The First Ups and Downs of Autism

In 2015, my oldest son Elijah was diagnosed with Autism. Autism was new to us, I knew very little about it. We had known for a while that our son wasn’t typical of his peers and we had shared concerns with Pediatricians who responded with all children are different, some children take a little longer to communicate, to speak in sentences, etc. In my gut, I knew that something else was going on but was happy to have the doctors put my mind at ease. However, I will forever remember the day when I learned about autism.

We lived in a small town in Montana at the time and our next-door neighbor was out of town and he had a lady house sitting. She had a little boy about Elijah’s age and she came over so the boys could play in my yard. She began to tell me about her son and how he had been recently diagnosed with Autism. Out of curiosity, I asked her about autism and how they diagnose. As she began to tell me about the behaviors, the learning delays, and the sensory aversions her son showed; my heart sank. She was describing my son.

My son, Elijah, spoke little for a three-year-old, he knew all his numbers, shapes and alphabet but he could not say, ‘Mommy, I’m thirsty’. Elijah rarely engaged with me, I would try to engage with him but I was never sure if he even knew I was in the room. Blocks with letters and numbers were his favorite, he would line them up and yell out the numbers and letters on them. Nightime was difficult, he wouldn’t sleep and we had tried everything. He would regularly stay up until one or two in the morning engaging in destructive behaviors in his room all while rehashing his day by repeating word for word what he had heard throughout the day. Noises were difficult for him and he would regularly say ‘ what’s that?’ when the furnace turned on or someone was mowing their lawn. If it was a loud noise, he would cover his ears and occasionally scream or cry. These were all things that this lady was telling me about and then she said to me, ‘has your son ever been tested’? “He seems to show some of the same signs as my son”, with that sinking feeling I held it together and asked how to began the process for screening? Since, that conversation, I have lost touch with that lady and her son but I will forever be grateful to her. She did for me what no pediatrician or any friend had done, she educated me and then was honest with me about my son.

After that conversation, I spoke to Tom on the phone and told him. It took us a few months of denial before we reached out for the screening. After being put on a waiting list, Elijah was diagnosed at almost four with Autism Spectrum disorder. My heart was broken as they explained to us the challenges he would face. In many ways, it felt as though our lives had changed overnight even though Elijah was the same Elijah he was yesterday. The weight of grief I would carry over the next year sometimes was crushing. We all have dreams and aspirations for our children and I felt like mine had not just changed but had been demolished.

Many well-meaning people would talk to me about the vaccine argument, special diets, essential oils and other success stories they had heard. A lot of these were more painful than helpful because they all pointed to my son’s challenges. It felt as though all the advice and suggestions were to lead me to thoughts such as ‘Maybe if I hadn’t vaccinated him, he wouldn’t have autism’, ‘maybe if I did XYZ it would cure him’. All I wanted was my son to be accepted and it hurt to have well-meaning people trying to offer solutions to change my son or offering reasons as to why he had autism.

Every waking moment was spent researching Autism and all of the therapies he needed and special schooling accommodations, all of which were not offered in the small town we lived in. Then I would cry myself to sleep at night thinking about his future and our future. All the research in the world would not change his diagnosis but it could help him with the challenges he faced. So, we moved to New Jersey where they had the best services for Elijah.

We plugged Elijah in an incredible school which I will forever be grateful for and enrolled him in Speech and occupational therapy. We were doing everything we could but it was hard. Life was difficult. Parenting was heartbreaking, as a mom, I wanted to comfort my son when he was hurt or upset. He didn’t want me, he wanted to be left alone. When I would come near, he would scream and get more upset. Tom would want to play with him and he showed very little interest in him and sometimes would become annoyed at the disruption. Elijah showed little interest in us or his siblings.

It wasn’t long after we arrived in NJ that we began to see delays in the twins too. The mom guilt set in and I began to think that maybe it was my fault that they had some delays because so much of my focus had been on Elijah. However, in 2017, both of my twins were also diagnosed with autism. Moses, was very aggressive and anxious all the time. Esther was reciting whole movies after having only watched them once or twice. The days were filled with hitting, biting, throwing, attempts to elope and meltdown after meltdown. It was exhausting.

This all sounds as if I am gearing up to tell you about this huge turnaround, but I’m not. What changed? My perspective changed. Every day had become a day to survive, not to enjoy. Every day was another reality check of how much work it was. For a long time, it felt like I was living for bedtime but often that came with its own challenges, many sleepless nights, laying in beds for hours until they fell asleep.

My perspective changed when I realized as I was dwelling on all the things we couldn’t do as a family and all my kid’s challenges, I was missing out on the little victories. They were passing me by, I wasn’t enjoying my children. I loved them so much and it hurt so much to see their challenges, that was all I could see. All I could see was my inadequacies as a parent every day, my own selfishness which was followed by guilt. Once, I recognized that there were challenges that my kids were overcoming and that I needed to celebrate those, my perspective began to change.

There have been so many amazing firsts, the first time Elijah said hello back to me, or when he said ‘can I have some milk’ as opposed to just milk. Then there was the time when he surprised us all and said hello to Tom unprompted followed by a ‘how was your day?’ Once I stopped expecting my kids to join my world and I began to join theirs, life has not stopped being filled with new perspective and laughter. Getting the opportunity to see how my children view the world is a gift that I will never take for granted. My children have many challenges but they have so much to offer this world. They have changed my world and how I see it. There are new accomplishments every day that may seem small to others, but they have brought me so much joy and pride in them. They are amazing and the amount of work, effort, and endurance that it takes for them to overcome these challenges deserves dance parties, high fives, and ice cream.

In our household we truly celebrate everything. They are beautiful gifts and are a joy to everyone they meet. My daughter, Esther, impresses me daily with her ability to memorize whole entire movies or songs after having only seen or heard them once or twice. My son, Moses, is so inquisitive and is amazing at creating these incredible inventions such as catapults, laptop stands, comic books, envelopes, maps, board games, etc. Elijah knows almost all of the countries of the world and their flags. They are amazing as they are and I am blown away regularly with the fact that I am their mom. Once my perspective changed, I began to enjoy and celebrate there strengths and accomplishments more. Their challenges have not gone away, some have gotten easier while some are still very difficult and heartbreaking for me to watch at times. Those feelings of heart-break and frustration no longer occupy my every day, my gratitude and pride in them do.

Maybe you can relate to my story or maybe your story is different. One thing that I know for sure though, is that when we learn to be grateful for what we have and rejoice in the small victories, we gain perspective and more joy than we could have imagined. There is always something to celebrate even if it is just getting out of bed in the morning or checking one thing off your to-do list. Life can be overwhelming when we can only see the challenges. What are the little things we can be grateful and proud of today?

Small Victories Mean Big Celebrations

The most important and life-changing lesson my children have taught me is to stop and celebrate the small victories. When my three kids were diagnosed with autism, there were a lot of challenges and hurdles that we knew they would face and that we would face as a family. For a long time, I was overwhelmed every day by the day and its challenges. There are still days like that, where I feel so overwhelmed by life and all its uncertainties.

There are many things are very challenging, when you have children with autism. Going to a restaurant, I better have my running shoes on and bill paid at the beginning. If I want to take all three kids to the store by myself, yeah, that never happens. There are so many stories I can tell you about where it all went wrong, some highly embarrassing, some terrifying, some heartbreaking and some just flat out frustrating. However, I will save those for another time.

Perspective truly is vital to contentment and joy. By no means do I have this down. There are days where I am just sad or overwhelmed by the challenges of life and can’t seem to get myself to see anything good. However, I am learning that there is always something to be grateful for and always something to celebrate. There are so many highs and lows in life. Life can be unpredictable and can really throw difficult things in our way. Even amongst all of it, there are little moments along the way to celebrate. Some days it may be that you chose to get out of bed, or that you have a bed that offers you comfort and rest when it is too hard to get out of bed. When we celebrate the small victories in life, it doesn’t mean denial of your current season or that we don’t allow ourselves to grieve. Acknowledging the small victories gives us hope. Hope is important and vital to survival. Hope will get you through the most difficult of seasons.

When I began to celebrate the small victories in my kids, it was hard not to be grateful. My husband and I are so grateful for the community and team of therapists and educators we have around us. They have seen me on my darkest days and have encouraged me to see the accomplishments and growth my kids have made. These people are superstars in my life and have inspired me in so many ways. If you don’t have people around you that do this I would encourage you to read my last blog. These people are largely responsible for the victories we get to celebrate.

My oldest son, Elijah has known the Pledge of Allegiance by heart for years now and he could be heard around the house saying it and yelling a big ‘Amen!!!’ at the end. He is incredibly smart but doesn’t always see the value of sharing it with others. Recently, Elijah not only recited the Pledge of Allegiance over the intercom for the school but also read out the announcements. Elijah saw value in reciting it in front of his peers, this was a victory in our books and was celebrated. Elijah rarely does what you ask just because you ask. Often, things need to incentivized and even then sometimes it just doesn’t happen. A couple of years ago I tried to get Elijah to have school lunches in hopes that maybe he might see his peers eating certain foods and try them himself. It was a fail, he is such a picky eater and there is no incentive big enough to get him to try new foods. This year, however, I decided to just mention to him in passing that if he sees something he wants he has lunch money on his card and he can try it. To be honest I wasn’t really expecting him to do it. He came home very excited to tell me that he had tried a peanut butter and jelly sandwich. I have never been able to get him to try a PB&J. We celebrated. There was jumping, there were high fives and lots of praise! It may not seem like a big thing but it was a victory that gave me hope that one day maybe we will try to eat vegetables other than pickles. In those moments I could say to myself, he’s been reciting the pledge for years or it was just a PB&J, it wasn’t something healthy. However, it isn’t helpful to my children or me. These are all small victories that will lead to bigger victories and that fills me with hope.

If you are anything like me, you are hard on yourself and your worst critic. At the end of the day when that voice says you didn’t get everything on your list done, you can choose to celebrate what you did get done instead. If you are in a season of heartache, I have been there a few times myself and there were days the pain felt too much and I couldn’t see anything good and honestly sometimes didn’t want to. If that’s you, you will dance again. One moment at a time, one step at a time, you will get there. The victory in these seasons is that you survived another day when you didn’t think you could. For that you are courageous.

Cheerleaders and Critics

Last spring I signed the boys up for a soccer program that they have for children with special needs. The program is great, they teach them soccer skills and then at the last practice they play a game with the parents. The plan originally was for Tom, my husband to go with the boys and Esther and I were going to have some girl time every week. However, Tom ended up having to work, so I had to take the boys every week and Esther had to watch the boys practice.

I thought that Esther would be upset at the thought of not being able to play, but she wasn’t. Instead, she took a self-appointed position as the team cheerleader. She would stand on the side yelling, “give me an A, give me a P, give me an R, give me an E, go Elijah and Moses”. Esther may not have been able to spell or read, but it did not put a damper in her spirit. She was doing ‘cartwheels’ and leg kicks and everything. She could have been jealous that she wasn’t the one playing or she could have called out everything the boys weren’t doing but instead she chose to cheer them on. She wasn’t calling out where they lacked but she was calling out there potential to be superstar soccer players. I love my little girls’ spirit.

If we lived in a perfect world and were surrounded by people who cheered us on, we would truly believe the sky was our limit. We wouldn’t have any inhibitions. We would truly excel in our talents and gifting. However, we do not live in a world where everyone is cheering for us, there will always be critics. It has been said many times and in many different ways, that who we surround ourselves with will determine where we go. Sometimes we can control who we are surrounded by and then sometimes we just simply can’t. We need to identify who’s voices we hear the loudest. Sometimes the line can be a bit blurry of who are critics are and who are cheerleaders are.

One thing we do know about cheerleaders is that they cheer whether their team is winning or losing. It doesn’t matter if their team has a slim chance of bouncing back, cheerleaders call out the best in their team. After-all a cheerleader has seen their team at their best and knows what they are capable of. They know their strengths and they know their weaknesses. However, they are there to cheer on the best in there team.

If you are surrounded by critics, you will only see your shortcomings and you will avoid risk at all costs. After all, risk may lead to failure and failure may reveal your own weaknesses. Your weaknesses aren’t safe with critics. Critics like to focus on other’s weaknesses and rarely get to know your strengths or appreciate your strengths. Listening to critics will evoke fear and you will tend always lean towards the safe choice or stay put. Fear will also cause you to over-analyze your decision-making abilities.

However, cheerleaders will call out the potential that you may not even see in yourself. When you feel like giving up they are the ones reaching out to you and encouraging you, telly you that you’ve got this. Find those people who see the best in you, who will pull you up when you need to be pulled up and who will even push you when you need a bit of a push. Cheerleaders will remind you of your strengths when you feel like you have failed and push you to try again.

There are many seasons where I have felt overwhelmed by critics. One particular season comes to mind where I thought that the people I had surrounded myself with wanted the best for me, that there harsh words and critiques were there to help me. That may have even been there intent but it just left me feeling small, incapable and not enough. I wanted to be teachable and take in all the feedback because I wanted to be a better me. This individual had told me I was too loud, attention-seeking and prideful. So I felt I needed to be quiet, never talk too much or joke around in case it was perceived as attention-seeking and that I needed to fade into the background to become humble. This person also had convinced me that those who cared about me most were not good for me. I had eliminated all the cheerleaders in my life and had believed the very worst about myself.

Once I realized that this person’s voice needed to be removed from life, I made drastic life choices to ensure the voices in my life were positive voices and that they were people who genuinely wanted to see me do well in life. That season of life taught me to be very careful with who you allow to influence you. That season helped me evaluate myself and recognize the areas where I was at risk of being a critic.

Regularly, I ask myself am I a critic or a cheerleader to those around me. I know which one I want to be. Cheering people on will always cost more than being a critic. It takes patience, being supportive, and being there for the long haul. Oh, but when they win, you feel like you win too. Critics don’t plan for people to succeed, they plan for people to fail. Critics hone in on every mistake. We don’t cheer for people because they are perfect but because in spite of not being perfect, people do succeed.

Maybe you don’t feel like you fit into the role of player, critic, or cheerleader. Maybe you have sitting on the bench. I want to be the one to come along you and say it’s time to get up, you got this. You have what it takes. We might even fail, but we are going to fail together until we win! Everyone has there unique part to play. If you need to sit out on the bench for a bit to catch your breath or relax, that’s ok, just don’t stay there. The world needs you and what you have to bring.

Imperfectly Beautiful

As you can see from the picture, I have this placard hanging in my house. You can see the cracks in the heart and it looks outdated and worn out. From looking at it, you wouldn’t know the story behind it or the journey it has been on. It isn’t perfect but it is Imperfectly Beautiful and it means the world to me…

Over ten years ago, I was holding the broken pieces sobbing uncontrollably. My heart was broken in a million pieces and I just so happened to be holding a broken heart that was so much more than a gift. It was a gift my brother had given me for Christmas. I had packed it so carefully and put it in my suitcase for safekeeping. Now it was broken and it would never be as it was again. Devastation was an understatement of how I felt.

We were moving back to the States from Australia, so we had packed up all our prized possessions and were stopping off at Toronto for some of our best friends’ wedding before going back to Montana, where my parents lived. One of our friends was bringing up our suitcase when he had noticed that the placard had been broken on the plane. Our friend had no idea of the importance that it held to me and was caught off guard by my uncontrollable crying. After all, it was just a placard, one I surely could replace. He didn’t know it was from my brother.

My brother, Timothy had passed away only a few months before that. He had passed away only 3 days after I had opened that gift. My mom had told me, he had spent a long time putting thought into and choosing that specific placard out. My husband and I had just been married in November and he wanted to give us a gift for our new home. Three days later he was gone and I was shattered. This was the last gift I had received from Timothy, it was so much more than a placard. It was one of the few tangible things of Him I had left to hold onto. Now it would never be the same, I couldn’t help but think that the broken pieces I held, that were once a heart was how I felt. I felt like my heart was broken and could never be put back together again.

My husband held me while trying to comfort me by assuring me it could be glued back together. However, I just wanted it to be like it was before it was broken. I wanted everything to be like it was before my heart was completely and utterly broken a few months before. Life wasn’t fair and it was hard to imagine it ever being good again. After all, does a broken heart ever look or even operate as it once did? Can something broken actually be beautiful or is it just broken?

You see, that placard represents my beautiful brother and his beautiful thoughtfulness but it also represents so much more. I survived one of my darkest seasons. Although I still feel the brokenness of his death and absence from my life, I AM HERE and I am so grateful for the time I had with him. I am ok and it is a part of my story, it isn’t perfect but it is beautiful. That season changed me, I am not the same person I was and that is ok. I found courage that I didn’t know I had in me, I found out that actually the human body can endure tremendous amount of pain and still survive even when it feels like you can’t. I also found that God surrounds you with the right people when you need them at the moment you need them. These are all invaluable lessons that have helped make me who I am today.

As you can see from the picture, it was glued back together carefully by my wonderful husband and it has lived on my walls in five different houses through many different seasons. There have been many seasons that have come and gone since that season and some very painful. There have been seasons where I have remembered to see the beauty in those difficult and unexpected seasons and then there are seasons of relearning, relearning to breathe and know that you will be ok. In these seasons, God has been so faithful to remind me of who I am and whose I am. Can you see my brokenness? Absolutely, I am still being put back together but not so I can be the same as before but so that I can tell my story, my Imperfectly Beautiful story.

We can’t always see the pain and heartache in each other that has shaped and made us who we are. We all have Beautifully Imperfect stories and it is no small thing that you are here to tell it. You have survived and maybe just maybe gained some invaluable treasures despite the pain and heartache along the way, I know I have. I don’t know what dark and difficult seasons you have gone through but they don’t disqualify you. They are a part of your story, just a chapter, not the whole story.

Freedom and Uncertainty

For the last couple of weeks, I have been thinking about the Israelites during the exodus.  There have been many messages on the Israelites lack of trust in God’s faithfulness and I have often pondered it myself.  How could you doubt God after having seen him part the red sea, protect you by a pillar of smoke/fire or feed you with bread from the sky?  God had gone above and beyond what they could have imagined as slaves in Egypt. God wanted to free them and had freed them. They hadn’t reached their destination but God had set them free and they were being guided to there promise land.  Why would they ask to go back to a place of slavery, a place that they were so desperate to leave?

Maybe they weren’t desperate to go back to slavery but maybe they craved familiarity, stability, and certainty.  FREEDOM meant a lack of certainty, it was unfamiliar territory and most likely felt unstable at times. They didn’t have a home and they didn’t know when they would feel settled.   They had seen God’s faithfulness but they were uncertain the FREEDOM was worth the cost. They were doubting whether God’s promises were worth it, whether God’s best was truly the best.

Have you ever found yourself in that place?  Have you ever wondered if your journey to FREEDOM is worth the uncertainty and unfamiliarity? I know I have.  FREEDOM doesn’t always happen instantaneously and we will always need freedom as part of God’s refining. FREEDOM is hard and we can become overwhelmed by the hard rather than God’s faithfulness.  The challenge is to remain thankful to God in the process and to worship Him for the victories we have seen and the victories we have yet to see

There was a really unhealthy season I found myself in years ago and when I found my way out of that season, there was a relief.  However, the journey to FREEDOM and forgiveness was long. There was a choice that I had to make, I had to truly let go of that season even though there were many times I would reminisce about the good aspects of that season.  In some ways, I wanted to go back to what had been familiar for years because there was a level of certainty but I knew that God’s plan for me was greater than what that season had provided. Even though there are some aspects of that season that at times make me sad and frustrated, I am proud to be on the other side of that season.  The season of FREEDOM and healing that followed has helped me grow into who I am today. There is no way I would want to go back to that season or wish that I was still in it. The FREEDOM I experienced and the seasons that have followed are far better than any loss that I had felt. 

FREEDOM is worth the uncertainty that you may be facing.  It is worth the uprooting you may be experiencing. Ultimately you will get to the other side and you will confidently be able to say, I am so glad that I chose freedom over immediate certainty.  Your journey is not by accident and God has a plan and His plans are good.