A young boy with both a rare brittle-bone disease and autism. He is a happy kid who loves everyone. Every day is a great day for him. He is always happy and wants to make everyone around him happy.  He is joyous, funny, life-affirming world view that transforms and unites everyone around him. Just about all his classmates love him at school and Austin sees everyone at school as his friend. The class bully he considers his best friend. Logan his brother dislikes how he belittles his brother. Austin sees his bully as a sad person and wants to make him happy.

Austin was also born with osteogenesis imperfecta, or known as brittle-bone disease. He is no stranger to broken bones and has had a lot of broken bones.  

Scott the father has his own way of handling his son. Alcohol is a close friend and an imaginary friend that he talks to. It seems that every time Scott is in charge of watching Austin, he ends up in an emergency room with another broken bone. Scott loses his job. Everything spirals out of control like the mounting medical bills and Austins huge meltdown. The mom Theresa, is the family glue with her love for her family and faith.

Having a daughter with Autism and other medical issues this movie spoke loudly to me. I looked over other reviews and seen some critical ones but if you haven’t been in the shoes of a parent or a family with a child with autism it’s hard to relate. I feel that those reviews looked at the movie from the outside looking in. The movie is heartfelt and honest with all the joys, frustrations, and day to day life of a parent and family with a challenging child. I chuckled and teared up many times because I could relate to the many different aspects of the movies.  

Buy tickets today to see The Unbreakable Boy in theaters starting February 21!

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 Disclosure: I received this complimentary product in exchange for my honest thoughts. 

 

July Is National Juvenile Arthritis Awareness Month. There is  estimated 300,000 children in the US who have everyday challenges living with juvenile arthritis (JA) and related diseases. Arthiritis just doesn’t effect adults. Juvenile arthritis is an umbrella term used to describe the many autoimmune and inflammatory conditions or pediatric rheumatic diseases that can develop in children and teens.

The various types of juvenile arthritis have many common symptoms, like pain, joint swelling, redness and warmth, but each type of JA is distinct and has its own unique characteristics and how it affects the body.

Watching your child struggle everyday is hard with the little things we take for granted. Exercise and movement is important. When you have other issues on top of JA it can be even more challenging.

My hero, my daughter is one of the 300,000.

I found this a very powerful message. Are actions speak louder than our words.

Last month I got to go home and it was a much anticipated trip home as I haven't been home since 2001. It was great to see my sister and my aunts, uncles, and cousins.

My daughter went with me and the guys went and did some extreme camping in Colorado.

Bug was extremely excited about flying on an airplane and being in the clouds. She filled up my phone and her tablet with photos.

Our plane arrived and is getting ready to get loaded.

Bug wanted to see if she could find our luggage get loaded in the plane. Guess what she did see it get loaded thanks to my brightly colored fluff ball that is attached to it. 

Having a child with Autism and other disabilities I was a bit nervous with how she would react on the plane. Luckily she did amazing on the flight! I have to admit my brain hurt after awhile after the details from the clouds in the sky and the landscape below. She couldn't understand that from where I was sitting I couldn't see what she seen or couldn't just unbuckle to look out the window. I had to pretend I seen some things. 

Our view of leaving Wichita.

She was amazed at the landscape outside of the city and how it looked so barren. Welcome to Kansas. 

Below are just a few more photos from above.

I loved how my daughter purposely captured a photo of the wing again but in the clouds.

 

 

She was amazed by all the woods. She couldn't believe how many trees she could see everywhere. I have to admit it made me miss the scenery.

On our last leg of our trip leaving Atlantic Airport.  

It was a wonderful trip seeing my family and going to the beach. 

Letter I is for- Idiopathic Arthritis 
 
Idiopathic means of an unknown origin.

My daughter suffers from arthritis. It breaks my heart when she is suffering. She doesn’t express her pain often due to her cognitive ability but, I’ve learned to see her pain in her actions and how she does daily activities.

Idiopathic Arthritis is better known as Juvenile Idiopathic Arthritis or JIA. This is the most common type of arthritis that affects kids. It was known as Rheumatoid Arthritis but, the name was changed recently to reflect between childhood and adult arthritis. JIA affects 1 in 1,000 kids. Its onset is usually before a child is 16. The cause of JIA is unknown.

JIA is a chronic disease that affects any joint throughout the body. The immune system mistakenly targets the synovium, (the tissue that lines the inside of our joints). This synovium will respond by making excess fluid which leads to swelling, pain, and stiffness. The synovium and inflammation spreads to the surrounding tissue, which eventually damages the cartilage and bone. Other areas like the eyes can be affected.

There are 6 subtypes of JIA, which is based on how many joints are involved and symptoms.

Systemic Arthritis, Oligoarthritis, Polyarthritis, Posoriatic, Undifferentiated, and Enthesitis-related arthritis.

My daughter falls under the subtype Oligoarthritis now. Which subtypes can change with time with some kids. Oligoarthritis is more common in girls than boys. It affects fewer than 5 joints the first 6 months of the disease. Usually, the common areas affected are the knees, ankles, wrist joints, elbows, and not limited to those areas. It can also cause inflammation to the eyes. The good news is that half the children will outgrow this arthritis by adulthood. Usually, it’s the children who are diagnosed before they are 7 may outgrow it. Older children they have found usually go into adulthood. My daughter falls into the later category. For my daughter it effects her knees, ankles, wrist,elbows, fingers, and sometimes her shoulders and neck.

Symptoms of JIA may include:

Morning stiffness
Pain and swelling along with tenderness in the joints
Joints feel warm
Limping
Fever
Rash
Weight loss
Irritability
Fatigue
Eye pain, eye redness, and blurred vision

JIA  it is treated with exercise through physical and occupational therpy. Also it is treated with medication to help relieve the pain and reduce swelling.

JIA looks different for everyone. Some have long term complications with vision, permanent damage to the joints, loss of function to several areas, and damage to the heart and lungs due to inflammation. 

Arthritis is not fun whether a child or an adult. There is still much research to learn about this ugly disease.

 Other bloggers have joined in Blogging through the Alphabet.  Annette and Amanda are hosting this on their blogs. Stop by and see what they are blogging about with the letter I. 

#abcblogging

A is for Aleph

B is for Bee

C is for Crash

D is for Dragonfly

E is for Enter

F is for Friend

G is for Gadol

H is for Horse Therapy

Update in the last few weeks I was contacted by a mom in Germany who came across my blog who has a son with this deletion. It was a surprise for me.

I have my Bug listed on a network called Chromosome Disorder Outreach and Unique. When I renewed my yearly information with Chromosome Disorder Outreach in January I get an update of any new cases with this deletion. Let’s just say that my Bug has been lonely on the list for many years.

When I received the yearly information I saw that the mom from Germany and one other person was listed. I was already in contact with the mom from Germany and she knew of another child who had this deletion in Germany. We reached out to the other mom who was in the United States. This mom knew of another individual with the deletion. I was excited after so many years of thinking my Bug was the only known case of this deletion.

As of now we are 5 kids in all that have 20p12.1 deletion. All of the kids have some of the same issues and some of them have other issues that are unique to them. My Bug is the oldest and its interesting seeing the same unknown issues that my Bug has already went through. 

It’s excited to me as I know that I am not alone on this journey. I don't know how this will help us. We will all talk to our geneticist about this. Bug goes in 2 months for her 2 year follow up.

This is from my page that I have had out there since 2010 and I have kept updated over the years. 

This is what I wrote:

What is 20p12.1? Good question as we don't know either. They are not even sure if this is the reason for her physical challenges and her characteristics. My daughter is one of the many children who are pretty much un-diagnosed. I am not alone as there are many other families in the same boats, all searching for information that will help them understand their child's symptoms and special needs.

What is my hope of this small page? Maybe someone out there has the same genetic deletion as my daughter and will find my blog. Maybe we can help each other in our search.

What symptoms do we have?

*Stroke at 10 1/2 weeks old
*Seizures
*Global Developmental Disorder
*Lots of eye issues - 5 names I still can't pronounce
*Intellectually challenged
* Rheumatoid Arthritis -Juvenile Idiopathic arthritis, Persistent Oligoarthritis

*Sensory Processing Disorder
*ADD

*Hypotonia (Low Muscle Tone)- significant

*Autism
*Blood clotting disorder G20210A Prothrombin Gene Mutated Factor II
*Raynaud's Syndrome
*Doctor's wonder if she could be a precursor to Lupus.
*Failure to thrive with weight-we are looking at a possible feeding tube.(Not an issue anymore).
*GI issues with unknown blood issues. 

*Reflux for several years when younger. 

*This is just the short list as that is all I can think of at the moment. :-)

My child looks just like your child except that she is unique is so many ways. On first glance if you don't have a trained eye like the geneticist does you would probably not even notice her dysmorphic features. They are there if you know what to look for.

This is my daughter's life in a nut shell. Blessings and thanks for stopping by my little page. I will update when I can. 

Bug has been doing horse therapy for several years now. One of the horses that she did therapy with for a long time is going to be put down at the beginning of the year due to a medical condition.

 This is sweet Ellie.

 The riding center is going to have a goodbye party for her with all the kids. We couldn't make it on the date for the party. 

They were gracious to let us come in the evening after classes.

 I have never seen Bug cry and show so much emotions before. She didn't even want to go and say goodbye to Ellie. I kinda surprised her and took her over before she had her 4-H Entomology class. 

I felt strongly that she needed to see her due to the extreme emotions she had. She was upset with me and didn't want to get out of the van. It was a full blown meltdown.

Grief is hard for any child. For a child with Autism and other special needs it's a harder concept. My child doesn't express her emotions very well.

 I wanted Bug to deal with it and not have regret later on about not seeing her one last time. She needs to understand that people and animals die it's just part of life. It's okay to be sad and cry. I wanted her to deal with her emotions. We've had pets that we have put down and she cried for a few minutes and then moved on quickly. This was so different and effected her for days!

Ellie was very playful with Bug and she was able to hand feed her an apple and hug on her. She even got a few horse kisses.

Bug was happy afterwards that she got to say goodbye to Ellie. She still cries over it but, she remembers how happy Ellie was being with her. It will be interesting to see how Bug reacts when we start back in horse therapy next year.

 Bug was able to take her out to the pasture. To me this was a fitting end to Bug saying goodbye. 

What a blessing Ellie has been to our family. Ellie has helped my daughter in more ways than I can express.

Goodbye Ellie and thank you for all the children you have touched and helped. You are treasured and you will be remembered in many hearts.

I am really excited about an upcoming review. Bug's therapist from Heartspring is requesting that we bring it every week to therapy so she can work with her with it. Her therapist is intrigued with Forbrain.

I'm just as excited to work with Bug with Forbrain. Forbrain has been extremely generous with The Old School House Crew team. A lot of excitement with this unique review. 

I want to shout out how grateful I am for this opportunity to review Forbrain.

Today April 24th is Undiagnosed Awareness Day. Do you know someone who has an unknown medical condition? Or do you have a child who is undiagnosed? If so you are not alone.
 
My daughter is just one of millions who is undiagnosed. It's real the pain she suffers and the many symptoms that have many specialist stumped. 

Bug is my hero. She deifies all the odds and can do many amazing things. 

Could I endure the pain and procedures and all the things she has to endure?

She defines the word courage. 

Her faith in God is inspiring to those who know her. I am a better person because of my daughter.

She brings joy to everyone who knows her.

This is a re-post on someone emailing me and asking me, "how do I eliminate distractions in the classroom" and "everyone needs me at the same time".  This is a fun and simple way I have did it in the past. It has worked and saved my sanity.

My kids love these wooden kids craft sticks. We had a lot of fun decorating them. Are you wondering how these cute wooden kiddos can help limit distractions in your homeschool?

That is where the cups come in. When I am working with one of the kids and the other one has a question, they take one of the sticks and puts it into the empty cup. They don't interrupt me and will wait patiently by the table until I am finished with the other child. Sometimes, they will go in the play area until I am done. This way they know that I noticed they need me, and also that I won't forget that they need help. ( I need lots of help remembering what I need to do next).

I had to do something with Bug. She didn't understand that mom is explaining something to the other kids and would just interrupt when I was teaching. It would make the others lose their attention and I would forget my train of thought. Usually it was stuff, like her wanting to tell me about something that happened a week ago or something that was not an immediate concern.

Now, all the kids are more conscious of what they need. They know if it is something that can wait until after school not to put the stick in the jar. At first it started out like that and I would politely tell them, "these cups are for things that can't wait until after we are done with school." It took them a few weeks to get it. Now, it has been such a big help. 

I started using these several months ago. I love it when something so simple can be such a blessing. I hope this can help you in someway or give you some kind of idea how it can help your family with distractions during school. I know someone is going to ask, "where I got the craft sticks?" I picked them up at Hobby Lobby for a few dollars. The cups I picked them up at Target on clearance. As soon as I seen the bugs on the cup I knew that it was perfect for what I needed. Better yet, my Bug is crazy for bugs. May the Lord bless you and keep you this day.

This is a previous post but, I thought I would give you an update. We still pull this shoe lace board out often. Bug sometimes regresses with her skills. Sometimes she just needs to focus on working on her fine motor skills. This is one of the items that I still use often in helping her at home. She has more control of the board than a shoe. She can also move it to a position that is comfortable for her. Between motor skill delays and arthritis with her it's best for her to get in the best possible position. The reality is that the only time she really wears shoes that lace up is during horse therapy and when its absolutely needed due to weather. She only wants her Crocs and has a lot of sensory issues that go on with tennis shoes. I'm afraid she will lose the skill of tying her own shoes again. We had to retrain her a few times with this task as she wasn't using the skill. Bug is now 12. We started this endeavor of tying shoes starting at age 6.

Learning to tie shoelaces is a complicated task for any child. For my Bug, it has been an extremely hard task for her to accomplish. It has been an ongoing task for several years.  years. Honestly, I was at the point of being content with her just putting on shoes with Velcro straps. Bug's occupational therapist has also worked with her over the years with it. Bug has fine motor and gross motor skills that are extremely delayed. 

SHE DID IT! She tied her shoes yesterday. She came running to me after her occupational therapy session. She was hollering and has happy as can be. She sat down on the floor and said, "look Mommy what I can do by all by myself now!" She tied her own shoelaces. Everyone in the waiting room clapped for her and rejoiced with her accomplishment. She has showed everyone with much excitement.

This year I had Grandpa make me a little gadget to work with the kids at home. It has been very helpful with them learning the concept or should I say the art  of tying your own shoelaces.

All it consist of is a  piece of scrap wood 2x4 cut around a foot with two holes drilled into it. I then bought some shoelaces at the dollar store. Make sure you use two different colors.

Are you wondering why the two different colors on the laces? It helps them to see the differences in each step they are taking. They can see that the black and white have different functions. It is much easier to explain shoe tying if laces are different colors. Instead of saying “the right one” or “the one in that hand” you can say, “put the white one over the black one.” Different colored laces can make any shoe-tying technique easier. This is also a good time to help with the left and right. I would say, "black lace which, is your right hand" and so on.

We would put these in our workboxes once or twice a week. The lesson would go like this:

First of all I would do it in steps, I would make sure that the first step is mastered before you go onto the next step. Just step one took awhile to get across for my Bug. You don't realize how much work as just crossing the shoe lace underneath one another on the first step if you have any motor skill delays. We who don't have delays take the small things for granted.

1. Place the untied board on the table. Take a lace in each hand and demonstrate crossing the laces into an "X." Instruct them to insert one lace through the bottom of the "X" and pull both laces tight.

I won't go into all the step because there is all different kinds of methods. You will have to find which one works for your child.  I think I have tried them all. In the end it was the traditional method that worked for her. I thought it would be the two bunny ears loops! Here is a great website for teaching your kids that I found helpful.

I hope this simple gadget works for you. You should be able to find all these items around your home. Make sure that the laces are not shredded at the end as it will be easier if they are new. You can also put tape or a bit of glue on the end to keep it together if you are using old shoe laces. For me it was a matter of sensory issues, texture, and being a distraction for Bug. Also, when they do start tying their own shoes having not to deal with shredded laces will be much easier for our special kiddos who need a bit of help. How many times have you fought with trying to lace old shoe laces that are shredded. Trying to get those pesky shoe laces in the holes can be a pain at times. I prefer to avoid a major melt down with Bug and to build up her confidence by not having shredded laces.

Blessings to you all. What have you tried with your kiddos to teach them to tie shoes?

I am also joining a link up with all of our therapies being canceled to help me at home to be accountable to work with her more at home. Stop by, As He Leads in Joy blog and see what other mom's are doing with therapy at home.