Autism Christmas Resources

As I have said before, I love holidays......all of them! But Christmas is such a special time of year, and our family is already deep in Christmas festivities! However, this time of year brings lots of "non-typical" activities that we need to prepare our kiddos for in order for them to experience the warm feelings of Christmas.....instead of being terrified of the unknown!

I subscribe to many newsletters, and one of my favorites is Sandbox Learning Education Tools. I found them when looking for social stories, and they even have a free one about "waiting".....a common difficult concept for kiddos with autism to understand.

Well, today in their newsletter, they emailed me Strategies for Challenging Holiday Situations. It is a wonderfully concise article about things we can do to help our kiddos prepare for the new things that come up during the holiday season. Definitely check it out!!!! Maybe even print it & hang it on your fridge!!!!

Here is another link to a lot of free social stories....It's called KIDS CAN DREAM AUTISM WEBSITE! A very talented girl named Heather writes them & started this website because her 2 brothers have autism, and she wanted to help them & others! How awesome!

Not only are there changes at home during the holidays, but at school as well! Here is a great list of ideas for teachers as well as parents to help children with autism during the holiday season.....and after when it's time to get back to the typical routine! MAKING THE HOLIDAYS HAPPY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS.

And lastly, here are some great tips on how to handle specific situations.....traveling, shopping, family dinners, worship services, etc...Handling the Holidays with a Child on the Autism Spectrum.

These are much needed resources for parents/teachers/guardians of kids on the spectrum, but I think these ideas would be great for any kiddo! I hope you find them as useful as me!!!! Merry Christmas!!!

Ethan's First Funeral

The weekend before Thanksgiving was my Grandpa's visitation, funeral & grave side service. My family was able to attend all of these services, and it was a lot of "newness" for our Ethan. But I am pleased to report that he did very well!!!

All of these events took place at my Grandpa's home town which is located several hours from our home. My mom had the idea to go up a day early & get acclimated to the hotel & surroundings so as to not feel rushed as well as help out Ethan. Great idea! So, we left Thursday afternoon for the hotel. Ethan did great in the car, but he was super excited when he discovered that our hotel had a pool! Well, that night we swam & even got into the hot tub....which was his favorite.

The next day, my mom had several details to attend to, so Corey, Ethan & I were left with some free time. We saw a park close by & spent almost an hour playing there. Then, we thought it would be fun to go bowling. Although Ethan is extremely sensitive to loud noises, bowling alleys have never bothered him......strange, I know. We were trying to do as much physical activity as we could while we could. I knew that there would be a LOT of sitting & trying to be quiet, and in order for that to possibly happen, Ethan needed to do an equal amount of moving & heavy work....running, jumping, pushing bowling ball, etc.

Well, we went bowling, and we were the only people in the whole place! 40 lanes & just us three.....it was nice! But after bowling 3 frames, Ethan was ready to do something else. But we had prepaid for 2 GAMES!!!! So, it took some crafty parenting skills, but we all bowled 2 games & had a great time.

After that, we grabbed lunch & then went back to the hotel to have Ethan nap. He had been up very late the night before, so he took his nap without any issue. A rare & beautiful thing! While Ethan & Corey napped, my mom & I had coffee by the hotel's fireplace. It was really nice to have that time just us girls.

Well, after nap, we all got ready for Grandpa's visitation, and I was kinda nervous as to how Ethan would react to seeing Papa in a casket. Turns out that Ethan was very interested! He didn't ask me any questions, but he kept coming over & peeking inside at Papa. He never said a word....just kept looking. Finally, I reminded Ethan that Jesus took Papa's spirit home to Heaven, and we were just looking at Papa's body. (What a difficult concept to teach!) I told Ethan that all of the people in the church were coming to say goodbye to Papa. Then, Ethan, still looking at my Grandpa, quietly said, "Bye Papa." It was so tender & sweet & had a sad tone to it......yeah.....I lost it. Tears came so quickly & I couldn't talk, but thankfully my husband was right there to step in & take over the teaching moment.

I hadn't really thought Ethan would be all that interested in what was going on that weekend. I thought he would just want to play with his cousins. Earlier in the week, after Grandpa had died, I was crying at home. Ethan crawled up on my lap, and said, "Mommy, why are you sad?" So, I told him that Grandpa had died, but he was in Heaven with Jesus now. I asked him if he understood or had any questions, and he said, "No, I need to go click on the sheep." He in the midst of a computer game, and was more interested in the game than why Mommy was sad. LOL! So, I didn't think he would be so curious this past weekend.

But Ethan did well during the visitation.....mostly ran around with the other kiddos. At the funeral the next morning, he was such a wiggle worm in the pew & had to go potty about 3 times, but overall I would say he did well. It was a long service, and it was difficult for all the kiddos to sit still & be quiet. And at the grave side service, he was the same....wiggly & had to go potty several times. I'm so thankful that my husband is someone I can count on to "be in charge of Ethan" so I could sit with my cousins or cry or help my mom or whatever needed done. Thanks Corey!

After the grave side, our family took pictures & then went to eat. We had our own room at the restaurant because there was a lot of us, and Ethan decided to hide under the table. Typically, we don't allow Ethan do to this type of behavior but it had been a very overwhelming weekend for him, and we were quite noisy. We decided that Ethan needed the break more than anything. He was such a trooper this weekend, and it really helped make it easier for our family during a time of stress & grief.

It was a long & tiring weekend, but we all made it through! And now we can get back to our normal routine......oh wait! It's Christmas time!!!! Well, so much for typical routine!

Misdiagnosis???

I have many, many posts that I have written but never published. I could, and may still, eventually post about Ethan's Halloween, his GI visit, his swimming lessons, and so on, but not today. Today, I need to work through some thoughts.

Lately, people in our life have been telling us how well Ethan has been doing. They are seeing him making big giant moon steps, and he is becoming a new child. It truly is remarkable. Some even say, "If you hadn't told me that he has autism, I would have never known." Some are even doubting his diagnosis. Some are suggesting that we re-test Ethan to see if he would still have that diagnosis. That is how well he is doing.

I very much appreciate these compliments.....well, I take them as compliments. We have worked VERY HARD for the last several years & done all we can possibly do for Ethan given our knowledge & resources. So, these kind words are very inspiring to our weary family.

However, the thought that Ethan had a misdiagnosis is just absurd to me. It almost underminds Ethan's triumphs, and I am not about to take that away from him. This kid has worked very hard to overcome a lot.....and always will have to do that in order to thrive in this world. He will always have sensory issues, but we can teach him how to handle it. He will always have autism, but we can give him tools to work through the issues that he faces every day. He is showing so much growth & promise, and I am so proud of him.

Giving Ethan the ability to navigate this world in his skin is the best thing we can do for him. And that is what we try to do every day.....see the world from his point of view & help him to connect to it. This does not come naturally to Ethan....it is not innate. It must be taught to him on a level that he can relate to & understand. And that will always be the challenge. It's not easy but we try. And lately we are seeing big results. YEAH!

Maybe when Ethan is older we could consider re-testing him, but it's a bit early in my opinion. He has yet to start Kindergarten, and I want him to have access to any help he may need in the school system. He has so much life ahead of him, and I want to give him as many resources & support that he needs or wants. Ethan is such a smart & sweet little guy, and I want to give him the best chance that I can possibily give him. And, in my opinion, that means continuing on our current path.

I DO want to thank the many, many people that have encouraged us with your words of support. I'm soooooo glad that you can tell big differences in Ethan. He works so hard for such a little guy, and it's very nice to hear how other people can tell a difference in him. His behavior, his speech, his social skills, his independence......I LOVE to hear all about it!!!! I am one super proud Mama!!!!!!!! But as for a misdiagnosis.......no. There is no doubt in my mind that Ethan has autism. Otherwise, why would therapies geared for children with autism be working so well with him???? HUM?????? :0)

Ethan has autism. It is a part of him. It is his super power. And we love him just how he is! He is our joy, and I wouldn't change a thing about him!!!!!!!

Who is Team Ethan?

Someone recently emailed me with this great question: "You always seem to talk about 'Team Ethan'. Who is that? Who is included in Team Ethan?"

Well, when I refer to Team Ethan, I am talking about all of his teachers, therapists, doctors, co-ordinators, friends and family. But to break it down even more....other than family & friends....there are 26 people currently on Team Ethan!!!

1 Pediatrician

1 Preschool Teacher
2 Preschool Teacher Aides
1 Preschool Speech Therapist
1 Preschool Occupational Therapist
1 Preschool Librarian/Family Activities Director
1 Preschool Case Co-Ordinator

10 Therapists at Easter Seals Preschool....Developmental Therapy, Speech Therapy, Behavior Therapy, Occupational Therapy
1 Easter Seals Receptionist who Ethan LOVES to talk to!

1 Children's Pastor
1 Children's Pastor Associate
1 Early Childhood Co-Ordinator
2 Sunday School Teachers
1 Sunday School Class Aide

1 Swim Instructor

That's it! Isn't that awesome!!!! Now there are also MANY family members & close friends who are extremely vital to Ethan's progress as well.....but I think of them more as Corey & I's support team! They pray our family, encourage us when we are down, offer babysitting for those much needed breaks, ask questions, are interested in Ethan's progress, and add wonderful ideas & tools to help us parent Ethan. They are our "unsung heroes," and our family would not be where we are today without these people!

So, when I refer to Team Ethan, these are the people I am thinking of....and many other professionals have been on & off the list as Ethan has passed different stages. This list changes as he changes. New people come into our lives & others, sadly, leave our lives. But that is just another reason why I love this blog. Our family is able to stay connected with those who have touched our life (via living with autism), and they will always have a special part in my heart. We will NEVER forget any of you, even if we are no longer a part of your daily life.

There are no words to express what you have done for Ethan and, in turn, have done for us. Together, you have worked miracles in our child, and we are forever grateful to each of you. I can recall moments of celebration as well as frustrustion with each of you as we were trying to help Ethan the best we knew how. Glenda, I can remember you coming to my home as we decided what therpies Ethan needed, and how we celebrated that doors were opening for him. Katie, I remember you helping us work through Ethan's sensory diet while he was on the floor of your room kicking & screaming. You were so calm & encouraging, and the knowledge you gave us has been invaluable! And I have memories similar to this for each person that has ever worked with Ethan, and helped us how to really LIVE with autism.

So, even though I casually mention you as "Team Ethan" in my writings, you are VERY near & dear to our family, and we are so blessed to have each of you in our lives. GO TEAM ETHAN!!!!

Peace In the Midst of Sadness

My beloved Grandpa passed from this world on November 10th, and....thankfully.....I was there with him in his last hours. I witnessed this cherished man depart from this earthly world and enter into God's hands. It was so peaceful and beautiful.

My grandpa was a man of GREAT faith. Thankfully, this is something that I and so many others in my family share with him. I KNOW from the moment he took his last breath that he was with our Savior, and there was a celebration in Heaven. I KNOW that my grandpa was hearing what I long to hear when my time comes, "Well done Good & Faithful Servant!" And I KNOW that this goodbye will not be final.....we will see each other again some day because we both have a deeply personal relationship with Jesus. And this is my comfort & peace.

We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord. - 2 Corinthians 5:8

For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. - John 3:16

“His master replied, ‘Well done, good and faithful servant!..." Matthew 25:21

 
In the last moments of his life, many scriptures & songs came to mind. I remember reciting them to encourage my grandpa as he was "actively passing." Our entire family spent many moments singing to him uplifting songs about heaven & going home. And moments before he took his last breath, I was sitting beside his bed reading the Bible to him until we realized that the end was at hand.

All through my Grandpa's last days while we were gathering around him, the song I'll Fly Away kept running through my head. Especially the line, "Just a few more weary days & then I'll fly away. To a home where joy shall never end, I'll fly away." We were experiencing the weary days, but soon he would fly.

Once my Grandpa had gone to Heaven, this is the only song that is on my mind....I Will Rise. I am so thankful that my Grandpa & I shared our faith. It isn't something that he could pass down to me, but I had to find it myself. However, his Christian example was like no other, and that is an unbelievable heritage that I do hope to pass to my Ethan. Thank you, Grandpa, for your Christ-like example that you showed me. I will strive to do the same for my future generations with God's help.

Goodbye for Now, Grandpa

I will be taking some time off this week due to the passing of my Grandpa. Ethan & I would visit him weekly ever since he moved to a nursing home in our city. His absence will be greatly felt in our home.

Rather than write a post about my Grandpa, my cousin has done this for me. :0)

My cousin, also named Ethan, keeps a blog (www.JonesLife.net) about his life as the father of Quintuplets and their older sister. You may have even viewed their recent show on TLC, Quints By Surprise.

He has written a beautiful post about my cherished Grandpa, so I will just share that link with you. All I have to say is, "Ditto." Thank you, Cousin Ethan, for your words....Generations.

I will leave you with a few pictures of my Grandpa with his family. We will always love you, Grandpa!

Me, my cousin Grace, my cousin Jenny & my sister Rachel with our Grandpa.

Grandpa's Midwest Family

Getting a picture with my Grandpa: my nephew & niece & my Ethan.

Ethan Sandwich Game....Good for Proprioceptive System!

Recently, I have noticed that Ethan is needing more & more heavy work during the day. If he doesn't get a lot of this on a daily basis, he is extremely restless, more clumsy, and doesn't sleep as well. This summer it was quite easy to get in a daily "workout" because we had a pool in our backyard that we would swim in almost every day. Even when the weather got cooler, my husband would take Ethan outside on our large trampoline & jump for a long time. Now, however, it's darker earlier & getting colder so all of our outside things are becoming less & less dependable for us to help Ethan in this area. We do have several things inside our home (jumping on single trampoline, helping with housework using "big boy muscles", etc.), but Ethan seems to be getting bored with all of these things in our home. So, we have started to be a bit creative....

One evening when my husband had been gone all day & I was at the end of my rope with Ethan, I came up with a new game.....Making an Ethan Sandwich. Often, Ethan gets all of the pillows & blankets from all over the house & makes a big pile in our living room. He will jump on this pile, hide under the pile or even roll around in the pile....all good for his proprioceptive system. So, here's how it started....

After a day that seemed to never end.....we've all had them, right?......this mommy needed a moment to myself. So, I put Ethan on his iPad, and snuck off to my bedroom for 5 minutes of peace. Pretty soon Ethan made his way back to me. He crawled up on the bed & began to gather pillows for a pile. Knowing that part of his issues for the day was that his body was needing input, I started squishing him slightly under a pillow...something that we do a lot with our living room couch pillows. Ethan loves it & needs it. Well, to turn it into a game, we decided that the pillows were bread & we were making an Ethan sandwich.

I think because he is getting bigger, he is needing more pressure than previously, so that meant more weight than just one pillow. So, we added more pillows.....and labeled them as pickles, tomatoes, lettuce, bacon, ketchup, and other sandwich toppings.

Ethan loved it! We played this game for at least 45 minutes, and often times Ethan would just lay still once the sandwich was made.....a sign that it was working. So here are some pictures of our Ethan Sandwich game. Cheap, easy, and it worked! Ethan has asked to play this many times since. You can see how much it relaxed him in the pictures below....especially the one with his legs sticking out the back. A couple of times, I thought that Ethan had fallen asleep because he was so still! So, if this is something that your kiddo's system craves, try making a sandwich! It's delicious!!!!