he goes, but he barely need any help! Each time he does this, he gets a starburst. So we carried what he does at Fraser into our home and he is now mostly going independently at home as well. We are so proud of him and are elated that he is making progress with this. :)
The clinicians at Fraser have been working their magic with getting Emmett to try a new snack. He has put a piece of banana in his mouth (then spit it out) and has tried a bite of string cheese. Shocking. I asked him if he liked the cheese and he said yes, but I'm not sure if he knew what I meant.
We got the results from the diagnostic assessment back in the mail. It's a big 20-page packet and took me a couple of days to read through it. It's pretty meaty. These are also hard to read through because it reminds me about the reality of the situation. Emmett still needs all of the services he's been receiving. In a nutshell, the level of care he needs- a level 5 being the most/highest level of care a child needs- is at a level 3. We are hopeful this number will go down as time goes on.

july - second half.

Fraser had an annual diagnostic evaluation this half of the month. Every single patient needs to be evaluated. That means long meetings and thick questionnaires for the parents. We filled out one that took over two hours! It had very specific questions that required a "never, sometimes, frequently, or always" answer. Gotta love those. (Never).

The diagnostics measure how much progress each patient is making, i.e., how successful Fraser has been with each child. The meetings are exhausting and emotional, but necessary. The process is similar to what we had to fill out when Emmett was being tested. Neverending paperwork, I tell ya. 

^^at the children's museum. 

The other thing we have been hitting hard is trying to get Emmett pooping on the potty. Some days I feel like it's never going to happen. Other days I have hope. Matt worked with him on it one weekend I was out of town. Emmett sat on the potty for almost two hours, but never let it out. He even began falling asleep. :( Poor guy. He is still so scared to do it. We have tried to get him to wear a pull-up while sitting on the potty, but he refuses. We can't figure out the "why" he won't go yet. 

We are diving into trying Emmett on a gluten-free/casein-free diet. There have been studies found that a GFCF diet can reduce certain symptoms of autism, like meltdowns or aggressive behavior. It can take as long as six months before you see a difference, but we are willing to try it, even if only for preventative reasons. I know a couple of families that have had success on it for their child, but every case is different. We feel very strongly about not using medication on Emmett at such a young age. 

We are easing into the GFCF diet; it's crazy how many things you need to omit. I've started by replacing one food that has gluten and one food that has dairy. The dairy side of things hasn't been too bad, except for yogurt. Emmett loves yogurt. The gluten-containing foods is much harder, especially when he is as picky as he is too begin with. We've started with gluten-free bread for him. So far he's eating it no problem. The downside - super expensive. 

june - second half, july - first half.

I'm combining these two because there is not much to report. The biggest thing that happened the last half of the month was Emmett turning 5! He had a very fun day and was happy. No meltdowns or issues. Just a perfect day focused on him. We decided not to have a party with other kids. Not sure he's ready for that yet. All he really wanted to do was have cake. He didn't even ask for gifts. I don't even think he knew he was getting gifts until we brought them out. He's such a simple boy in that way. :)

^^had a great time playing with his sister :)

The fourth of July went very well. We are always unsure about how Emmett will respond to loud noises. We were concerned about going to see fireworks. We brought his noise-canceling headphones, but he didn't want to wear them. When things got really loud we kept asking him if he wanted to put them on, but he refused. He was doing fine! He was concerned about the 'booms' but never got scared. He had a blast watching fireworks and holding sparklers.

Unfortunately, Emmett had a meltdown last week. He went to a classmate's birthday party (which is so great!) last weekend. I was prepping him a few days ahead of time and he seemed pretty excited. Trisha is the one girl from his class that he took interest to. I was so happy when he was invited to her party. When we got there, Trisha was very excited to see Emmett and grabbed his hand and started pulling him over to where the other kids were. I could tell he was already getting uncomfortable. Trisha's mom had just set up a sprinkler. Trisha brought Emmett over to the sprinkler. The sprinkler turned on, shooting water at Emmett's face. That's when he lost it. He tried so hard to keep it together.   

^^just before the sprinkler turned on :(

He came running over to me crying and very upset. I tried calming him down by drying him off and putting him in my lap, but he just pushed away from me. He was embarrassed, I know. After calming down a bit, he hid in the house and wanted nothing to do with the party. Trisha's mom found some cars for him and he perked up. I was able to coax him back outside with the cars, but he just played with them at the table by himself. He watched Trisha open her gifts from afar and ate his cake on my lap. 

For a moment after we arrived at the party, I thought about running a short errand and coming back. But my gut told me to stay. I'm so glad I didn't leave. I had high hopes for this party; visions of Emmett socializing and laughing with the other kids. It was another learning experience. We'll try again next time, bud.

june - first half.

Not too much to report this half of the month, except for one big accomplishment. Emmett went pee on the potty in public for the first time. :) He even went without his seat insert. I was speechless. We were having pizza with friends and Emmett said he had to go pee-pee. Matt and I kind of gave each other the "crap, what should we do now?" look and Matt got up and told me he would try to get him to go. About 10 minutes later, Emmett runs back to the table and proudly exclaims, "I went pee pee!" I was so happy! I don't know how Matt did it, but he is able to get him to do things that I can't. We made sure to buy him a sucker on the way home. Emmett was so proud of himself. :)

Emmett hasn't gone potty at Fraser yet, but I think he's very close. His teacher has been putting glitter in the toilet to get him to go into the stall and watch it flush down. He is still sitting on the potty there, pants up, lid down, but he does well with baby steps. Not when we are in public he wants me to put glitter in the toilets. I need to remember to put some in my purse! I'm telling you, I carry some odd things in my purse...

School is now done for the year. I am very proud of all of the hard work and adjustments Emmett has had. He has learned how to ride a school bus to and from school, eat breakfast in a cafeteria, listen to his teachers, and share with other kids. He is excited for kindergarten! 

may - second half.

The second half of May has been so busy and I am exhausted. There have also been changes in Emmett's schedule, which will remain changed through most of the summer.
We did the autism 5K for the second time. This year there were 19 of us supporting Emmett and autism. I was so grateful and felt how much love everyone had for Emmett. 

^^so happy

Ethnie walked the entire time and Emmett walked half of the time. :)

Emmett had his final sessions of OT and PT. He is now on a therapy break through July. However, we definitely have "homework" to do during his break. We are excited to work with him on his "jobs" and see how much progress we can make.

During Emmett's last OT session he got to have a pool party. :) He has gotten much more comfortable floating in deeper water and keeping his balance when he can touch the bottom. He is still pretty hesitant and cautious, but better!

making a water spout with the noodle

I took Emmett to Como Zoo and Como Town to go on some rides. It was the first time he rode the train by himself. He was looking pretty sad, but once the ride started he was fine!

I was hoping he would be able to get on and off the ride by himself, but he was too scared. I know he wants so badly to be as independent as he can, but certain things are just too hard still. When all of the kids are exiting the ride and the operator is hurrying them along, it's just too much for Emmett to process in a hurry. He panics and is afraid.

He has had his eye on the fire truck ride since last summer and this year he is tall enough to ride it. Each truck has a platform on the back with squirt gun hoses you can spray on the building while the ride is going, but he just wanted to sit inside the truck. When he first came around, he had a look on his face that was mostly fear, but then he calmed down and started to smile. :)

 

School is done in a few days and Emmett will start going to Fraser five days a week. This will be good for him because he will still have a structured schedule all summer, which will help with the transition into Kindergarten. 

In June Emmett will go see Dr. Prawolski to follow up/reconnect about how everything is going for him and how we are liking the services he receives. 

may - first half.

There is not too much to report for the first half of May. The first week of the month we were in Florida, which was a delightful trip. :) Emmett did great for the most part. However, he hated the beach. Sigh. I was really hoping to have a breakthrough this year compared to last year. I bought him some snorkeling/sand socks that are made from the same material as a wet suit. He was fine walking on the sand at first, but once he felt unstable and the waves touched him, he lost it. He was upset and crying. I mostly blame myself because I think I pushed him too far the first time we took him down to the beach. I was excited and wanted so badly for him to feel the same. The second and third times on the beach were a bit better, but Emmett could only tolerate up to half an hour before he had had enough. We tried having him wear his sandals and all he wanted to do was sit on the towel; his safe haven from the sea of sand.

^^trying to outrun the wave while not letting the sand touch his feet at the same time.

Emmett also had a hard time with transitions while on vacation. The hardest transition each day was going from the pool back up to the condo. We had to prep him plenty of time in advance to make it as smooth as possible. Overall, he did very well and I was very proud of him. :)

Emmett will be taking a therapy break soon for 2-3 months over the summer. It will work out well because he will be going to Fraser 5 days per week. I don't want to make his schedule too crazy over the summer. We have fun things to do!
He has been extremely interested in letters. Not so much trying to write them, but recognizing them and singing about them (constantly). He loves the ABC song and others he has learned at school. He is also starting to recognize the letter and sound at the beginning of words. And he loves pointing to letters on the laptop keyboard.

april.

April was a blur. We had places to go, I put in quite a few hours working, and we were planning/packing for Florida. We also all got a bad cold that lasted for two weeks. :(
Emmett had a pretty extreme meltdown this month. I was the only one home with him when it happened and it lasted almost an hour. I felt terrible that I couldn't help or do anything to make things better. I have no idea what triggered it. He was really anxious to eat his lunch. I was making it and telling him it would be ready soon, but I think having to wait awhile for it made him upset ? It's so hard to tell. I believe he doesn't know what he's doing, nor remembers the meltdown after it's over. After almost an hour of bawling, screaming, hitting and flailing, he literally "snapped" out of it and picked up where he had left off before the meltdown began. He was back to being my happy, smiling boy, except he had a red, puffy, teary face. How does this happen? What do I do when this happens in public if I can't predict it? It is very confusing. Unfortunately, I feel like he has to ride it out and suffer through it. At this point in time, I have no remedies or solutions to stop the meltdowns. I hate it because I feel helpless.
Emmett started his speech therapy break. In two weeks his OT and PT break will begin and will last until around the end of July. We are hoping to see a jump in progress when he starts up again.

Teanna is still working with Emmett in the therapy pool and he is loving it. I have gone in with him too, but he seems to focus and listen better when he is alone in the pool with Teanna.

He is working on floating and being aware of where his body is in deeper water. He doesn't quite understand that when his feet are pointed down, he will touch the bottom. It's hard for him to stay calm and not panic while he's floating.

^^he looks like he's doing fine here, but he hated the way the lifejacket came up around his chin while he floated. he's normally in a boat wearing a lifejacket so he hadn't experienced that before.

^^he is working on kicking on his back and front. the noodles seem to help.

^^toy break

Lately, he has been wearing the floatie-style PFD in the pool and likes it much better because there isn't anything up around his face. He is technically too big for this style of PFD, but he's using it just so he has a little buoyancy and feels more confident in deeper water.  

^^great job bud!

Sessions with Kevin have been going great (PT). He has been putting weights around his wrists and ankles to help with body awareness. His throwing and catching skills have really improved.

^^playing soccer in the hallway

Emmett is really timid and cautious to try new things, especially if it involves an unstable foundation or height. Kevin has done a really good job with pushing him to do things (eventhough a couple of times he pushed him a little to much and saw some tears).

^^he likes having a male therapist. Kevin is the only guy in the rehab clinic! 

Emmett has been doing a much better job of doing two things at once. Here he is balancing and throwing. He also had to do a squat to pick up the balls, which was difficult for him.

so proud of you Emmett!

march - second half (1 year post-diagnosis).

There is a lot to cover in this post. Some big things happened in the second half of March!

1. Emmett caught a bad virus that was going around and he was SICK. Fever, chills, body aches, and a runny nose. He hasn't been that sick in a really long time and I felt so bad for him. He gets really quiet when he's sick and it's hard to read him. He isn't really able to describe his symptoms/feelings so I feel like I need to monitor him very closely. I also have to force medicine down his throat because he hates it so much. He was on the couch miserable for five days straight. :( He missed three days of school and two days at Fraser.

^^ He is such a trooper. I was so glad when he finally started to perk up.

2. Emmett had his first trip to the dentist! Yes, I know he is almost five and has just gone to the dentist for the first time, but it took us long enough to get him to let us brush his teeth, let alone have a stranger stick foreign objects into his mouth.

I took him to Maplewood Pediatric Dentistry, which specializes in patients with special needs. They deal with a lot of kids who have sensory and anxiety issues. Emmett blew me away with how well he did! I tried to prep him for the appointment as best as I could. I expected to see a lot of tears, but there weren't any!

It took him about ten minutes before he would agree to sit in the red patient chair, but once he did he became interested in what the hygienist had to show him.

^^ feeling the polisher vibrate on his finger

^^ it tickled a lot :)

^^ another hygienist in her autism-supporting scrubs :)

The x-ray portion of the visit was tough for him, but he hung in there. He did not like the chair being up high or the x-ray machine. It was also difficult for him to put the forms in his mouth.

Lastly, the dentist came in and checked him out. She said his teeth were very healthy and had perfect spacing! She also said we were doing a good job helping him brush. Man, that was a relief; hopefully his lifetime of dental visits will all be this easy and simple. He did so well at his visit; the ladies let him choose three prizes out of the prize drawer. :) Great job, bud!

3. Therapy has been a little tough the past couple of weeks. Zena and Teanna both agree that a "therapy break" is in order soon. It is very common for kids to hit a wall or plateau after about a year of therapy because they get burnt out. Emmett has been showing signs of needing a break. A therapy break usually last 3-4 months, then when the child comes back there is usually a jump in progress. So we will be doing one more session with Zena and possibly eight more sessions with Teanna, then start the break. It's actually coming at a good time because he will have the summer off.

OT just got really exciting because this week Teanna decided to start some water therapy. She will be doing this with him for the next six to eight weeks until he takes his break. This therapy pool at Children's is the most amazing pool I have ever seen! The floor is like an elevator, so you can make it as deep or shallow as you want. It is also a treadmill, which is mostly used for physical therapy patients.  If that wasn't cool enough, this pool also has underwater cameras in the walls of the pool so therapists can record the patient walking, etc. And it has jets. Nice, huh?

This first session in the pool was just getting familiar with everything. Emmett got pretty scared every time Teanna lowered the floor the make the water deeper. He also didn't like the jets at first, but got used to them.

Normally, when I take Emmett to a pool he gets very amped up and cannot control his splashing or throwing toys. But he seemed very calm in the therapy pool. I'm sure having the quiet atmosphere and no one else sharing it with him helped a lot.

Teanna was trying to get Emmett to swim his toy toward the jets. He kept his distance.

When Teanna starts doing exercises with him in deeper water she wants me to come in too. Then I can learn the exercises to do with him over the summer.

^^this is what the floor looks like all the way up. so cool!

4. Emmett had his school conference and it went well. His teachers are seeing more signs of socialization and being interested in socializing. He is also trying much harder to write his name by himself. :) He still needs a lot of prompting and motivation. He is still unwilling to try to go potty at school. 

We found out that Emmett got into the school we want him to go to next year! He will be going to EXPO Elementary and I am so excited about it. This school has an amazing autism classroom that will be adaptive with the mainstream kindergarten classroom. He will be in the mainstream classroom throughout the day for periods of time, then back to the autism classroom. I am so grateful he will be getting the support he needs to thrive in school. This school also has an awesome principal and a strong community feel to it. So excited for him!

6. I attended a toilet-training workshop at Fraser that was put on by the Autism Society of MN. It was very informative and worth going,  but I didn't leave with the feeling of positivity I was hoping for. I actually left feeling very overwhelmed, like I have a daunting rode ahead of me in helping my son become fully potty trained. The professional was very honest and real about everything; saying that it could take years, and that we should prepare ourselves for that. 

7. It has been one year since Emmett was diagnosed with autism. Much has happened this past year. I feel like Emmett has gotten "more" out of life this past year than any other year because doors are opening for him and he is making progress. In general, he can function better, which gives him so many opportunities. I think about all of the therapy and new experiences he has had that have helped him this year and I feel so grateful. I feel grateful to know about his autism so he can start getting more out of life.

Symptoms of autism that Emmett displays:

• 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 for others (*but recognizing when someone is upset)
• Unable to make friends or uninterested in making friends (*willing to play next to other kids)
• Repeats exactly what others say without understanding the meaning
• Doesn't always respond to name being called
• Refers to people in third person and mixes up pronouns
• Doesn't start or can't continue a conversation
• Doesn't use toys or other objects in pretend play (*but copies Ethnie in pretend play)
• May have a good rote memory, especially for numbers, letters, songs, TV jingles, or a specific topic
• Rocks, spins, sways, walks on toes, flaps hands (stimming)
• 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
• Sensitive to smells, sounds, textures, and touch
• Unusual use of vision or gaze - looks at objects from unusual angles