I can’t believe a whole year has passed, but it’s here again today – World Autism Day 2021. I thought long and hard about what I wanted to write about for this year. Again, I am so happy to be collaborating with my friend, Jessica Holley, from at @Blessedjess. This is our third year doing this together and I am so honored to be able to share this very special day for our families with her.
We weren’t sure what we wanted to share this year but, after thinking about it and tossing around a few ideas, we were able to come up with this year’s theme. I decided to ask my followers on social media what questions they had about autism. It could be anything from questions about Michael’s autism diagnosis, his therapy, or being an autism mom. As always, my friends did not disappoint, and they sent me so many excellent questions. I’m going to answer those questions here, but coming soon, I’m also going to share on my YouTube channel as well. In addition to collaborating with Jessica, I also asked some of my autism moms who follow me to share what they would like everyone to know about their child with autism. I’m grateful that this platform has given us all a voice to be able to express how we feel, educate, spread awareness and hopefully develop more acceptance for our children and our families. This is so important to us all. Whether your child’s disability is autism, down’s syndrome or cerebral palsy, all of us want you to know there is so much more to them then their diagnosis. So, from the bottom of my heart, I want to thank you all for allowing us to have this day to share our love for our children and have the opportunity to educate and advocate for a more inclusive world for our families.
Now let’s get to the questions!
How did you feel when he (Michael) was diagnosed?
It was probably one of the most difficult days of my life. Hearing the doctor very abruptly blurt out, “Yeah, he has autism,” was awful. She was very nonchalant, like it was just another day at the office for her. By her, I mean the Pediatric Neurologist who initially diagnosed Michael. I also must share that two months before Michael’s diagnosis, I lost my mom to cancer. I was already very depressed and I’m afraid the autism diagnosis took my mental state down to a whole other level. The one thing I can say is, I already had a gut feeling that she would say he had autism. I had friends whose siblings had autism; and, even though I did not know firsthand what their life was like, I was familiar with a few of the hardships.
I felt very lost in the beginning and even now, the feelings can come back without warning. I felt alone then and not having my mom to help me during that time made things even harder. I had way too much to deal with in a very short amount of time. The process of getting through the diagnosis was and is very slow. I also wonder if I would have been able to handle it better if my situation were different. I think my circumstances made it so much more difficult. I, of course, had my husband’s support. I would have never made it through that without him. He is always more optimistic than me and, at the same time, he is a realist. He has never sugar-coated anything so, with him by my side and by our son’s side, I knew we could get through anything.
The one thing that I wish I had done differently is not allow myself to get hung up on the doctor’s words and opinions. Michael’s first Pediatric Neurologist had the audacity to say, “Hopefully, in time, he will grow out of this.” I will never forget that. She said or suggested that Michael could actually “grow out” of autism. I hung onto that, although, knowing deep down, there is no growing out of autism. Yes, things can improve, but it is not something you grow out of. The second thing she said, and what really was the deciding factor in finding a new doctor, was when we returned a year later for another visit. She looked at Michael for a few seconds and said, “Oh my God, he’s still not talking?! What are you doing?” She really caught me off guard and I left the office annoyed, but knowing that was it for her.
Although Michael’s initial diagnosis and prognosis was difficult, we have seen progress. The progress is slow, but it is still progress. As the years have gone by and Michael has progressed, there is always something else that comes up. My understanding is this is typical. Our autism journey will never end, but we are always hopeful that Michael will have a bright future.
It took me a long time to get where I am now with his diagnosis. I am not going to say it does not really bother me at times. It is difficult, but there are some beautiful moments along the way. I love to see Michael communicating, learning a new skill, or just seeing him happy. His biggest accomplishment this year is a leisure activity we’ve been working to teach him for quite a while. He will now sit independently and watch a TV show.
How did you know something was wrong?
Michael was hitting all his milestones up until a little after a year old. Michael has a twin brother and I could tell the differences between each of them. Although Michael started to walk first at 14 months, it seems after that he slowly started to change. I could not really pinpoint what was different and that was frustrating to try to explain to his pediatrician. As the months went by, I just had a gut feeling that something was not right. He did have eye contact; he was not a toe walker. He was babbling and starting to say a few words. By October of 2013, I knew for certain that something was not right. After talking again to his pediatrician, even though she insisted every child’s development was different, she gave me the information to have him evaluated.
I had both boys evaluated at the same time and the results proved that Michael was very behind and that Alex could also use a little assistance. When the evaluation was completed and presented to us, I was extremely overwhelmed. I remember asking from the very beginning, did they think Michael had autism? No one would answer me directly. I know now that they were not able to share their opinions. The Early Intervention Team suggested Michael would need EI twice a week and Alex once a week. About a month into EI with Michael, his therapist asked if it would be okay for a Behaviorist to come and observe Michael. We agreed not knowing exactly what he was observing. After he spent some time with Michael, he very nicely said, “I would like to suggest taking Michael for an evaluation with a Developmental Pediatrician.” He told us it could take several months to get an appointment, but felt it was necessary. To everyone’s surprise we found a doctor to take him right away. The wonderful (not!) doctor I spoke about previously had an opening, so we took it. At 21 months old, Michael was diagnosed with Autism. Even though, I knew deep down that he had autism, it was still very upsetting to hear.
Is Michael able to socialize with anyone other than close family?
Yes, Michael is very social. He loves to be around people and interact with them. He is a big hugger and, although he may not be able to communicate with words, he is able to interact. It can be difficult to understand what he wants if you are not familiar with Michael. He does use his AAC device (Augmentative & Alternative Communication device) while at school and he is able to communicate effectively with it. We will occasionally use it at home but, for the most part, we already know what he is asking for. He also loves to be with the kids in his class. This past year has been very difficult for him with virtual learning. He loves to be with people and, hopefully, that will change soon.
How do you cope with the unknown?
To be honest, this is something I am consistently working on. This past year, I made a conscious decision to try and focus on the here and now; but occasionally, the worries of the future come creeping back. Whereas most parents’ responsibilities of taking care of their children end when they turn 18, a special needs parent must think beyond that and even when they are no longer living. It is a lot to think about. As the years go by, you will have to address these issues. If you are just starting your autism journey with your child, my suggestion is to focus on what you can do right now to help your child. You will, no doubt, be inundated with doctor and therapist appointments. It is important to get them set up as soon as you receive their diagnosis. Once you have that in place and things are moving along, you can try to start thinking about the future. The beginning, it is so overwhelming; so just remember – one day at a time.
This concludes the questions that you all asked. Thank you so much!
Now, as I said above, I am featuring some personal stories from other autism moms. There is a saying that if you meet one child with autism, you met one child with autism. This is so true. Although, they may have similar characteristics, every child with autism is very different. I thought hearing the autism journeys of other families would be helpful to understand autism.
Hi! my name is Lauren Petersen. I am a Mom to an amazing kiddo, Aiden, who has ASD. Aiden was diagnosed with ASD at 3 years old. Looking back, I had always known that something just did not seem ‘right’ when it came to his development. He met all his ‘marks’ at his visits, up until his 18-month well child visit. After his 18-month-old visit he suffered a seizure. His body shut down after spiking a fever of over 107.0 degrees. My husband, who is a firefighter, was on shift that day. I was home alone with Aiden and our 3.5-year-old daughter. We called 911 and, by the time the firefighters got there, the seizure happened and his body regulated his temp (praise God). From that day on, he just was not the same kiddo. He went into what we now know as, “Regressive Autism”. He stopped speaking; he stopped looking us in the eye. He would just lay on the floor and stare. Loud noises would trigger him into severe anxiety. He became aggressive and would hit and yell; echolalia was all the time. ‘Stemming’ and rigid behaviors began.
We asked our PCP for a referral for speech therapy. The speech therapist who performed the consult was, unfortunately, not trained in spotting ASD and misdiagnosed him with just a “speech delay”. The typical, “He is a boy and just learning slowly.” Well, as a ‘Mama Bear’, I refused to just accept what she was saying after almost a year. I sought out a referral from our PCP for a consult at Seattle Children’s Hospitals, Pediatric Behavioral Health. At that appointment, they called a “combative code” on us because he was so aggressive in the waiting room over the juice box not being ‘correct’. At that appointment, they gave us a referral to the Autism Center for a consult. They said the waitlist was one year long. I refused to wait, so I contacted a family friend who had worked at the Children’s Hospital, trying to see if she could get us in sooner. No go. I asked her if there was ANYTHING she could do. She then gave me the name of a friend of hers who worked at the Autism Center, but also had a private practice as Child Psychologist. She was able to get us in within one week for an evaluation, but insurance would not cover the visit and it was going to be $1,500. We made the appointment and Aiden received a diagnosis of Autism three weeks later. We were handed a packet of the assessment and recommended treatment plan. I remember sitting in the office, looking over the recommended therapies and said to her, “Wait, this is over 50 hours of therapies a week. I would have to quit my job in ordered to do this.” Her response was, “Yes, it is a lot of therapies.” That is all she said. Being professional, she of course could not tell a parent what to do or tell them to quit their job. But, she did not have to say anything else. I just knew. The look on her face said it all. I called my work that afternoon, quit my full-time job, and started calling every single therapist on the list and vetting all the clinics in the area.
Three months after Aiden’s diagnosis, he was in ABA therapy 5 days a week, Occupational Therapy, and Speech Therapy, and Developmental Preschool. We drove 200 miles a day, 5 days a week, 5 hours a day, traveling in the car to therapies. We did this for three years and honestly, it was one of the most difficult times in our lives. It was truly a dark time for our WHOLE family. Aiden worked SO hard for years and after those three years, he was talking, his eye contact was improving, aggressive behaviors were going down, etc.
In addition to traditional therapies, we left the standard western medicine world and tried numerous holistic treatments, which were amazingly successful for him. We learned that Aiden had severe levels of toxic metals in his blood. His gut was depleted of ALL good and bad bacteria. He had numerous food sensitivities. He had genetic ‘snips’ that made his body unable to detox and use B vitamins correctly, among many other issues. We were lucky enough to have a doctor that specialized in Special Needs individuals and helped us use a holistic approach to help healing Aiden. She is truly a miracle for him and our whole family.
Having a child on the Spectrum is one of the most challenging, yet one of the most rewarding experiences. I can honestly say that I would not have been able to say that just two years ago. It has taken a lot of mindset changes (on my part) to be able to see the gratefulness of this experience. Aiden is one the most kind and loving kiddos I have ever met. He absolutely lights up a room when he walks into it. He brings a smile to anyone’s face. He is the loudest person in the room, but he brings the most joy. I am so grateful to be his Mom! xoxo
It is important to all special needs families for others to learn about our children. The more you learn about autism, our life, our difficult times and the beautiful ones too, the more our children will be accepted.
If you would like more information or have additional questions about autism, please comment below. I would love to share more info with you. Please share my information if there is someone you know who can benefit.