Erin Condren Planner

As a therapy mom, my life involves taking my daughter to therapy sessions, doctor appointments, filling out paperwork, conferences, and whatever she needs. I am also a Etsy shop owner. My job with that is to make orders, ship the orders, respond to e-mails, make new items to list in my shop. This is on top of getting laundry done, cooking, and taking care of my 3 year old son. So as you can see, my life does get pretty hectic. And I have to admit, my time management is not that great and I need to change that..

An Example of Erin
 Condren Planner

After much research and using other planners, I have opted to try the Erin Condren Planner. Her planners is customizable. You can choose your cover and add your name or monogram initials, the layout of the calendar (vertical or horizontal), and some of the planners you can choose the colors for the cover. She also has accessories you can buy: stickers, pens, notebooks, etc. It's expected to ship b/t Sept 17th-Sept. 21st.









While I'm waiting for it to arrive, I'm going to make my own stickers to go with my planner. It will include:

• Paperwork Due
• Doctor Appointments
• Music Therapy Session Days
• Shipping Days
• Conferences
• Must Dos That Day/Week
• Reminder to Order/Pick Up Medicaid Supplies
• Activities/appointments for my son

Anyway, I can't wait to get it in my hands. When I it arrives, I'll post a photo of it and write about it as well. I hope this will help me stay focused and have better time management..

If you would like to check out Erin Condren's website, go to this link https://www.erincondren.com

Also, if you want to place a order with her using this link as a referral, this also gives you $10 off your order with her products.
https://www.erincondren.com/referral/invite/terafendley0729

Organization

 Now that it's been almost a week since my daughter has been diagnosed with Autism, I am finding that time management, organization, and finding a balance is going to be very important. With the initial phase of getting my daughter additional help, taking her to her day treatment program, research/reading about Autism, sitting in couple of her therapy sessions a week, taking care of my almost 3 year old son, everyday things like laundry, and running a shop on Etsy.  It's going to take some organizing and scheduling.

One of the first things I did was go to Target and bought 2 2" binders, 2 notebooks, and a journal.

1.) The binder is for me to file my daughter's goals, progress notes/goals from her day treatment program, questions I may have for the doctor, and whatever else will be important to keep (research articles I may want to keep). It has dividers in the binder for those sections. 

2.) The journal is for me to take notes from research. Also to write down the things that my daughter is doing.

3.) The notebook is a communication tool for me and my daughter's school. I write in it what she is doing at home as far as how is she eating with or without iPad, new behaviors may need to be addressed.

I also keep a notepad in the binder with my to-do lists for her care and also questions to ask her doctors about. Another important tool for me is a planner.. Oh my gosh!! My planner is going to be my best friend to write down appointments, important things to remember as I run my business, and anything else that will be going on.

While my daughter is in her day treatment program, my son is home with me except one day a week when he's in preschool that day. When he's home, we're working on building his words, interactive activities that he would enjoy, and of course potty training. When he is in day care, that is my day to work on orders in my Etsy shop, sit in on one of my daughter's therapy sessions, and/or work on the house.

My son also has a binder where I will keep all his goals, progress notes/goals for when he gets evaluated for speech therapy. Each week, I write down the words I want to work with him on in his notebook.

In the next post, I will show how I organize my kids' binders :)

My Hope For Addison

There's a scene in Desperate Housewives I think about often. Lynette is pregnant with twins and finds out one of them will have special needs. As she is trying to cope with the news of her child's disability of being blind, will not be to walk, graduate college. Her husband tells her that with her being home and have intense therapy, their child could have a chance at life.

In one scene (I tried looking for the video) it is shows her son as a baby and her and the therapist are working together on leg strengthening and exercises in the home.

Later, you see her son walking with a cane and trying to get her to make a sandwich. At first, she said, "As soon as I'm done, I will make you one." There was a bit of an argument between them that he can do make a sandwich himself. As she ignores some of the argument, she watches her son making his own sandwich.

https://www.youtube.com/watch?v=LJis5bRAWAk

The last scene shows him graduating from law school and is valdictorian of his class. He mentions in his speech what the doctors told his mom of what he would not be able to do and basically he proved them wrong.

https://www.youtube.com/watch?v=YnojPDCmqsM

As I think about these scenes, it makes me teary eyed thinking about what the doctors has told us about Addison of what she will not be able to do in the future. Things that we take for granted and wish for our kids: going to college, driving a car, getting married, and maybe even have children of their own.

My hope is that we will prove the doctors wrong and she will do all the things we have dreamed for her to accomplish.

When my Daughter with Autism Gets Sick

When my son gets sick, he'll cry, sleep it off, wants to be held, and get right back to what he was doing within couple of days (which is rare that he does get sick).When my daughter gets sick, I worry about how much therapy time that could be lost due to "sick days." I worry about potential weight loss due to the fact she may not eat for days and can sometime lead to taking awhile to get her to eat normal again.

When I see my daughter develop symptoms of a simple cold, I worry it could lead to an ear infection. Because she is prone to ear infections. From the time she was 9 months old, she had a ear infection about every 3-4 weeks that lead to a PE Tube placement. During this time period, she would not eat well and lost some weight as well. Just when I thought it was over, she suddenly started to develop them again. Which at some point, we'll have to do something about.

The last two times she developed something "viral" that was going around, she ended up in the hospital because she got dehydrated. Since Addison is very oral sensory defensive and has her special needs, getting her to drink from the cup was nearly impossible. The first time she developed dehydration from the stomach virus, we literally camped out in the doctor's office, ER, and hospital for a week just to get her hydrated and drinking again. That round got so bad, that one of her labs came back critically low. That round was so bad that her veins could not hold the IV and had to stick her multiple times just to get the IV in. That round was so bad that when they had to get blood from her, it took even more attempts to stick her. We were finally able to go home a week later.

The last time she got sick was 3 weeks ago. We picked her up from therapy. Brought her home and she literally just sprawled out in the floor and would not move. I knew that was not normal for her. All I kept thinking was this is how she acted last year before she was hospitalized. We attempted to get her to drink something and could not get her to do so. This was alarming to us. We let her sleep it off and the next morning, she was very chipper. So, I gave her a cup a Boost. It came back up quicker than it went down. So, I called the doctor and got her in. They looked everywhere and saw she had puss in her left ear. I knew giving her antibiotics by mouth was going to be impossible since she was throwing up. So they gave her a shot in the office and prescribed us some more. Well, my job over that night was to make sure she drank something in hopes it would stay down. About 4 am the next morning, she dry heaved and vomited dark brown emesis. And off to the ER we went and got admitted again. This time we were only there for couple of days.

As you can see as a mom of a child with Autism gets sick, is very stressful. It's stressful because we know it leads to doctor visits or even a hospital visit. Just to give her medication is near impossible. It takes two of us to get it down and we hope it won't come back up. And this makes her oral sensory defensiveness even worse. It makes her fear the spoon and the toothbrush as well and takes awhile to get her to tolerate it again. If she had lost weight, we would be working very hard to get her to gain it back whether it's giving her Boost and foods we know she will eat.

This is just one of my challenges as a therapy mom to a child with Autism.

My Role as a Therapy Mom

You've heard the phrases: stay at home mom, work at home mom, soccer mom, and maybe dance mom. Well, I'm a therapy mom and proud of it. My day consists of taking my daughter to therapy 5 days a week, filling out paperwork to get additional therapy at home, and possibly have speech therapy come to my house to give my daughter help with any issues at the home. My son who is mimicking some of my daughter's speech delay is also getting evaluated to get him speech therapy. So, yes, I am a therapy mom.

At the end of the day or on the weekends, when she is home from her day treatment school, we are continuing her therapy as parents. Whether it's doing the sensory brushing, joint compressions, or researching on the next communication sign or word, this is my role. I also spend my time researching appropriate toys that could help both my children to develop properly.

Because my daughter is currently at a 15 month development age in a 4 year old body, I have to think of additional safety measures. I also have to think about how am I going to get her potty trained when she is not aware of her body. I have to think about when she is sick to put the puzzle together of what could be wrong when she cannot tell me what is wrong.

On top of these tasks, I also have to make sure my almost 3 year old son is not affected in personality and his development as he gets older. Making sure he does not feel left out when our attention is on our daughter. And making sure that the every day normal stuff gets done: laundry, meal planning, keeping up with the house.

My role as a mom has taken on a bigger role since we received my daughter's diagnosis. Something as a mom, I don't take lightly.

Getting the News

As parents we knew something was "not right" with Addison. In the last 4 years, she has seen doctors and been tested via ultrasounds, MRIs, and blood tests. But nothing in this world could have prepared us for what we heard yesterday during her evaluation for Autism. We (or I ) did expect for Addison to have autism. But to learn that she is developmentally delayed of 75% of her age with intellectual disorder and severe speech delay disorder was very hard to swallow.

The evaluation was from 9 am until 4 pm. The doctor conducted a variety of tests. She first had Addison to put cubes in a cup. There were 9 red cubes in front of her. She mostly picked two up and banged them together. Then the doctor moved along with other toys such as wood puzzles with shapes to have Addison to put them in the correct place, hide a bracelet under two washcloths and she had look for it, put a bell in a clear box and she would have to retrieve it. Unfortunately, Addison had to be prompted a lot to get her to complete the task or she would not complete it at all. Then she moved to toys we all knew Addison would like, a jack in the box, a mechanical rabbit that had a foot pedal, a rubber duck that spit out bubbles. Once she figured out how to work it, she was on it. But took a lot of time for her to figure it out. They also did a pretend birthday party for a baby doll. The doctor pulled out Playdough, smushed it into a cake, put sticks in the cake for candles, and sang the Birthday song. I tired to get her to "pretend" blow out the candles. But she didn't get it. And she was more interested in playing with the dolls eyes since they moved.

Once that was over, we got a one hour lunch break and came back around 1. The last part of the evaluation was mainly questionnaire of what Addison does at home. Sleep pattern, eating, social interaction, how she got a long with Hunter. When that was over, they tallied up the scores and came back and went over her strengths to help her in therapy. She is very eager to learn and loves to have the physical play. Then came down to the diagnosis.

The analogy they used was if a car is going 100 miles and you are going 32 miles, do you think you're going to catch up. Well with Addison's development delay, there is a significant gap with her delay. We were told it's all genetic and that the doctor wants to do a Genome test. The state of Arkansas is trying to adopt this test, however; it is too expensive. When the state can get it cheap enough for Medicaid to cover it, then we can have this test done. Basically, this test will find chromosomes known to be issues that are not trained the eye. They think this is a rare syndrome with no name to it.

Where do we go from here??
1.) We are applying for Autism waiver. If we are accepted into this program, Addison will get an additional 20 hours a week of therapy time and will be done at home on top of what she's getting at her school. The problem is that it's so new to the state, has a waiting list, and just opened 50 slots. We are currently waiting for Addison's pediatrician to sign in agreement with her diagnosis and the actual report from the evaluation. This part could take up to 3 weeks to get this report.
2.) Addison will continue where she is at receiving her physical therapy, occupational therapy, feeding/speech therapy, and her classroom therapy. We have decided with Addison approaching 5 in 8 months, we will let Addison continue with her current school for another year to get more therapy.
3.) Because our almost 3 year old son is mimicking our daughter's speech delay, we are getting him evaluated and set up at a different speech program. But he can't get evaluated until he is 3. Which this is only a month a way. If they accept him, I will have more free time to sit in on Addison's therapy sessions as well.
4.) We are going to start a communication notebook for Addison's school so her dad and I will know what goals they are doing with her on. And I will write in it saying what she is doing at home as well.

All in all. We have a very long road ahead. Not going to be an easy one. It's going to take lots of therapy, love, changes, and support to hopefully get her independent.