Tuesday, November 25, 2014

week 35.

Therapy has been going well. I feel like Emmett is hitting a wall because he has been tired at the past couple of sessions. It may be because he recently got over a cold and catching up on sleep ? Not sure, but in speech he has been lying on the floor he's so tired! He also fell asleep in the car on the way home and slept on the couch for an hour, coat and all! His brain is working really hard. 
Teanna worked with him on jumping from a high point to the floor. She set up a big thick mat and had him jumping onto a bean bag. He was scared at first, but after doing it a few times he liked it. Emmett has a hard time jumping with both feet off the floor at the same time. He normally does hops instead of a true jump. They also worked on finger painting and trying to keep the paint on his fingertips as long as he can stand. He normally wants to wash his hand after each dip into the paint, which can be exhausting in itself. He was doing pretty well this time. 
At home, we are working more on dipping foods, like dipping a cracker into yogurt and eating it. This mixes textures and tastes. The goal is to move up to ranch dip or ketchup so he can try dipping veggies or meats. We are also mixing raisins in his yogurt to mix textures. 
We are working on Emmett staying by the table during meal time. His food can only be on the table, but he walks around the table or runs into the living room between bites. Teanna feels he is doing this because meal time is stressful for him so he feels like he needs to walk away for a bit. He is also a mover in general. Teanna wants us to try making a 'perimeter' around his seat with masking tape and telling him that if he feels he needs to get out of his chair, that's fine as long as he stays within the space we made for him. We can slowly make this 'space' smaller and smaller until he is staying in his chair. This idea seems silly, but I'm willing to try it if it helps. Plus, we can take masking tape anywhere to family dinners. :)
I had Emmett's first parent/teacher conference this week. It lasted two hours and was pretty draining. We went over the progress report, tests, and the IEP goals. We didn't make any new goals because Emmett is still working on the goals that were put in place at the start of the school year. The progress report and test scores were hard to look at because there isn't much development yet. He doesn't understand concepts like rhyming, alliteration, or the direction words move while reading. He doesn't understand most open-ended questions and will repeat the question back to his teacher instead of trying to answer it. Emmett has not made any friends yet. I think this was the hardest part to talk about. I was hoping after being in school for two months he would try to socialize. Not the case. He likes hanging around his teachers, but avoids the kids. He will play by himself unless an adult pushes him to try and play with someone. This makes me so sad. I believe his classmates are trying to socialize with him, but he is not reciprocating. However, he has been touching kids' backs, hair, or face, which is a way he's communicating, but it's not appropriate in the classroom. 
There are things his teachers are impressed with. I should have stated these things first! He knows all upper-case letters and most lower-case ones. He can count to 20 and knows what each number looks like written down. He knows 3 out of 5 shapes. The other thing his teachers are impressed with is how observant he is. He knows every child's name in his class and where they sit in morning circle. He knows right away who is absent before his teacher takes attendance. I think this is really neat. I just wish he could take his knowledge and concern for each child and use that to socialize. Hopefully, he will soon. I can't wait for the day when Emmett asks me if so-and-so can come over to play.

Thursday, November 6, 2014

week 33 & 34..

These last two weeks have been challenging. Therapy went great; school has been going well, but Emmett has had some struggles at home. :( He has been regressing with potty training. I always had a feeling potty training him was going to be hard, but not this hard or frustrating. Matt and I have been pushing Emmett harder to try going #2 on the potty. It's getting to the point where changing his diaper is such a pain; we practically flip a coin to decide "who's turn it is". Unfortunately, we pushed too hard for him and he has been too scared to tell us when he needs to go. He has been peeing and pooping in his pants multiple times a day. When it happens he feels very ashamed. At first, Matt and I were so frustrated because we feel he is way too old to be having accidents. We were raising our voices at him, which just made him feel even more scared. We took a step back to reassess the situation and now realize his fear of toileting is worse than we thought. It breaks my heart knowing how scared he is to do something so necessary. I guess our version of baby steps are too big for Emmett to keep up with. 
So we eliminated the new plan and have gone back to just going pee on the toilet with tons of praise. We can tell he is so much less stressed and by looking into his eyes, he's saying, "thank you for understanding." We have added one baby step; when Emmett needs a diaper to go #2, we bring him into the bathroom with a toy and have him go in there. He has been very cooperative with this and is doing great with the new rule. I think I need to consider that progress. :)
Next week we will be having Emmett's first school conference and I am a bit nervous. We will be revising his IEP and going over any progress or lack of progress he's had. 

Wednesday, October 29, 2014

week 32.

This week was about the same as last week - successful and cooperative. It was the last week doing OT with Irene (OT sub) and things went really well. I think Emmett has grown a bit attached to her ? They worked more on dipping different foods and mixing textures. We also working on those things at home.  We have been letting Emmett put raisins in his yogurt and he has been trying it. Irene also had Emmett play in the bean bin. He didn't want to sit in it, but he played in it with his hands.
Speech with Zena always seems to go well. Emmett really likes her and goes along with anything she suggests. They have been working on following directions. She has different magnet boards with figures that she uses and has Emmett put the figures on top of ______ or under ______. He is still learning where these places are. He is doing a nice job listening to Zena.
Emmett has been using some nice sentences at home! Full and descriptive. He is also trying harder to describe what he wants or sees in better detail. That brain of his is working so hard! I tell him each day how smart and special he is.

Tuesday, October 21, 2014

week 31.

Emmett did really well at therapy this week! Unfortunately, there were two speech therapists out and there was another patient who needed Zena's services, so Emmett did not get to see her. But, a different speech therapist sat in on the OT session and they basically team taught Emmett. At first, Emmett was overwhelmed by all of the eyes on him, but he cooperated nicely. Erin (speech) worked on saying complete sentences the entire hour. Irene did massage with lotion and brushing, then worked mostly on feeding. Emmett did so well and was tolerating a lot! He ate pancakes with syrup, licked a chicken nugget, and touched a green bean. He also ate yogurt with raisins and cheerios mixed in. I was so impressed with my buddy. :) After eating, Emmett played in the rice bin with cars. He gets really excited doing this and has a hard time keeping the rice in the bin.
At home, we are working on eating more with utensils. Emmett is trying really hard and is doing great. He is also walking around singing songs from school. He doesn't like it when we notice he's singing so we try to ignore it, but it is so cute. I love listening to him and knowing that he is learning.

Tuesday, October 14, 2014

week 30.

Things went really well this week. I was a little worried because both of Emmett's therapists were gone and had to see substitutes. Erin was his speech therapist this week and the session went great. Emmett has worked with Erin once before so he remembered her. They worked on saying consistent 4-word sentences. Emmett's OT sub is Irene, whom he will work with for a couple more weeks while Teanna is on vacation. Irene is great and Emmett seems to like her. They played a game with magnets and worked on drawing. Irene also did a lot with food, which Emmett tolerated well. I was really proud of him doing something stressful with a new therapist! He was such a trooper. 
Emmett has been really impressing us with his speech this week. He has been saying some great complete sentences and questions. He is also talking much more while he plays and is using his imagination. So fun to watch!

Saturday, October 11, 2014

week 29.

There is not much to report this week; it's been pretty basic. In speech, Zena said Emmett had great eye contact and interaction. In OT Teanna helped Emmett put together a race track that was like a puzzle. He was patient and cooperated. Headphones are also going well. Emmett seems completely used to wearing them everyday and making it part of his schedule. 

Friday, October 3, 2014

week 28: 6 months post diagnosis.

Emmett had a good week. Both school and therapy went well. We noticed some excellent (and longer!) sentences from him, which makes us excited. We have seen him engage in some imaginative play with his cars. He has also been more willing to try and take off his shoes and socks.
Every six months I will be listing Emmett's symptoms of autism as I did when he was first diagnosed. My hope is that every six months this list gets smaller and smaller, or the symptoms at least become less noticeable.

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 for others (empathy)
  • unable to make friends or uninterested in making friends
Communication differences

  • repeats exactly what others say without understanding the meaning
  • doesn't always respond to name being called
  • mixes up pronouns
  • can't continue a conversation
  • doesn't practice much pretend play
Behavioral differences

  • flaps hands, 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
  • sensitive to sounds, textures and touch
  • looks at objects from unusual angles

Sunday, September 28, 2014

week 26 & 27.

Good week for Emmett, but not too much to report. It has almost been six months since his diagnosis, which feels weird. It still feels new and overwhelming, but at the same time like I've never known any different. We are still waiting to see if Emmett can get into a life skills program with Fraser. Fraser has a reputation of being the best place in MN to get services for autism. The wait list is long, to say the least.
Therapy was successful this week. Teanna was able to calm Emmett's body down really well so he could cooperate better. Now that he is going from preschool to therapy on Wednesdays, it's harder for him to cooperate and keep his cool. He tried a different therapy swing, but didn't last long. But he did some painting and Teanna got him to finger paint! At first he would hardly touch the tip of his finger to the paint, but after about 10 minutes he was dipping his finger into the paint and having fun. However, he wanted his hands wiped off between every dip of his finger. After trying finger paint, he has been more tolerant of touching shaving cream at home. He has covered his entire hands in it a few times for a few minutes. Thumbs up!
Also, Emmett has tried riding the bus home from school two times. :) There is an aide who sits with him and he is the first stop. The bus also drops him off directly in front of our house, which is so great. We are so proud of him for being so brave this past month. :)

Week 27 hasn't been the easiest because Emmett is battling a fever/cough. :( My poor buddy had to miss two days of school. It was crazy how hesitant and clingy he was going back after only missing two days. He needs consistency. Even though Emmett wasn't feeling the best, he was still cooperative in therapy. Teanna informed us that she will be gone for three weeks (eek!) in October and there will be a substitute OT. I hope Emmett does okay with the switch.
We have been reading a new book Go Dog, Go! to Emmett and he loves it. It is a very simple book to understand and uses many of the verbs that Zena is working on with him. He even tries to read it himself, which is super cute. He also loves to read The Very Hungry Caterpillar and Brown Bear, Brown Bear.

Wednesday, September 17, 2014

week 25.

Emmett had a very tiring week, but he was such a trooper. He has been adjusting to his new schedule of preschool every day and going to therapy on Wednesday afternoons (which means nap is skipped). Hmph. But I think he is really enjoying the change. Soon, we are going to try sending him home from school on the bus. 
Therapy was harder this week because he was so tired to begin with. He ended up getting very upset during OT and even tried hitting Teanna. :( He wasn't very cooperative with her. Then in speech Zena decided to end the session 20 min early because Emmett was laying on the floor exhausted. He was done. So therapy may be hard for the next couple of weeks because of the new schedule. 
Emmett has been touching new foods and even putting them in his mouth! He spits them out right away, but it is progress. We've gotten him to put tomato, green pepper, carrot, chicken, corn, spinach and cashews in his mouth. 
Other big news around here- Emmett has been sleeping overnight in underwear with no accidents! The past few nights have been successful!

Sunday, September 7, 2014

week 24.

Another successful week for Emmett. Zena is still on vacation so he saw a different speech therapist, named Erin. Zena requested her for this week and she was awesome. Emmett felt really comfortable with her and cooperated the entire session. They mostly worked on using full sentences with verbs and proper nouns. 
OT went well too. Teanna was able to get Emmett to try out a new therapy swing. He hasn't liked this in the past, but this week he was tolerating it. Swings are hard for him because of his proprioception challenges. We have also been working on swinging at the playground and have been able to get him to swing three different times. Emmett also tried playing in a bounce house, which is similar to a trampoline. He has been afraid of these, but tolerated it for a few minutes laying down. Ethnie tried to get him to stand up and jump, but that was to scary for him. 
Emmett also stared preschool this week! I was so nervous about this. He seemed excited to go, but did not want us to leave. We stayed with him during breakfast and while he walked to his classroom. His teachers said he did really well for his first day. He has gone twice so far and both days went great. Therapy will still be on Wednesdays, but in the afternoon instead. 

week 23.

Emmett had another good week. He is adjusting to his headphones well and we are only seeing positive results! There was no speech therapy this week. Zena is on vacation for two weeks. Emmett will miss her. Teanna worked with Emmett on gross motor skills. She had him climb up a pile of matts. Teanna noticed that when Emmett climbs, he doesn't curl his toes forward to use them for pushing upward. He tries to climb with the tops of his feet. I had never noticed this before. So they worked on climbing the correct way. They also played in the bean pit with objects. 
Emmett is also prepping for preschool. We have been taking him to visit his classroom to make the transition easier. I am really nervous and worried about how he will act around the other kids. I hope he doesn't get too overwhelmed and become aggressive. I know he wants to behave and get along with others. 

Wednesday, August 27, 2014

week 22.

This week was a big one for Emmett. :) He started using his new therapeutic listening system and has been really cooperative! We are so grateful to be able to have this system for Emmett to use at home. It is a blessing to be able to take advantage of such technology. We think it will greatly benefit him and help him to utilize all the parts of his brain. It's a pretty slick system; after it came in the mail we took it to Teanna and she set everything up for us. She assigned two playlists for him to listen to each day. In 2-3 weeks she will assign new playlists. Each playlist has different auditory exercises that help the neurodevelopment of his brain. It essentially "wakes up" the areas of his brain that he is unable to use. 
I feel like I am already noticing differences in him. One of the playlists causes him to talk to us nonstop! It's pretty funny. We have also noticed him singing more in front of people (he normally never sings in front of us). So some wheels are starting to turn in that brain of his that weren't turning before...
Emmett is still adjusting wearing the headphones outside of therapy. I think he was pretty confused at first because he associates the headphones with Teanna. He has to wear them for 30 minutes during each session, which is hard for him. Sometimes he gets frustrated and pulls them off, but if we set a visual timer that he can look at, he does better. He can watch and see how much time he has left. 

This week in speech therapy, Zena wanted to try the session without me in the room. It went really well. Emmett has been getting frustrated and shutting down early during speech. When he does this he buries his face in my lap and wants to give up. This time he lasted the entire hour and was focused and happy. I was a bit sad because I like to observe the session, but I can see how that can be distracting for him. 
We went and visited Emmett's school and were able to talk to his teachers as well. We are meeting with them again, along with the special ed team, on September 2nd for a welcome meeting. Emmett seemed pretty comfortable in his classroom, but that may change when the 20 other kids are are in there. We are going to visit the school a few more times before he officially starts so he can make the transition easier. 

Sunday, August 17, 2014

weeks 20 & 21.

We have been noticing great improvements in Emmett's speech. Both family members and friends have noticed as well. He is speaking much better full sentences and makes more of an effort to describe things. :) We are proud of him! He always speaks the most with Ethnie. I love listening to them have a conversation. Ethnie makes him talk to her and loves to correct him (imagine that), but he doesn't seem to mind when she is the one doing it.
Next week at speech therapy Zena wants to try having Emmett in the room alone with her. The past two weeks he has been losing interest and it may be because I am there. Zena thinks if I stay in the lobby he might stay focused longer. I admit, I'd rather be in there so I can take notes on the session, but I understand.
OT has been going pretty well. Teanna is trying to get Emmett to sit on a different therapy swing, but he won't do it. He wants to use the same one every time. Change is hard for him AND he is stubborn; it's a bad combination. Hmph. Teanna is also working with Emmett to copy what she draws. We are trying to get him to draw the basic symbols he needs to start writing letters.
Yesterday, Emmett had a bad meltdown at a party we were at. We pushed him too far and didn't pay attention to the signs he was giving us, trying to tell us he needed to leave. He ended up having an ugly meltdown in front of everyone, which ended up in Matt carrying him to the car screaming, kicking, hitting and flailing. Yikes. However, he hasn't had a bad meltdown like that in a while. We are getting better at recognizing his triggers.
Good news - We are able to get Emmett a therapeutic listening system, which just might come in the mail tomorrow! We are so grateful to be getting one of these and can't wait to get Emmett started on it. I think it will really help with overstimulation.

Tuesday, August 5, 2014

week 19.

This week wasn't the best as far as Emmett's progress is concerned. Ten minutes into his speech therapy session he shut down and didn't want to do anything Zena offered him. He kept burying his face in my lap and shut his surroundings out. Zena said this happens with many of her patients where they become tired of therapy and "hit a wall" in progress. Some kids need a week or two break. Hopefully, Emmett just had a bad morning and will be back to his cooperative self next week. Because of his shut down in speech, OT did not start out well. Teanna had to dim the lights and calm him down with a massage. He responds very well to this. It's like hitting the reset button for him. Emmett spent the majority of the session on the therapy swing. He really relaxed and even let go with both hands while swinging. This is a good sign because it means his brain is processing what his body is doing while moving through space (proprioceptive skills).
I feel like Emmett has been fighting me lately on the things he needs help with. He hasn't been cooperating while I try to brush him and do joint compressions. He has also been asking me to put a diaper on him instead of wanting to go pee on the potty. I do not know why he is doing this. Structured eating times have been difficult as well. I have read a lot of material on autism in the past four months and many times I have read that I will want to give up trying with my child. However, immediately following that statement, the statement that always follows is DO NOT GIVE UP ON YOUR CHILD. Some days are harder than others and I need to keep repeating that statement in my mind each day. I cannot give up on my child.

Thursday, July 24, 2014

weeks 17 & 18.

I have been a bit behind on everything lately. Stress combined with a busy schedule does that to me.
Last week therapy was very successful! Emmett was happy and compliant the whole time. He was dishing out full sentences left and right with Zena and didn't throw a thing! He loved the games they played together and she didn't need to prompt him very much. She was very pleased with him and the session.
OT went great as well. Teanna gave Emmett a massage and dimmed the lights again. She also had him do more therapeutic listening. He was very cooperative. She worked on motor skills by having Emmett clap the bubbles as she blew them. She wanted him to clap his hands evenly together. Then she had him work on a Light Bright toy (loved those as a kid!), which was great for fine motor skills. I was also able to talk with a financial counselor about options for us through Children's after our insurance stops.

This week Matt had to take Emmett to therapy on his own because I was in South Dakota. So I am documenting based on what he told me. Emmett did not do as well this week in therapy. Matt thought it could have been because I was gone or because he had to go pee and it was bothering him. Speech went okay, but he only made it through half of OT before having a meltdown. He became overstimulated trying a new activity where he had to blow through a straw to move a golf ball across the floor. He also wasn't as tolerant of the therapeutic listening.
We may have an opportunity to get our own therapeutic listening system to have at home. This would be very beneficial for Emmett and would be a big blessing for him. We are working with Teanna to have her write up a grant to get approval for one.
Matt also took Emmett to his appointment at Fraser. They ran a short diagnostic on him, asked a ton of questions and made Matt fill out another long questionnaire. These never end. The appointment went well and now we have to wait until there is some availability at Fraser for Emmett to have a spot there.    

We received the psychology assessment report in the mail this week. Dr. Mary did diagnose Emmett with autism like we expected. The report describes in detail why she made this diagnosis and gave us his IQ test results. This is hard to look at, as it was when he had an IQ test through special ed. I am trying not to focus on the numbers right now.

Sunday, July 13, 2014

week 16.

A quick story from last weekend (4th of July weekend):
On Saturday morning, one of Matt's friends from high school was in town and asked if we could watch their four kids for a couple of hours. That means we had six kids in our rather small home. It was definitely overwhelming, but they all played really well together. The reason why I am sharing this story is because their 6-year-old daughter is also autistic (something Matt casually mentioned to me 10 minutes before they walked in the door. Yikes!). So we had the opportunity to have two kids on the spectrum in our house. Kira is much different from Emmett. I would say she has great language development for her age. She also didn't seem to have any sensory issues. No eating issues either. She was also potty trained. The only thing her mom told me not to do was to wind up a music box. That seems to be the only thing that causes her to melt down. One major difference between her and Emmett is that she cannot stay still and snoops and digs through everything. She has to know what's in every drawer, behind every door, and under every chair. We had to keep a close eye on her! We didn't want her to get into anything that could hurt her. The other thing is - she runs. We took the kids outside to play and Kira ran off into the street many times! Matt had to run after her down the block a few times and guide her back to our house. I think she is just so curious about everything. Kira is a very sweet girl and I'm glad I had the chance to get to know her a bit.

This week has been devastating. On Monday Matt lost his job. The college he worked at closed 12 locations nationwide due to a funding freeze. I've been sick about it. So our insurance ends at the end of July. I am so scared that Matt isn't going to find a job by then and Emmett will have to stop therapy. I don't want him to lose all of the progress he's made. Of course, I'm also worried about money. I anyone is reading this, please keep us in your prayers. Pray that we will be guided in the right direction.
Therapy went very well on Wednesday. Zena is continuing to work with Emmett on using verbs and describe objects. He cooperated the entire time. She also worked with him on names of food. They put together a food puzzle, which Emmett really likes.
Teanna blew me away this week. She is working on ways that work to calm Emmett's body down. This week she did a deep pressure massage on Emmett while he was sitting in a bean bag. She also turned off the florescent lights and turned on some soft yellow light. This combination worked like a miracle. Emmett sat quiet as a mouse in that bean bag while Teanna massaged his arms and legs. She also tried massaging his face, but he did not like that. After the massage, she went on to doing an activity with aqua sand in water, which is a cool sand/putty mixture. Emmett is normally has a very difficult time controlling his excitement while playing in water, but this time he was much calmer. That massage helped to calm his body down so he could play in the water and not get too overstimulated. By the way, he wouldn't touch the aqua sand with his hands, only with a spoon. So Teanna wants us to try massages at home before we take him out to overwhelming places. I think this will work really well, as long as I can pull it off like she did!

Thursday, July 3, 2014

week 15.

It has been just over three months since Emmett's diagnosis. Although Emmett hasn't had much medically evident progress with his autism symptoms, I know he has learned many new things and has started to get used to the "new normal" in his little life. He has had a lot of adjusting to do and is cooperating nicely. Unfortunately, the adjustments have just begun and he will have many more once fall hits.
Personally, I have learned more about my son in the past three months than I have in the past three years. I have been reading, listening, watching, thinking constantly about him and his needs. I have also learned much more about myself as a mother. My understanding has stretched farther than ever before and the love I have for my kids grows deeper each day. It amazes me how my heart is able to keep opening up more and more and pour out more love for them.
This week was different from our usual schedule. Emmett had his first feeding therapy appointment at Children's. The team consisted of a dietitian, a nurse practitioner, a speech therapist, an occupational therapist, and a student volunteer. Just having that many people in the room was overwhelming enough. It took almost two hours and was a bit stressful for him because the team pushed him to do things with food that was uncomfortable for him. They didn't force him to eat anything; just pushed him a bit, then backed off. They tried to get him to try some new snacks and observed how he eats and how much he can tolerate having foods he doesn't like near him. The dietitian talked about what Emmett needs in his diet and how we can better get him those nutrients he is lacking. She also recommended ways we can help him become more comfortable with new foods. What they didn't explain to me is how to get Emmett to stop gagging on foods with texture. Maybe that will come at the next appointment ?
Feeding therapy will not happen each week. The nurse said she will most likely have Emmett come back for another appointment in three months or so. In the meantime, I am suppose to communicate his feeding needs with his two therapists. Because the feeding clinic involves a speech and occupational therapist, we could not see his regular therapists this week. Insurance would not allow all three in one week. Lame. However, Emmett did get to chat with them for a few minutes.    

Saturday, June 28, 2014

week 14.

Not too much to report this week. Therapy went well. In speech, Zena is working on getting Emmett to use description words while he plays. He needs a lot of prompting, but he is trying.
Teanna (I just realized this week that I've been spelling her name wrong) worked with Emmett on the therapy swing for awhile. She tried to get him to go into one that was bowl-shaped, but he was too afraid. She also worked on puzzles with him, which he does not like. He gets very frustrated and wants to stop. He also does not like having to take the pieces apart and put them away. Not sure why this bothers him so much, although Teanna said that is normal behavior. The other thing Emmett got to do was play with different textures. He played in a rice bin and then with putty. He was hesitant with the rice, but seemed to be okay with it. But he loved the putty. He was sticking beads in it and pulling it apart.
Emmett's birthday was on Friday and it was a great day for him. The only time he got upset was when he had to stop playing with his new toys and head to bed. I think he would have stayed up all night playing with his new gifts. He is very grateful for them. :)

Sunday, June 22, 2014

week 13.

This week was hard for me; I'm not going to lie. Emmett was a handful and I felt like I didn't get any kind of a break. I am exhausted. Most of the time I feel as if I'm treading water and I can barely keep my chin above water; while trying to dodge the waves that slosh over my face. I love to swim, but this is difficult. Many people don't understand the definition of 'exhausted'. Most people just think it's another word for tired, but it actually goes beyond the level of tired. It happens slowly, over time. It affects mind, body, and spirit. It wears on you and begins to make you dull. Exhaustion has affected me in bizarre, often embarrassing ways. Auto pilot kicks in, and that becomes your new awake. If someone tells you they are exhausted, please don't just tell them to go take a nap. They need much more than sleep.
 Emmett has been doing a lot more stimming lately. He cannot control his excitement. Hand flapping, hopping up and down, and making loud high-pitched giggles are just a few of the things Emmett does when he is happy. Although it may appear cute, it becomes a problem when we are at public places, such as a pool. Emmett gets so excited being in the water and watching the other kids, he begins splashing everywhere and throwing toys. Even though he isn't necessarily splashing or throwing at the other kids, it still happens and people get mad. This week we went to the pool twice and I had many 'looks' from other moms and one mom actually came up to me, requesting that I make my child stop his splashing and throwing. The problem is, no matter what consequence I give Emmett, he does not learn from it. I think his actions are out of his control.
With that said, Tianna (OT) tried some methods on Emmett to try to calm his body down, such as 'brushing' his body with a soft silicone brush, joint compressions and deep tissue massage. Trying this methods before we go out in public might help with keeping his body calm. This can make trying to get out the door even more challenging, especially because I'm not used to doing these things. We will learn more about these methods next week.
Speech therapy went fairly well this week. Zena is beginning to have Emmett try to describe things that he's doing while they play.
On Friday, Emmett had the second part of his psychology assessment with Children's in Mpls. Aside from one meltdown, the assessment went really well. Dr. Mary, the psychologist (not the friendliest, by the way), performed an IQ test along with others. Now, we wait for the results. She wants him to have another assessment in one year.
In addition to the assessment, we had Emmett's 3-month follow-up appt with Dr. Amy at Children's. She asked us how intervention treatments were working and wanted to make sure we were getting all of Emmett's needs met. She is really nice and helpful. We need to go back and see her in 6 months.

Saturday, June 14, 2014

week 12.

Therapy went great this week! And now that Ethnie is done with school, she was able to come too. I think she had just as much fun as Emmett did! She was able to join in on the activities with him. In speech, Zena continued to work on using verbs and using words to describe what they were doing. They did this through games. She also worked on him slowing down to listen and process what she says before he does anything. This can be hard for him when she is holding toys that he wants to grab. Emmett cooperated the whole time and was happy (and laughed a lot).
Occupational therapy with Tianna was very interesting to watch this time. I am really learning a lot about how the brain processes things and how the body reacts to how the brain processes anything we are doing. Tianna did some deep pressure joint massage and "brushed" his body with a rubber-bristled brush. These methods are good for calming the body. Both Ethnie and Emmett rode on the therapy swing together. They loved this and I think Emmett felt safer this time because Ethnie was on it with him. He seemed "distracted" by her so he wasn't worried so much about holding on or swinging higher, which is good! Then Tianna moved on to blowing bubbles with straws and painting with shaving cream. Emmett got pretty comfortable with the shaving cream and started to touch it with his hands and put some on his nose. He tolerated it for about five minutes then wanted it washed off immediately. He preferred using the paint brush. This activity is going to help him to slowly tolerate getting messy. The goal is to make the painting utensil smaller and smaller, and eventually skip the utensil all together. While Emmett was doing these activities, he was also engaged in therapeutic listening, which was fascinating to learn about! Listening to music is the only way we can utilize all the parts of our brain at the same time. Therapeutic listening is a form of auditory intervention and helps with sensory processing. The special headphones used make the music electronically modified to highlight the parts of the sound spectrum that naturally trigger attention and activate body movement. It also focuses on organized rhythmical sound patterns inherent in music to trigger the self-organizing capacities of the nervous system. It is amazing! Tianna had me put the headphones on and listen as well. For a normal-functioning person, the way the music is played seems strange and can actually make you sick. I could feel a headache coming on after listening for only two minutes! But for someone with sensory processing issues, it helps them do things easier and better.
The listening system Tianna is trying on Emmett is called Vital Links and here are things therapists have seen improvements in:
  • sensory modulation
  • posture and movement
  • attention
  • improved social interactions
  • increased engagement in the world
Tianna is going to keep trying therapeutic listening with him each week. If we see improvements, she may recommend getting our own system to have at home. This would be amazing, but the system is very expensive.
On Friday, I had an appointment with Fraser Center, the most recommended clinic/school in MN for autism needs. The waiting list is very long, so I am starting this process now. Fraser has amazing day treatment programs for children with autism, one of them being a life skills program that I am pushing for. The first appointment was just for me and Kent, the clinician who will be working with us. Tons of questions asked, medical info to exchange, questionnaires to fill out, and goals for Emmett. The next appointment is set for July 1st, where Emmett will be given an assessment to see what Fraser can offer him. It's a long process, but I'm hoping within six months he can begin services there in addition to therapy with Children's.
Friday evening, Emmett and I went to a wedding reception at a country club. Matt and Ethnie were camping so I had to bring him with. I tried to prep him as best as I could throughout the day. Once we walked in the door and he saw all the guests, he got upset quickly. He stopped moving, started hitting me, and wanted to be held for a good 20 minutes. He was having a very difficult time, which made it impossible for me to socialize. When we found our seat at the table I gave him a snack and his cars, which helped a bit. Then I noticed on his face he had three patches of raised red bumps that he kept itching. At first I thought a mosquito might have been in the car biting him, but these didn't look like mosquito bites. Towards the end of the reception, Emmett was more calm and the bumps started to go away. By the time we got home, they were gone. I did some research and figured out that Emmett broke out in hives because he was so stressed!! I didn't see any bumps anywhere else on his body after we got home, but that may have been because they had already gone away. I looked up images of rashes and these bumps were hives. I also did some research on hives related to autism and found some articles/blogs about children with autism and getting hives because of stressful situations. I felt so bad that he was stressed out to the point of having a physical reaction. We will not be making him go to any receptions or large parties any time soon. He is not able to handle it.

Sunday, June 8, 2014

week 11.

This week was full of new information about Emmett and I'm feeling overwhelmed. I'm trying to take deep breaths and take care of only what I have control with. It's hard for me to wait and take baby steps, in general. If there is an issue in my life I want it resolved NOW. That is impossible when raising a child who is newly diagnosed with autism. Making progress in baby steps is the only option. I think I am learning a new definition for the word patience.
Emmett had meltdowns in both speech and occupational therapy this week. It was the first time he's had one in therapy. Poor bud. He was getting frustrated in speech about putting together a puzzle and I believe that is what triggered the meltdown when he got frustrated a second time. He ended up kicking the game he and Zena were playing and it exploded, game pieces flying everywhere. He was pretty much done with his speech session at that point. He couldn't handle anymore.
In OT he got upset with Tianna when she tried sharing toys with him. He was batting her hand away and trying to tell her to move out of the way and stop touching the toys. Tianna continued to get him to share with her and it got a bit better. She mostly worked on oral motor skills with him. She is observing him doing different things with his mouth to see if he is using his tongue normally, like while eating his yogurt or a sucker. He tends to keep his tongue towards the back of his mouth instead of moving it from side to side or forward in a licking motion. She also worked with him on blowing with his mouth, which he liked. He isn't able to blow with his mouth well because he doesn't pucker his lips enough. They were blowing bubbles with straws in a bowl of soapy water. Emmett mostly wanted to splash with his hands.
Tianna also shared a lot of information on the vestibular system in the ears and how the brain processes how that works. This has to do with space, balance, and control of what is going on around you. Many times children with autism process this differently and can affect how controlled and safe they feel in their environment. Emmett seems to be particularly sensitive to this.
On Friday, we had another meeting with special education and the team informed us that Emmett has a spot for PreK at the Linwood Monroe school in St. Paul. This is good news! There are only two schools in the district that offer the special ed PreK program he needs, one of them being really ghetto and rough, and I was worried he wasn't going to get in to the nice one! But he did, and I am grateful.
The second half of the meeting was spent going through the evaluation report from Emmett's assessment with the special ed team. This was difficult for me to read through. Although I am very hopeful and have been told Emmett has a lot of potential, reading through his report verifies that he could have a long road ahead of him. His test scores are far below average and he is functioning 1 1/2-2 years below his age level. However, the special ed team told us not to focus on these numbers because Emmett is still so young and much can change in the next year.

Saturday, May 31, 2014

week 10.

Emmett had his first appointment of occupational therapy on Wednesday. It will be each Wednesday directly following speech therapy. His occupational therapist's name is Tianna and she is really nice and has a lot of experience. Emmett's first visit with her was a little tough because he was already tired from speech. He is going to have to get used to doing two full hours of therapy in one shot. Tianna spent most of the session getting to know Emmett. She showed him the big therapy swing, played in the bean box, put together a puzzle and played catch. While playing their games, Tianna noticed Emmett may have issues with depth perception. She is going to look into that more next week.
We are still waiting to get our assessment back from special education in the mail. Once we get that we will know more details about preschool. We are pretty confident that he will get a spot in a good school. Our fingers are tightly crossed!

Saturday, May 24, 2014

week 9.

A few good things happened this week:
  • Emmett will be starting OT next week, once per week directly following speech therapy. So he will be in therapy for two hours every Wednesday morning.
  • Speech therapy was the one thing that didn't go the best this week. Emmett was only engaged for about 20 minutes, then started having a hard time. Zena said some days will be like that.
  • I set up an appointment in June to talk to someone at Fraser about services in their day treatment center. The wait is very long so I want to get started with the process right away.
  • We met with Mary, the psychologist at Children's in Minneapolis for the first part of Emmett's psychological assessment. We are doing this mainly for insurance reasons. This appointment was mainly directed to Matt and I. She asked us a ton of questions and observed Emmett. The second appointment will be on June 19th. One test she will perform is an IQ test and I am nervous for that one. Dr. Mary reassured us that an IQ score for a child is much different than one for an adult, and that we should not worry about the score at all. It can change many times as Emmett progresses. 
  • I had the amazing opportunity to attend a presentation by Temple Grandin and I got to meet her!!! I was a sponge, soaking in all that she had to offer. She even signed her movie and a photo of Emmett for me! The full story and photos are on my family blog.

Thursday, May 15, 2014

week 8.

This week was busy for Emmett. It was also full of hard news for Matt and I to hear. I think we expected to receive some bad news, but we were pretty shocked from what we heard. 
On Monday, Emmett had his evaluation with the special education team. There was a speech therapist, occupational therapist, and a psychologist who took turns working with Emmett. Afterward, they met with me to discuss what he qualifies for. 
For language development, Emmett scored in the 5th percentile. For large and fine motor skills, he scored below the 1st percentile. Sigh. This was hard to listen to and a hard reality to face. Emmett definitely needs help and I want it to start now. So the team recommends he be in a co-taught preschool mainstream classroom, where there is a regular teacher and a special ed teacher in the room the entire time. We will start with this recommendation and see how Emmett responds. I think as long as he doesn't get too overwhelmed, he will excel quickly. The special ed team told me they feel Emmett has a lot of potential, which is comforting! Now, we wait for a call for more details. 
On Wednesday, we had speech therapy with Zena. It went well. Emmett seemed a bit more distracted or tired because he wasn't as focused as he has been in the past. He and Zena worked more on following directions. 
On Thursday, Emmett had his first occupational therapy appointment. This was more of an evaluation for the therapist to see exactly what Emmett needs help with. His therapist's name is Tianna and she seems really nice. Emmett was really confused because he expected to see Zena again and was a little upset when we went into a new room with a new person. Regardless, he enjoyed playing with the toys she had and was really cooperative. Now we need to wait for a call from Tianna to let us know when we can get on her schedule to start OT every week. It should only be a two-week wait. 
I am overloaded with information at this point. I am looking forward to the autism 5k on Saturday and spending time with family. 

Thursday, May 8, 2014

week 7.

Not much to report for this week. Speech therapy went really well again. Matt was able to come again and that was nice. Emmett is already expecting Zena to do the same games in the same order during his sessions, so she switched things up and introduced some new games. Emmett liked the new games, but was bothered by the change. Zena said it's great when kids have a routine, but with a child who has autism, their routines can become rigid and obsessive, which makes change hard for them. 
Emmett had a few meltdowns this week, which was hard. Things were smooth sailing for awhile, but this week was harder for him. When Emmett has a meltdown, if I can't get him to tell me what's wrong or what he needs, he shuts down and stops communicating. When this happens the only option I really have is to wait until he calms down or "snaps out of it" so I can help him. 
I just finished my second book on parenting a child with autism and it was very informative and relatable. I am learning a ton. The next book I'm starting is on a drug-free approach to autism, which should be interesting. Matt and I have agreed that we are going to try as many different methods as we can for Emmett to avoid putting him on any medication. We feel he is too young and can progress without it. His developmental pediatrician totally agrees, and wants medication to be a last resort. 
Best news for last: Emmett has been a rock star this week on the potty!! He's been peeing on the potty 2-3 times a day at home and I've been keeping him in underwear out in public. :) I make sure it's only a 1-2 hour trip away though because he is nowhere near ready to go into a public restroom. This makes things stressful and inconvenient, but he's progressing confidently at his own pace and it's working out just fine. I'll take what I can get at this point. 
The next two weeks are going to be busy with more big appts for Emmett, including psychology, special ed, and OT. 

Friday, May 2, 2014

week 6.

This week has been pretty successful! With prompting, Emmett has said "I want ________" multiple times! And therapy was a huge success this week. Emmett was very cooperative and was catching on to things Zena wanted him to say very quickly. I was so proud of him! Our job is to keep working with him exactly as we have been for the next week.
I was also able to make three appointments this week!! So grateful! May will be a busy month for us.
  • On May 12th, Emmett will have his evaluation with the St. Paul Special Education team. After this evaluation they will be able to tell us what he qualifies for as far as services with the school district.
  • On May 15th, Emmett will have his occupational therapy evaluation to see what he needs specifically in that area. He will then start OT regularly once a week.
  • On May 22nd, we head back to the specialty clinic at Children's in Minneapolis for the first (of 3) part of his Psychological assessment. In order for Emmett to be covered for most of the services he needs, most insurance companies need proof of a medical diagnosis on the behavioral end AND proof of a medical diagnosis on the psychological end. This makes things extremely inconvenient and annoying for anyone going through this. It also makes it a slow process, I've learned. Regardless of all the hoops we have to jump through, I am so grateful for the insurance we have. It is worth paying for each month! That "there-will-come-a-time-when-we-really-need-this" moment in our lives has officially arrived. It is a blessing.
The Autism 5K is coming up on May 17th and we are getting excited! We have 9 people on team Emmett so far and are so grateful to those who are able to make it. PRAY for nice weather that day!

Thursday, April 24, 2014

week 5.

Today marks one month since Emmett's diagnosis. I feel like within that month I have really tried to get as much done as I can to kick start the services and support Emmett needs. Although I feel like not much has "happened" yet, I am doing my part in taking all the necessary steps. Now I have to wait for phone calls and let things fall into place.
This past month has been intense and stressful, but has gone by quickly. Emmett has only had three sessions of speech therapy, so no progress to report on yet. His therapist is still working on getting him to specifically say, "I want ______.", instead of pointing or grabbing it out of her hand.
  • Matt was able to come to speech with me yesterday, which was great. He met Zena and got to see what a session is like. 
  • We got a call back from the feeding clinic and are scheduled for the first appointment on July 2nd. That was the earliest availability. I also checked our status for OT and we are 20-something on the waiting list. Hmmph. 

Thursday, April 17, 2014

week 4.

On Monday, Emmett had his screening with the school district at the SPPS placement center. He did very well with both the vision and hearing tests. The rest, however, was painful for me to watch and I started to cry. Emmett was not able to do most of the things the staff member asked him to do. For example, he did great with telling her colors and counting from 1-10. But when he was asked to copy a pattern, drawing, or structure with the blocks, he looked at her with a blank stare. He was also unable to answer many of her questions or finish a sentence such as, "A brother is a boy, a sister is a _____?" I know Emmett is smart and will learn at his own pace, but it was still really hard for me to witness him struggling with simple requests. Someone from special education is suppose to call us to have Emmett evaluated (again, sigh) to see what he qualifies for in school.
Speech therapy went well on Wednesday. Zena and Emmett mostly played again to get to know each other. She worked again with him on telling her what he wants, not just pointing and grabbing at toys. She wants him to say, "I want the ______." He still hasn't said it, but it will come with time.

  • Matt and I filled out the massive packet we had to send to the feeding clinic to get an appointment. We had to answer a ton of questions and write down everything Emmett ate and drank for 3 days. We had to write down what he ate, at what time, how long it took him to eat it, and how much (specifically) he ate. That's hard to do!
  • Someone from Ramsey County called me back! She was very helpful and answered most of my questions. It sounds like getting any kind of medical assistance is a long and tedious process. Yikes.

Wednesday, April 9, 2014

week 3.

I've made a LOT of phone calls this week. Too many. The frustrating thing is I feel like I haven't gotten very far from making those calls. There are a lot of things that move at a snail's pace with this process.
  • I called the county to try and get in touch with a case worker to find out what my options are for medical assistance. Everything is automated on the phone and it was almost impossible to talk to a live person. We have to get onto an intake list to be called back.
  • I got on the waiting list at Children's for Emmett to also have a psychological evaluation. I guess this evaluation is more "precise" in diagnosing autism and it could also find other brain disorders, if he has one. Plus, I'm pretty sure we need the behavioral and psychological evaluations to technically have a "medical" diagnosis in order for therapy to be covered by insurance. So confusing and frustrating.
  • I called the nurse line again at Blue Cross and waited and waited. Still haven't gotten a clear answer about insurance coverage. I really hope everything works out in that department.
  • Called another line to the county and left a voice mail for an intake interview. I think this is the right one.
  • Organized a binder with all of Emmett's documents we've gotten. It was piling up fast. I feel better just having that easily accessible.  
Emmett had his first speech therapy session Wednesday morning. It went really well and he was cooperative. He was scared walking into the clinic, but calmed down. His speech therapist's name is Zena and she is very nice and great with Emmett. I was observing the therapists at Children's and they all seem awesome. They all come out to get their patients and are so excited to see the kids. This session was about getting to know each other, so she and Emmett mostly played with toys and she tried talking to him as much as possible. He seems pretty comfortable with her. She also asked me many questions and got to know me.
After talking to me about Emmett's eating habits, Zena referred us to the feeding clinic at Children's, which strictly focuses on different foods and how to eat them and feed yourself. Feeding therapy is done with and OT so it's like getting two kinds of therapy in one shot. Zena thinks Emmett should go there because of his limited diet and his issues with gagging/vomiting on textures of food. This has been a huge problem and I am all for trying anything to help Emmett with his eating issues.  

Wednesday, April 2, 2014

week 2.

Today is National Autism Awareness Day. We all wore blue to represent the day. I was surprised at how many people we know also knew to wear blue today. April is also autism awareness month. It seems a little ironic how one week after Emmett's diagnosis is basically the autism "holiday", am I right?
We received a detailed write-up of Emmett's assessment in the mail. We also received a letter from Dr. Amy. She referred Emmett to Psychology Services at Children's and wants us to make an appointment. I need to call them tomorrow. I also need to find a support group for our family to attend.

Thursday, March 27, 2014

week 1.

Feeling really overwhelmed. I went to autismspeaks.org and printed off A Week By Week Plan for the Next 100 Days. I think using this tool will take the edge off because it will force me to focus on one week at a time. Hopefully, I can start thinking about one week at a time, versus thinking about Emmett's entire life ahead of him.
week one
  1. Complete Evaluations: medical evaluation is done, ECSE screening is on April 14th, may need a psychological evaluation as well to cover treatment (waiting to hear back).
  2. Getting Services: Speech therapy will start on April 9th, once a week. On waiting list for OT.
  3. Keep a Phone Log: made necessary calls for the week.

Wednesday, March 26, 2014

the diagnosis.

On March 24, 2014, Emmett went to Children's Hospital in Mpls for a 5-hour assessment. The assessment was recommended because he was showing signs of autistic behavior. It was broken into three parts.
The first was auditory and Emmett past perfectly. He had a standard hearing test and another test where he repeated words back to the doctor. I'll never forget how precious he looked and sounded while he was repeating the words back to the doctor. He did such a great job. :)
The second part was speech and he had difficulties in this area. He can comprehend more than he can say. He has troubles with following direction, describing what he sees, and proper use of pronouns. When he couldn't understand what he was suppose to do he either looked at the doctor blankly or started playing with toys.
The third part was behavioral. Dr. Amy asked us tons of questions and ran the CARS test (don't remember what it stands for), which consisted of 15 sections. On a scale from 1-100, 100 being severely autistic, Emmett scored 58. So according to that test he is moderately autistic. However, Dr. Amy believes he is more high functioning. The CARS test is not like a lab result, but more of a tool to use as a foundation for the diagnosis.
So Dr. Amy diagnosed Emmett with autism. Even though we were bracing ourselves for "bad news", at that moment it became real and was overwhelming. This is our new reality; our new journey.
Emmett is required to take speech therapy, occupational therapy, and possibly physical therapy down the road. He starts speech therapy April 9th once a week. There is a waiting list for OT so he can't start that yet. We need to see Dr. Amy again in 3 months.
*On the day of his diagnosis, these are the symptoms he has of autism (according to the American Academy of Pediatrics symptoms list):
social differences
  • doesn't bring objects of personal interest to show to a parent
  • 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 much concern (empathy) for others
  • unable to make friends or 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 (like a car horn or dog barking)
  • refers to self as "you" and others as "I", mixes up pronouns
  • doesn't start or can't continue a conversation
  • doesn't use toys or other objects to represent people or real life in pretend play
  • may have good rote memory, especially for numbers, letters, songs, or TV jingles
  • may regress in language or other social milestones
behavioral differences
  • rocks, spins, sways, twirls fingers, walks on toes for a long time, or flaps hands
  • likes routines, order, and rituals; has difficult 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
  • may be very sensitive or not sensitive at all to smells, sounds, lights, textures, and touch
  • unusual use of vision or gaze - looks at objects from unusual angles