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. 

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. 

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!

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. 

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.

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.  

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.