This is my story, my perspective and is in no means meant to underscore your views or feelings during this difficult time. It is also not meant to garner pity as I have faith that my son will come out of all this stronger and more resilient than ever before. However, in a world inundated with endless COVID madness that tends to provoke fear and tell only one side of the story, I feel it is important to share what our son and family has experienced since March of 2020. As I write this, I am still raw from an incident we had on our local pier after over a month of forward progress. We had to call local authorities to help us get him back to our car after an extreme panic attack. It was traumatic for all involved. We are ok now and grateful for the first responders that helped us this morning.
It has been almost 2 years since the world stopped. My son was 14 and is now 16 and taller than his dad. He cannot speak, but we have always presumed competence and via a program called S2C (Spelling To Communicate), we know that even when he is out of control in his body he is aware of his behavior and it torments him when he has lost control. In fact, he often describes his communication limitations as a brain-body disconnect. You can learn more by listening to an interview with DM Gaivin of Transcending Apraxia in Season 1 Episode 35 (12/05/2019) and Season 2 Episode 11 with Julie Sando of Autistically Inclined (04/03/2020) and by checking out these websites:
Prior to March of 2020 he loved visiting amusement parks, trampoline parks and he used to love the beach and surfing with his dad and other non-profits. He has continually expressed his frustrations to me over the past 2 years and his pain and feelings of inadequacy and isolation break my heart. He lost his confidence in his ability to control himself in places that used to be successful and motivating. He would not get out of the car at the beach until recently. When amusement parks reopened, they were not following ADA laws here in CA and he couldn’t tolerate the mask. We just recently visited again after almost 2 years. Masks are now back here in CA until 01/15/2022. Many places are not enforcing but I must be mindful of any issues that may arise. I can no longer take him by myself as he is too strong for me if he loses control. I am not afraid to speak up and defend him but the time it takes to do this can result in major behaviors that ruin our attempts anyhow. Breaks from school are lonely for both of us now. Dad and siblings must work, and his grandparents are unable to handle these things anymore. Respite care is also a challenge due to his high needs and lack of staffing due to COVID. This is a true crisis in our community.
In March of 2020 my son was beginning to go through some major body changes and puberty was rearing its ugly head. It was, however, manageable and we had an amazing team that was there to support him. We had strong ABA team, a phenomenol school program, weekly S2C therapy, weekly specialized OT and speech therapy featuring PROMPT https://promptinstitute.com/page/Families_What_is_PROMPT and most of all we had confidence as parents to take him out into the community. Everyone was working with us to help him get past his obsessive ritualistic behavior, improve his communication skills, and support his motor planning and regulation challenges. This was all in person and for someone like him that really matters. His form of apraxia and the severity of his autism make zoom and other virtual therapies extremely challenging and mostly ineffective.
The first thing to fall was his ABA program. During the 15 days to slow the spread his supervisor was let go. She went above and beyond to support the therapists on his team. When therapy resumed in person his therapists struggled because they were no longer properly supported and had to deal with new supervisor after new supervisor. This rollercoaster ride resulted in major inconsistencies which manifested as anxiety and aggression. Our strongest therapist had to leave due to the needs of her own family and it was extremely difficult to find people who felt safe enough or motivated enough to work with us. After about a year of this we had one therapist left. He was so dedicated and kind. He tried so hard. We tried so hard. However, it was clear he was not properly supported by his supervisor and my son felt defeated. We could feel that they no longer wanted to support our son in the way he needed and we made the decision to stop therapy this past August. While we are on a long waitlist with a new ABA company, we are still without therapy as of today.
School was also online for months after the initial lockdown and despite a gallant effort from our son’s teacher and school staff it was not the same. He became even more isolated, frustrated, and lost all social connection outside of the home. During this period of time, he eloped out of our home multiple times. Our home is equipped with all the bells and whistles to prevent this and he still found a way. He is so fast and sneaky. The panic and fear I felt each time was intense. He had done this in the past, but we thought those days were over. We are lucky to have access to the Take Me Home Program here in San Diego County. https://www.sdsheriff.gov/community/take-me-home-registry. It allowed us to register him in a data base with crucial information that allows law enforcement to properly respond to him without force. Thank God as each time this happened law enforcement thanked us for all the detailed information we provided. They explained that the rate of elopement was sky high during the lockdowns and any little bit of information helped. He eventually went back and then school was shutdown again (Thanks CA). Every break since I must convince him school won’t be closed again. I do this to stay hopeful but who knows what the CA state government will do next.
In March of 2020, we were a two-parent working family with jobs that required us to be there in person. As his mom I was trying to be his everything, my families everything, a good employee and more. That just about broke me, broke us. Our whole family has multiple physical and mental scars to prove it. After the second school closure he has been able to go in person full time since August of 2021. I had to come to terms with how much he needed me, my own health struggles and made the heart wrenching decision to step away from my 20-year career in October of 2021. I’m finding a new path for myself, and I am confident in my decision. Like many, he has suffered major regressions during this time in his mental health and ability to learn and attend. One of the main reasons we chose this program was its focus on life-skills and community outings. COVID restrictions here in CA have greatly hindered this part of the program. Most of the students have regressed in their ability to navigate public settings after such a long break. Many of our kids need consistent practice to stay successful. His staff is committed to getting them all back into the community. It is not easy and one thing I have witnessed in the past two years is an overall lack of compassion for our kids. I’m not sure why, but I speculate it is because many are stuck in a state of fear or just struggling in their own way. School continues to be a source of unwavering support for him, and we are incredibly grateful. I worry that they may not be able to retain staff and be able to serve their students as turnover has been brutal this past year for all NPS school programs. It is a result of COVID related issues that never seem to end. His teacher is spread so thin, and we pray she will not burn out. We do all we can to show her and his staff how much we appreciate them.
S2C, his speech and OT therapies all went online in March of 2020. His S2C practitioner had to close for a while. When he went back in person, despite a ton of effort and adaptations to help him, he was not able to regain the confidence he had in himself before the lockdown. This manifested as manic reorganizing of the office for much of his session. No matter what was done he could not seem to get himself past this loop. We had to make the tough decision to take a break in August of 2021. He was aggressing towards himself, his practitioner and me. The self-injury was the worst thing to witness. This broke his heart and mine too. I continue to work with him at home but still don’t feel confident enough to take him back in person quite yet.
His private speech and OT were an overlapping session and in March of 2020 we had ABA support. He was beginning to make meaningful progress and I was devastated when this all went online after the lockdowns. Telehealth is wonderful for many things, but this was not one of them. I am not a trained SLP or OT and I was trying to navigate this with him by myself. Talk about stressful. Not only for me but most of all for him. I do not fault his therapists as they tried incredibly hard to help him during this time. In August of 2021 we stepped away. We still miss them. Therapy was all telehealth and because of his major regression I could not see us successfully navigating in-person sessions without ABA support.
His recipe for success includes all of the above plus a dedicated medical team. He also suffers from an immune system disorder which requires weekly IVIG, epilepsy (he has had 3 life threatening status epilepticus episodes since March of 2020) and many other specialists to address his complex needs. So yes, I read research obsessively, discuss treatments with his medical team, and dad and we make the best decisions we can with the information and resources we have. I feel it is important to mention that COVID restrictions left me alone in the hospital with him while he seized uncontrollably during his status episodes while his dad waited alone and scared in a parking lot. They also forced us to leave him alone in an ambulance as he was transported from our local hospital to our local children’s hospital. We were then left alone in their waiting room for over 2 hours after we almost lost him. I had to trust that he was being properly taken care of. He cannot speak and I am his voice. The minutes felt like hours. I know staff was doing the best they could with the resources they had, but as a mom it was chilling.
Masks, to me this has become the M word. I have even had fellow autism moms shame me for not trying hard enough to mask him. We have tried to get him to wear sunglasses, hats and more since he was a toddler. He still cannot tolerate those things. Believe me it was not lack of effort. While many have been understanding that he has special needs and cannot tolerate the mask some individuals have been flat out mean. I have been told: “keep him home if he can’t wear one”, “my son with autism can wear one you need to try harder”, “he will get us sick, keep him away”. These comments crushed him and his self-esteem. I have true empathy for them as they must be so afraid that they feel this kind of behavior is warranted. I also encourage them to read about ADA law and to remember that there are exemptions for a reason. I truly hope 2022 brings back compassion. I personally do not believe most masks are effective and have done my own research. I do not wish to argue back and forth on this subject. If someone feels safer in a mask and truly believes they work, I respect their position. Just be kind and listen to those who don’t blindly agree with you. You may learn something if you simply listen. Let’s get back to being kind.
2022 is almost here. I believe in my son and refuse to give up. As we approach this new year, I have some goals:
1) Continue to rebuild a supportive team for my son
2) Stay positive he needs me to
3) Get him back into stores, friends and family’s homes, and other community locations. He has not stepped foot into a store since March of 2020. (Yes, I cannot go to the bathroom when I am alone in the car with him. We cannot go to others homes this holiday season. This life is isolating. Try to put yourself in our shoes)
4) Heal the many physical and mental scars our whole family has endured in these past 2 years. Use them as a path towards growth.
5) Take care of myself. Do things that fill my bucket so I can continue to soldier on for him.
6) Listen to those who think differently than me about COVID. We can all learn from each other.
7) Be kind as we are all facing our own battles everyday
8) Take things one moment, hour or day at a time. Be present, appreciate my loved ones as they may not be here tomorrow.
9) Find time for my daughters and my spouse. They need me too. Special needs parents and siblings endure a lot
10) Celebrate everything I can. Positivity breeds more positivity
Life is all about perspective. Everyone has their own COVID story. This is mine.
By: Vanessa Surprise 12/22/2021
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