Think of how stressed we are that our daily routines have been completely changed from one day to the next, some of us have lost our jobs, if we have jobs, many are working from home. If you are an essential worker, childcare has to be planned for and the fear of bringing home this Virus is a real concern. Some have gotten sick or have had a family member effected by Covid 19. Our social outlets such as dinner with family or friends or just going to the gym has just stopped, everything is closed, travel plans have been cancelled, birthdays and graduations cannot be celebrated in traditional ways. Visiting with our parents or family members can be dangerous, and now our wardrobe has some additions such as a mask which also serves as a daily reminder of this pandemic fear. Think of how all this makes us feel? Our children have also had to make massive day to to day changes.... no school, no sports, no social gatherings..... just stuck at home.
Now think of a child with a Disability that is unable to truly comprehend what the heck just happened. Due to language deficits, they are not understanding why the bus is not arriving in the mornings, why they are now seeing their teachers, classmates and therapists on the computer, why they are home with their families and no one is visiting, why they are not going to therapy or their extra curricular activities. For many families, there was a focus on decreasing screen time and increasing inclusion and now we went back to increasing screen time (we have no choice) and stopping all social opportunities. We just abruptly stopped life! This is a very confusing time for them. Think of how we feel, now try to put that same perspective into the way they may see this.... does it make sense now why they have had such difficulty adjusting? We did, so why would it be different for them?
By now, a few months in we would think that they have settled and accepted the “new norm” but not all have. We have had to go back to some old tricks such as schedules, timers, things we had probably learned with the onset of the diagnosis is now be practiced again and hopefully it has helped. But for others that may not be the case, it’s like we are stuck in a bad dream. As things are now starting to open, parents are scared. They are just not ready to jump back in. This is now causing more stress and anxiety on parents and our children are feeling our fears. In my opinion it’s like round 2! Siblings are feeling the stressors as well so the entire family is struggling. It’s a constant tug of war right? Relationships are being tested and everyone is feeling uncertain about the future and what that may look like. Everyone has feelings and all individuals despite their ability levels can pick up on stress and anxiety.
We have to figure out how to best integrate again into this world. Some families now have fears that if all establishments require masks, their child will not be able to be a part of anything because their child will not wear masks and unfortunately that can impact the entire family. Some have fears that it’s too soon and they are too nervous to even consider taking their family out. Others are ready to drop the kids off at camp or school. I want to stress here that no one is right or wrong and NO ONE should judge. We cannot ever fully understand how all this can look in one’s home, there are too many factors to consider and we have to be respectful of that. Some children and adults have regressed tremendously and they need their routines to get back on the path they were on. Some parents have no choice and have to return to work. We have to be mindful of all this and be supportive to all. No parent should ever feel like they are making a bad decision, we are all doing the best we can. This is truly a balancing act and we need to do what we need to do for our families!
This time home I will say I have learned a lot about my children. Of course I know my children but to spend all this time with them, sitting together for dinner every night, listening to their conversations with their friends, watching TV with them, it’s honestly been really nice at times..... like a reset. As your children get older you loose sight of a lot of this. It’s normal, most 17 year olds don’t want to hang out much with their parents.
For my family, as challenging as it’s been for Chandler, our 20 year old son with ASD, it truly has put so much in perspective for us in planning for his future. Pre-Pandemic, we were so busy with life, the everyday hustle, running from appointment to appointment, multi-tasking to be able to get through the day, 2 minute conversations with family members, it’s like we were just living minute by minute. Our routines were so busy that we thought all was going great. Being home I am able to see more clearly Chandler’s strengths and weaknesses. We have had to set new long term goals of what we need to target for more independent living for our son, and help create our future plan along for him and us. Life has a way of throwing curve balls but plans are so important to ensure our children are going to be okay. It’s honestly been an eye opening experience, some positive and for sure some negatives but it is what it is! Our cards have been dealt and we need to now play the hand the best we can.
There are several moments in the day where I want to pull my hair out. All this is just so much to handle and unless you live it, you have NO idea what it’s like. I am running a business from home while caring for my adult son with Autism. My husband is an essential worker so many days I am solo as my 17 year old has to attend to his studies and rigor of his junior year. I have turned to my village for support, my family and friends. I have attended some Zoom support groups and actually hosted several and will say this has been very helpful. This is okay and “human” to feel overwhelmed. When I need a break, I have finally learned to take it. I will sit outside at times by myself and just zone out for 15min as an escape. I will put my sneakers on and run 4-5 miles to clear my brain. I will pour a glass of wine and watch a comedy or a silly reality show. Parents have to find their “place”, their escape and take it when needed.
Given the current story of a 9 year old child with Autism that passed away and his mother is being charged with his murder in Miami Florida, I have dug deep to think of how that family could have been helped to save this child. I have thought so much as this story has truly touched so many and has made me think of what our families need. Our families need support! Our families need a break! Our families truly need that village to help them cope with the day to day reality of raising a child with a disability. I love to see these support groups but parents are so exhausted and for many it’s hard to get on the computer while caring for their families at home. Parents need help, a mental break and there is NOTHING wrong with this.
Here are some suggestions, of course if you have safety concerns due to Covid 19, speak to your Doctors:
-Once you are comfortable with allowing people in your homes or dropping your children off to a family member or respite provider, I encourage to do so.
-Taking turns with family members is also helpful in getting some much needed breaks. My husband and I will take turns and I will ask my son (17 years old) to go swim with his brother or watch him so I can go take some “me time”. That can even mean sitting in my room and closing my eyes for 30min while listening to calming music. If you do not have others at home, time to ask the grandparents, aunts and uncles, nephews and nieces, etc..
-Asking your friends for help. I realize that not all may have a supportive family but this is when we need to ask our friends. We cannot feel bad or embarrassed to ask them. Our mental health has to be the top priority right now. Even if it’s only for an hour. Please ask!
-Asking other special needs parents. I have met some extraordinary parents in my journey and of course they understand our lives. Maybe setting up times to help one another, or even just to have coffee talk. We need to support one another
-Social Media. Take a break if you can. If it causes additional stress, choose another outlet. If others posts, opinions and advice can cause you to get upset or create unnecessary anxiety, just stay away from it. You need to recognize this and turn it off.
-Self care........ so important! I have tried new facial products, given myself manicures and pedicures, focus on you! Get dressed everyday, put on makeup if it makes you feel great! If I stay in PJ’s all day, I feel unproductive and lazy and I do not feel I handle the day the best I can. I feel the more put together I look, I can conquer the day more successfully. Not going to lie... I went and had my nails and hair done last week and it made me feel like a queen!
We really need to focus on us, our children will be fine and I realize it’s hard to see that but we will reflect back on these difficult days and ask ourselves, how did we get through that? We need to recognize when we need to ask for help and you need to take it. If you see community members offering to help, they want to hear from you. If the times that they offer support groups do not work for you, reach out to them and ask them to just talk to you. I personally will drop whatever I am doing to listen to you and I know everyone else will too. I am not a counselor but I am a good listener and will help you get through it as a friend.
I wish I can hug you all, we need those hugs but for now I leave you with this. I am so proud of each and everyone of you who are reading this. Some days are going to suck and others are going to be great! Have to keep that in mind. If you need a minute to regroup, take that minute while ensuring your child is safe. Phone a friend if needed and take up family, friends, and professionals offers to help. We are all in this together especially this community! We advocate and support one another and we are blessed to have that so take advantage of whatever you and your family need!
Stay healthy and know that I am a call, text, or email away!