Always Aware, Always Blue! Part 2

One of the questions I asked on social media was, “What do you wish people understood about Autism?”. The feedback is so insightful. As much as I enjoy hearing from parents, I found the responses from professionals in the field to be incredible. As a parent, there isn’t anything I wouldn’t do to make the world a better place for my child. However, all the teachers and therapists we have met along the way have been so caring and passionate. When I asked the question, I assumed I would only receive feedback from parents but I was so excited to receive feedback from those who serve the Autism Community so passionately. Here are some responses from a mixture of parents and professionals.

There isn’t a specific look to Autism and words such as “they don’t look autistic” can be hurtful.

We see this in our own family. Our oldest son who’s autism is more pronounced is regularly given more patience and understanding then our other two who are not as obvious. My youngest son is an angel at school and typically they will only see his rigidity when something changes in schedule or he has to adjust quickly. This usually comes in the form of concern over the change and pointing out that that isn’t usually how it goes. However, at home, he will come home and be beside himself. He will be easily agitated from the time he gets off the bus, yelling and screaming at me, hitting me, and meltdowns all afternoon. He is also the one that gives me the most issues in the morning with getting dressed because they have to be a certain texture and look, short sleeves don’t go with pants. It isn’t winter, so you can’t wear your winter coat and it is technically summer so I should be able to wear my shorts even though it is only 55 degrees outside. You never know what each individual’s challenges are and this goes beyond Autism, so treat everyone with kindness!

Those with Autism can’t be “fixed”. We have to learn the way they see and feel things and then adapt to that.

Love this one, Autism is not something that can be fixed. One of the greatest things I have learned is how amazing and incredibly different my kids see the world. It is unfair for me to expect them to enter into my world if I am unwilling to enter theirs. The way they see things is remarkable and the way they experience the world can be intense and sometimes too intense for them. There was one incident that stands out to me and it was a moment that was an epic fail on our part. Elijah does not like Home Depot for some reason, stores are difficult for him as is but he really dislikes Home Depot. However, one day we needed to run in there and get something and we thought he would be fine once we went in despite his protests. We were wrong, Tom had to make a very quick exit carrying Elijah kicking and screaming out. He finds the store overwhelming and we cannot fix that for him but we need to respect it. Life became so much easier once we stopped expecting them to do and act how we want them too. We remain flexible because we know that is challenging for them. They give some truly beautiful gifts. My oldest, when he tells me he loves me, it means the world to me because he is easily the most honest individual you will meet. He is sometimes too honest, he says whatever he thinks as fact. My daughter tells some of the best stories, they are almost believable. I love hugs from my youngest son because when he gives them to me they are worth gold because hugging is difficult for him, physical touch can almost be painful for him due to his sensitivities. We are continually adapting to the needs of our children but they truly have also given us some of the most beautiful gifts.

I wish people knew that just because an individual with Autism isn’t looking at you or is non-verbal, they can still hear you!

100% yes! I was recently in a setting with an individual who was nonverbal and the people who were around him were talking about him as if he couldn’t hear them. My heart broke for this young man. This was in a setting where they should have known better. No communication device or pec card system was set up for Him, this made me so sad. His inability to speak was not reflective of his cognitive ability. He could hear perfectly fine and process what was being said, he just was unable to use his words.

Our oldest son has a difficult time at making eye contact and is often seen to be in his own world, however, he hears everything. If I ever doubt that he heard me, I usually hear him repeating verbatim conversations from earlier in the day, this typically happens late at night when he should be asleep. Everyone deserves to be treated with dignity and deserves common decency. You would never walk up to a conversation and talk about someone who is right next to you as if they aren’t there. We shouldn’t do that with anyone. My youngest son tells me all the time, “Mom, I am always listening to you, even when you don’t think I am”. As creepy as that sounds, it made me evaluate how I talk when he is around.

None of these comments are meant to condemn anyone but to inform people. Up until the ’80s, individuals with Autism went undiagnosed and were diagnosed with many other mental health issues as well as in many cases institutionalized. We have come so far in our knowledge and research. However, if you are like me, I didn’t know before my kids were diagnosed. A lot of these misconceptions were misconceptions I held as well. This is why I love April because we have the opportunity to shine a light on Autism and educate to help provide a world that is more inclusive and sees the many gifts every individual has to bring to the world whether they have Autism or not. We all have a purpose and giftings and should be able to find a place where we can be an asset to society. Autism should not be the defining factor of what an individual can contribute. Individuals are so much more than there diagnosis!

Always Aware, Always Blue: Part 1

Today, April 2nd is International Autism Awareness Day and April is International Autism Awareness Month. This is the month where we place blue lights on our house, blow bubbles and wear blue in hopes that it makes the world a more inclusive place for our children. We have three beautiful children who are all on the Autism Spectrum. Autism used to be a really sad word in our home. As I have shared in another blog, at the beginning of my kids diagnosis’ all I could see was the challenges that my kids’ would have. I was worried, nobody would see the potential that I could see in my kids. I was worried that people wouldn’t love my kids due to their behaviors. Then the selfish parts of myself worried people would judge me for their behaviors. The truth is that some of these are unfortunately true due to a lack of education. For the most part, I have come across very understanding people and people who believe in and love my kids. Nevertheless, this is why we have Autism Awareness Month, to raise awareness and advocate for more inclusivity

In raising awareness and advocating for inclusivity, I will be having guest bloggers throughout the month of April who have different connections to the Autism Community. Tom and I have truly met some of the most amazing people in our Autism Community. We cannot wait for you to meet them as well.

This week I asked a couple of questions through my social media to gather some questions about autism as well as what people wish others knew about autism. I will do my best to address and share some of these. This will be a two-part blog post. There were many questions to address, however, these seem to be the most frequently asked. Just a reminder, I am a mom and by no means do I pretend to be an expert. I can only speak to my experience as well as what I have researched.

How is Autism Diagnosed?

The diagnosis process was very different for my oldest as compared to my twins. They always hope to diagnose children early so they can receive early intervention. The process for the twins took about a year from the time we started having concerns at 2. They were closely monitored by a Developmental Pediatrician who eventually referred them on to a Neurodevelopmental Pediatrician. My oldest was evaluated by several people who observed him. There was a Neurologist, Speech Therapist, Occupational Therapist, and a Psychologist in the room. In both evaluations, they looked for speech delays, social delays, physical delays as well as repetitive behaviors and rigidity. They also looked for sensory aversions as well as sensory seeking behaviors. They use the DSM-5 to diagnose and in order to be diagnosed your child has to meet the criteria.

This is a very good question because I have come into contact with a very small population of people who have felt that parents seek out an Autism Diagnosis as an excuse for there bad parenting. It would be very difficult to receive an autism diagnosis for your kid due to bad behavior. The DSM-5 criteria wouldn’t be met simply due to negative behavior. This brings me to the next question.

Temper-tantrums and meltdowns, is there a difference when it comes to Autism?

The answer is yes! My children have both! The difference is the level of control and duration in my experience. There are some behaviors my children can control and others in which they cannot. Various therapies work together to help an individual with autism control the uncontrollable behavior. My youngest son, can have full-on tantrums just because we didn’t get him what he wanted and when he wanted like his neurotypical peers. However, my son can also come home from school after having held himself together all day at school and then come home and one little thing is enough to send him from 0-10 in a matter of seconds. The duration of this meltdown can last from as little as 20 minutes to a couple of hrs. The behaviors that come out can be aggression, throwing objects, not hearing what I am saying. Typically we have to ride these out because, he will not allow anyone to touch him in these moments, talk to him or offer any comfort. This is heartbreaking as a mom. However, it does look like a temper-tantrum but does not look typical for his age and lasts longer than what is typical.

Do all Individuals on the Autism Spectrum have Savants like ‘Rain Man’?

No, every individual on the Autism Spectrum has various strengths and weaknesses. There are individuals who have remarkable abilities regarding memory but not everyone can calculate intense mathematical equations or count cards. However, it is not unusual for individuals with autism to have a great interest that they are experts on. My oldest who is eight can tell you every flag of every country in the world, he is humble enough to believe that Tom and I also know every flag to every country. Moses is a deep intellectual thinker and will stump you with many things that most adults don’t think of. My daughter has an incredible memory and only has to hear a song, book, or movie once before she has it memorized. However, they do not have Savants but are incredibly smart.

By listening and asking questions we can create a more inclusive world. Speaking for myself, I would much rather someone ask me a question about my children to gain understanding then to distance themselves from my child due to a lack of understanding. Please, keep asking questions and listening. Show empathy and kindness even when you are uncomfortable and don’t understand. There are challenges that we all face whether we have a diagnosis or not, it is important however that we are known for who we are and not by our diagnosis. Everyone deserves to be known and not stigmatized. Part two to be posted tomorrow!

Coronavirus, No School and Moving!

You may have noticed that I have been behind on posting. Life is crazy right now as we all know. Coronavirus has spun us all for a loop and we just so happen to also be in the middle of selling our house and moving state. We move in only a couple of weeks, I did not anticipate homeschooling, packing boxes and showing my house all at the same time. However, if you know my family at all… you would say, of course, you would be moving in the middle of a pandemic. That is how our life seems to pan out, never straightforward, ha!

Saying all that, my kids have been doing incredible. We have been having a lot of fun. Tom is home as well so that has been a huge help and has made for some incredible quality family time. We have always respected the educators and been so grateful to them but my appreciation has definitely only grown. We have three kids and they all have different curriculums they are doing. Friends, if ever I even thought homeschooling was a good idea, I can officially say that I do not have what it takes. Teachers, you are amazing. Special Education teachers you are heroes, seriously. How you cater to multiple needs and prepare various lesson plans to accommodate various needs is phenomenal. When school starts again, I guarantee my kids will also have a new appreciation for there teachers after having had Teacher Mom for several weeks.

So as I said we are moving! We will be moving to Central New York in the middle of April. Tom will be going on staff as an Executive Pastor at an incredible church. From the first time we went up there we just had a peace that the church would be an incredible church to be apart of and we just love the Lead Pastors and the staff. We are so excited to be up there and to get started. God has been so amazing in how all of this has come together.

We have been blown away with how everything has fallen into place. Our kids were able to meet there principal and have a private tour given by him. The school is only a four-minute drive from where we will live and we have only heard amazing stories of how great the school district is. The special education department is dedicated to providing support as well as inclusivity. We are excited to see the growth in them through this next season. There are so many small things that God has done as well that would seem silly to others but mean the world to us.

Last year I read the verse from Isaiah 43:19 and immediately knew that it was for me. “But forget all that— it is nothing compared to what I am going to do. For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland”. At that time we didn’t know we would be transitioning from South Jersey but I knew that God was doing something and it was going to be new and exciting. Here we are a year later and moving states and it is not short of excitement.

For many, this season may feel like a wasteland. There is so much anxiety due to the economy and this virus. People are losing their businesses and worried about losing their homes. There is hoarding to ensure families are taken care of. People are buying out moving boxes, I know this because I need them to move and they are sold out at some places. Why? My only assumption is to box up the extra food and supplies. This season might feel and look like a wasteland, you may be overwhelmed with anxiety and fear. There have been times where I feel the anxiety and fear because we are an immune-compromised home. However, as a family we will choose to set our eyes on the pathway through the wilderness, on the rivers, the places of refreshment. This season will not last forever.

Look to the future with hope, there is a pathway that will lead out of this wasteland. There are little pockets of refreshment, whatever that may look like. We are resilient and as we continue on this path, the pathway includes quarantine and safety but it does not mean we have to be overcome by the fear of the unknown. Something I am very certain of is that when there is a season of uncertainty and loss of stability, new and fresh dreams are born. What dreams do you have? How has your perspective changed for the better? How have your relationships grown against all the odds? What are you hopeful for? Take some time to make room for the new! There is something new God is doing!

This last season, at times, felt like a wasteland because we didn’t have any certainty but these verses provided a peace that God was leading us into a new and refreshing season. It gave us the hope that our best seasons were ahead of us. When I think about this move to New York, I see God’s faithfulness and favor on our lives. It overwhelms me with how good God is, He doesn’t owe me anything and yet He gives good gifts. When the world’s promises are empty, His are concrete. God doesn’t provide pathways out of dark seasons because He has to but because He love us and because He gives good gifts. There are good things ahead, find the pathway and look for His goodness.

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?