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



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

Tuesday, December 27, 2016

Chocolate Covered Memories

This story comes to you today from a little piece of sunshine that is a sweet memory of my childhood. My grandma Johnson is a woman among women. I adore her. She is a masterful cook. She can whip anything up in a moments notice, from scratch. It's been the last couple of years that her health has been failing her. On Christmas day she was released from the hospital where she was admitted  for pain in her right arm. She was released just in time to make it home to welcome all the family into her home to celebrate. Christmas has always been an amazing family gathering at my grandparents home.

This particular story didn't happen at Christmas time, but it was during the deer hunting season. My dad and grandpa had went into the woods to do some deer hunting and grandma was in her kitchen melting the chocolate bark on the stove. My dad had bought chocolate bark before to put on top of our ice cream. I remember being amazed by how the chocolate hardened on the ice cream. Grandma was taking two Ritz crackers and putting peanut butter in between the two crackers and covering them with chocolate. My brother and I were responsible for putting the peanut butter on the crackers. I can hear Grandma now, "Don't put too much peanut butter on the crackers." She finished up the last of the chocolate and put the crackers in zip lock baggies. My brother got his own and I got one of my own. Then she filled a larger bag up for the guys out in the 'deer woods', as she called it. She put us in over sized orange vest and sent my brother and I out to take the guys hunting some of our goodies. She said, "This will help hold the guys over until dinner time. The peanut butter will give them energy." Off my brother and I went to find where the other guys were. It was a bit of an adventure. Grandma and Grandpa lived on quite a bit of land.

Today I pulled out the chocolate bark and just the sign of chocolate brought the kids to the kitchen, eager to see what I was going to make. We started putting peanut butter on the crackers and dipping them in the chocolate. It reminded me of the amazing time I had with my Grandma the first time I had this little treat and the adventure that she sent my brother and I on when we were kids. It really is the little things that we do with our kids that makes the difference. It's the time we spend talking with them and including them in our grown up worlds that they will recall with their own kids someday. All the grandmas out there that make yourselves available to your grandkids, teaching them the little things that their parents haven't got to just yet. You are valued and loved and you matter in the equation of growing happy healthy families.

That's all I have for today. I hope you all had a very Merry Christmas. From my home to your home have an amazing New Years!!

That Autism MOM

Wednesday, November 30, 2016

Love getting Headstarts

About a month ago we moved to NWA (NorthwestArkansas). Autism parents can really grasp the intensity that a move can have on our children with autism. Then the time change came and autism parents know how the time change effects our children. Then there was Thanksgiving. I'm sure you know how well we all handle the holidays. While our children enjoyed seeing family it's hard on their sensitive little bodies. I'm just thinking with all this change I'll probably not sleep for an entire year. 😳

Well today was such a gift. I'm up before both of my kids. I feel like I even got to sleep in. I was woke up t 4am by Miss Izzy wanting her iPad, but she drifted right back to sleep. 8:00am came and they are still asleep. This is HUGE! They needed this and I needed this. Getting a head start on my day makes things flow so much better. This is going to be a good day.

I'm going to go enjoy my cup of coffee in silence now. I hope and pray you enjoy your day to. Find your blessings no matter how small or insignificant it may seem. One thing that autism has taught me is to appreciate the small victories, for me today is a HUGE victory!

Shelli, My Kids Mom

Tuesday, November 22, 2016

Gearing up for Thanksgiving

Good morning I realize that I have had very little time to set down and catch up on my blogging. We have relocated to the Northwest Arkansas area. This will be our first Thanksgiving in the new home. The transition was a little rough, but things are settling down in time for Thanksgiving.

There is a tradition on social media that is a beautiful display of thanks. Individuals daily will post what they are most Thankful for throughout the month of November. I did not participate, but I would like to take a brief moment to share what I am most Thankful for.

1. I am most Thankful for My family. Patrick is great dad, great provider for our home, and really a great husband to me. I am so thankful for Josh and Izzy. I enjoy so much of our time together. It's not all easy, but we try to have fun.

2. I am thankful to know the Lord. The strength and peace that he brings to my life on a daily basis is my saving grace. I know that I would not be able to do what I do, day in and day out, without him. I am thankful that he is just one breath away when I need Him.

3. I am thankful to live in America. Even in the craziness that is being played out in the news and other outlets of media, I am thankful for America. It is because of our freedom that people are so free to share their grievances. If we were an oppressed nation there would much less being voiced, I'm sure. I am thankful for the freedoms that I have and those that fought for those freedoms. It is easy to marginalize those freedoms when we did not pay a price for freedom. The bible instructs us to not forget the ancient landmarks. I don't want to forget the price that was paid today.

4. I am thankful that I was given the opportunity to become a mother. I smile as I write this out because it truly brings me so much joy. I love being a mother and being here with my kids. I was chasing Josh around the house yesterday. He was so clear and so much fun to be around. He has had a rough couple of months with all the transitions, its been rough on him. Yesterday was a reminder of who my son really is and what his baseline. Izzy was helping me in the kitchen. She loves to help out in the kitchen. I spend a lot of my time in the kitchen most days. It takes a lot to keep up with the meal schedules in our home so most of our days are hanging out in the kitchen. Both of my kids have above average skills in the kitchen and I am confident it is from our daily investments together in the kitchen that has made all the difference.

While I could go on and on, probably for the end of the entire month, but these are my top things I am thankful for.

If you are an autism family I will praying for you throughout the holiday season. I know how difficult it can be to change up the daily routines and adding people into your life that you only see this time of year. I get it. I know it is hard. It is for us. But challenge yourself, challenge your family to get out and see your extended family. You know just how much your family can handle, so even if it is just for a small moment of time, show up say hi and if you have to leave right after, so be it. Make an effort this season to connect. It is important, but I also want to encourage you to create a meaningful experience for your kids too. If that means fixing only the foods your kids will eat and calling that Thanksgiving, go for it.

Dad's pull away from the game and find your kids and make an effort to connect with them doing what they enjoy. Take them to the park to swing or purchasing an extra can of shaving cream and spreading it out on the craft table and play in it with your kids. If this is what is meaningful to them, then do it. Enter their world as much as possible and strive to engage with your family. Your days are numbered make the moments count.

Mom's try to relax and enjoy your day. I will you often prepare beyond just the cooking. Social Stories you prepared to make the day a success for your kids. You may have really worked hard to make sure that your kids had like foods that were within their diet restrictions. No one even notices your hours of prep time you put in for a successful day. I want to say thank you to you. I know that you work so hard being "that autism Mom" for your family. Happy Thanksgiving to you and I give you permission to relax and enjoy this day too. :)

I'd love to hear about how you celebrate Thanksgiving? Do you have special traditions? How do you survive the challenging obstacles? I would love to hear about it.

Thanksgiving is a time for family. Enjoy your families despite all the differences and quarks. Love one another and bless one another.

Shelli Allen, My Kids MOM