Pages

Monday, October 30, 2017

We are fading out old medicine and I'm Making Art ;)

We are in a transitional stage in our home. We have been trying new medicine. Every time we start a new one, I have a renewed sense of hope. Introducing medicine was not what I wanted, but we needed help. Nothing was working. Medicine was a last resort and here we are; one medicine after another shows us a new side to autism that isn't always nice and tidy.

I worked in the medical field prior to becoming a stay at home mom and caregiver. I know how medicine works. I just hate waiting. I hate seeing my kid struggle during each transition. I mostly don't like to see the aggression. It's rough on all of us.

I don't know about you, but I put on my nurses hat and I go to this place in my head that allows me to just be numb to the fact that this is my flesh and blood. I watch as he seems to completely fall to pieces. It reminds me of a seizure, but its a full blown melt down that he can't control. I see him try to calm himself, but he can't. We hang on and wait for the calm to come and try to not get injured in the storm.

It so surprising how quickly this comes on and goes. It's like a tornado in this way. He calms down and then he smiles and even sometimes laughs. I am free to come back to my reality and take off the "nurses hat" and hug my boy. I tell him I love him and that I hate to see him struggle so much.

We are hoping to find the right combination of meds sooner than later. I remember how much of an answer to prayer Clonidine was for our sleep challenges. I still will not let our Doctors mess with it. They sometimes will say, "We use Clonidine sometimes to control behavior for autism" and I kindly say, "We can't touch the clonidine, that's what we use for sleep." I think I probably do the crazy eyed smile that sends the doctor on to his next idea. They never push it. I know they just have to ask.

Do you hate calling the doctor about med changes? I do. If the medicine is not working and you ask for an increase in dose or to try something different. I think I hear a hint of discouragement in the doctors voices. Maybe its just my own discouraged soul that I hear?

So here we go, pulling out of the pharmacy parking lot and I look at my husband. I told him about my hopefulness that this was the last med we would have to try. That maybe we could leave the house again and it not be so hard for our son. "Maybe this is it," I said. The thing is, I never dreamed that this would be my experience with being a mom. This is all new for me. Everyday is its own mountain of guess work and maybe's . I want to make the best of this. I'm not here to merely survive, I want to live. I want us to thrive. I'm confident that this is what we all want for our lives. I don't want this just for me, but for my kids who struggle too.

The struggle in the midst of the suffering reminds me of our mortality and how life is only what you make it. Artist do this all the time. Some of the best art work is made out of the most unlikely materials. Who would have thought that a struggle like autism could be viewed as a work of art? I believe it was Franklin Covey who once said, life is like a canvas; its up to you what colors will be used to paint it. Sometimes I just need a little reminder, that in order to make something of the canvas, I have to pick up the paint brush and start painting. I have to remember to live every moment with hope and use all the colors.


Friday, August 4, 2017

Things I Do When I Haven't Been Able to Sleep


Things I DO When I Haven't Been Able to Sleep

This blog post is really a spot light shinning on the faithful autism parents who have the craziest sleep schedules because their children DON'T SLEEP!!!

Back story: 
 Josh is my oldest and was the one who conditioned me to the ongoing sleepless nights. I remember putting him into the car seat and driving him around for hours and hours, hoping he would fall asleep. And he would, as long as I was driving, but as soon as I would stop he was wide awake. Over the years Josh has mastered THREE consecutive days with zero amount of sleep. It was sad to watch his little body fall apart like that. He would run from one end of the room to the other at full speed and crash as hard as he could into the walls for input. By day three his body was so overloaded from not shutting down that he pulled an entire bookshelf over on top of him. The adrenaline  was so intense for him he finally went to sleep, except this time I couldn't let him sleep because we were so worried about a concussion. He was only three years old. 

See I tell this story and for anyone who has not been in this situation it seems too unreal to be true. But for those of us that lived in this reality we have a perspective on what I call an "autism family lifestyle," only those who have been there will "get it". 

My heart truly goes out to the families who are still looking for solutions to their child (ren)'s sleep challenges. We are thankful for melatonin and Clonidine for Josh and Hydroxyzine for Izzy. Without these medicines my children will not fall asleep. (Period)

Today's Sleep deprived story:

So even though my kid's medicine works at getting them to sleep it doesn't always keep them asleep. If they hear unfamiliar noises or something just happens to wake them up, they are up till the next night when they get their medicine again. :O)

Izzy has been regularly getting up at somewhere between 1:30AM and 2:00AM this past week. When she gets up I try to get her back to sleep if I can or give her something to occupy her busy little brain so I can get any additional sleep if possible. I hand her a tablet and let her watch Netflix, take a warm shower, get her a snack literally ANYTHING to get even an hour or more of sleep. Sometimes after about 3 showers and endless supply of the Spanish version of Bob Zoom on Netflix she might fall back asleep. If I'm lucky. The trick is getting her to sleep and keeping her quiet so she doesn't wake up Josh. Josh is a little harder to get back in bed. If he wakes up the whole house better be ready because Josh wakes up and his daily routine start right then. Then he is 'off' the entire day. Its a juggling act having two on the spectrum, which I think it has its perks as far as parenting strategies go.

SO this morning, after keeping this kind of schedule all week, Izzy woke me up and wanted Romine noodles. I would have said no to this request had I even been coherent, which I wasn't. I then managed to put the dry noodles in the microwave without any water in the bowl. I set the bowl in the microwave for 3 minutes and went back to bed. I then woke up to the awful burning smell of romaine noodles and ran to the kitchen to assess the problem. I thought I was burning pop corn which I would have been more okay with than Romine. I wrapped up the situation and headed back to bed. After falling back to sleep, I'm again woke by the adorable blondie next to me asking with "her words" (her language skills are limited, but growing everyday) for my cell phone. Which without a thought I handed the phone over like a little zombie puppet. By the time I had realized what I had done I snatch the phone from her hands as she was putting angry faces on people Facebook comments. Which I very rarely use that button, so if you happen to see that I gave you an angry face on a comment that you posted on Facebook please just know that I did not put that there. My daughter thinks it looks funny. It wasn't me. So I set my phone up with Netflix and turn on guided access and return it back to her so I could go back to sleep. As  she starts to fall back asleep and I began to join her in sleepy land, and in walks my handsome son, making his good morning noises and ripping the cover off our bed. Izzy sets up out of her sleep and gladly announces, "IT's MORNING TIME!!"
 and its only 4:30AM.

It's insane I know. If you're a mom of a kid or kids who don't sleep I fully believe we are going to get the best of beds in heaven where we are allowed to sleep until we can't physically sleep anymore. :) This was a day that coffee couldn't even cure.

On that note what am I still doing up. I should be sleeping while the kids are sleeping.

Good night you all and best of luck and try to get as much sleep as possible. You'll need it. :)

That Autism MOM



Thursday, April 6, 2017

How We Survived Teach Them Diligently Homeschool Conference

A 



TTD HOMESCHOOL CONFERENCE

I was so impressed with Teach Them Diligently Homeschool Conference. I had an opportunity to hear Ken Ham speak. I went to almost all of his sessions and loved the information he shared. He had some really on target points to make about today's culture and the Christian Church. I took home some amazing resources from HSLDA'S. Educational plans for special needs homeschoolers and one other form that I can edit to help me tract goals and such for the kids. All of that was very helpful. If you are not a member of HSLDA I would highly recommend it. For $1,000.00 you can become a lifetime member, which is a huge saving and you have complete access to all their resources. They had yearly memberships as well, I believe it was $120.00 for the conference price. Not bad. 

I was extremely excited to have a handful of classes that were just for homeschooling with special needs. I walked into the first class with other mom's homeschooling kids with special needs and I felt such an instant bond I didn't want to leave. It was like a sweet bear hug and a great pep talk of you CAN do this. I totally needed to hear that. Having kids with severe autism, I know our Homeschool days don't look like most. I'm okay with with not being typical in this way, but it is supper encouraging knowing that I'm not the only one out there braving this journey. 

 
 
So my kids don't do well in these types of events. 
 

And they don't like the change in the routine. But my heart always wants our family to experience this together. I enjoy seeing all the families at Homeschool conference and I want that desperately for me. However, I will not push my kids when it's just not necessary. I do have an amazing husband who really knows my heart and he understands our limitations well. So we compromised; he brought the kids during one of the breaks and I took my kids through the exhibit hall and sat down with my husband and told him a bit about what I was getting out of the days conference. After about 20 minutes the kids where maxed out and I walked with my family to the exit door to say good bye. I finished out the conference with my kids safely at home where they were much happier without out the craziness of the conference environment. 

In one of our sessions, they talked about the difference in modifications and adaptations. I do both in our homeschool day. A modification is to simplify the lesson and adaptation is providing the tools necessary to do the work without altering the lesson. In our world I make a lot of modifications; more than I want. This is a clear indication of the severity of how much autism affectes my children's life. The truth is they wouldn't know the difference. They are loved and well cared for. I have learned that I can't change everything, I do what I can and give the rest to God. I have found this is the best way to live and deal with the difficult stuff in our life. I pray often for wisdom and seek for God's direction. 

I am daily grateful to the love and support of my husband. He is my anchor, protector, and provider. I'm glad we get to walk this journey side by side. 

Thursday, March 23, 2017

Teach Them Diligently Homeschool Conference







Today we are getting ready to head to Rogers, Arkansas for the Teach Them Diligently Homeschool Conference. This will be our first time going to this conference. This will also be the first time taking our kids to a conference like this. It's a big deal for them. YIKES! My husband usually stays with the kids while I go. He is such a trooper.

I know that anything like this is really intense for my two kids. We don't leave our children with many people. We are very, very choosey who we let into their little world. So we have put some contingencies into our game plan for the next few days. My husband is a big part of that game plan and I am so blessed to have his support. We are going today for registration and the whole family is going. YAY! We will stay as long as the kids can tolerate. There may be a lot of walking around and getting familiar to the building this evening. There are classes that Patrick will go to and I'll take the kids and classes that I'll go to and Patrick will  take the kids. We will make the best of what we have. We are a team.

I am excited to sit in on the sessions and meet other families on this journey. I wish there was more support available for families like ours to attend and spend time getting refreshed. Our homeschools are a bit different, I assume than a typical homeschool family. However, anything that I can include my kids in, even if it is just for a few minutes, is a special moment for me. This conference has a few more sessions geared specifically for homeschooling with special needs and for that I am thankful. I need a time to get new ideas and refresh from the day to day work that I do with my kids. I love hearing about new ideas and trying out new curriculum. This is really a treat for me. I'm so appreciative of my husband for helping make this a priority. ;)

Let me know if you are planning on being at the conference. I'd love to see you there.

I'll try to post pictures if I get a chance. I may have to clear up some storage space on my phone so I can. :) This is a never ending story for me. LOL

Hoping that everyone has a great day.

Shelli Allen,
That Autism MoM
www.thatautismmom.com