A Letter From LEARN’s President

Over the last 10 weeks, I know that most of us have experienced some level of fear, sadness, uncertainty, and hardship as the pandemic has swept across the country and changed almost every facet of American living. For many of us, these feelings have been compounded in recent days with sorrow, anger, and confusion as civil unrest has forced us to look hard at the inequities in American society. Especially to members of the Black community that we work with and serve, I send my personal support and empathy, and I want to be clear that we stand in support of the rights, safety and dignity of all people.

As an organization, it’s periods like these that force us to think deeply about our role in creating a brighter future in the communities we serve. Inherent in our mission is the idea that we exist to help children succeed. But now more than ever, it’s important to take stock of who we help and how we do it. I believe strongly that:

  • Our mission is to deliver as much hope as we can, to as many families as we can, equally and fairly within all the communities we serve.
  • We have a duty to serve all families with compassion, respect and understanding of their circumstances.
  • While society as a whole may not be a level playing field, we must do better to create a workplace that is inviting, and model inclusion and diversity.

So what’s next?

  1. We will be re-evaluating how we train and support the clinical competency of our clinical and administrative team to ensure that our services are compassionate for all
  2. We will be tasking our Diversity & Inclusion Committee with generating new ideas on how we can better promote a diverse and inclusive workplace
  3. We will continue to proactively seek to expand our services to underserved communities in need

Every step forward counts, and if we can make small progress every day towards our ideals, we can deliver results that will continue to make us proud to work for LEARN as we do our part to contribute to a brighter future for all.

#togetherwecan

-Justin

Keeping Kids Connected to Loved Ones Via Zoom and FaceTime

As some states cautiously move into the initial phases of re-opening, there may be more places to go within your community, and more opportunities to see people you haven’t been with for some time.  Even so, it’s likely there are people in your child’s life that you are still unable to see, whether it is because they are higher-risk individuals who are self-isolating or because travel between states has not yet fully resumed.  We are moving in to our fourth month of diminished contact with our loved ones, and as ever, looking for ways to keep up connections with those who are in our hearts, even when they can’t be in our homes.

Our children, too, have felt the isolation.  We want to make sure that our children continue to maintain important relationships with family members and friends they’re not able to see in person.  When your child has autism, this can be even more of a challenge.  As we continue down this road of reduced in-person contact, it’s important to help our children preserve their ties with others.  Video conferencing, such as Zoom or Skype, can be one way to keep these bonds strong.

Maintaining a wide network of support for our children within our communities is another reason to stay connected.  Even if relating to others is difficult or connecting via video conferencing isn’t particularly meaningful for your child, it can serve to keep your child at the forefront of the thoughts of others.  Helping your child’s community to keep them in mind, make regular contact, and show their love and support can have long-term benefits on both sides of the relationship.

Here are some tips to help make video-conferencing with family members a little more successful:

Expectations

To reduce stress on yourself as the mediator, shortly before the call, take a minute to remind yourself that the most important goal is for the two parties to quickly connect and know they still care.  Let go of any expectations that there will be a sustained interaction.

Prepare for a zoom session just long enough to allow everyone to say hello, and have a brief connection; too long of a session may put stress on you, your child, or the person on the other end.  Unless your child is an avid zoomer and the person on the other end is dying for a long session, you will want to plan for a fairly short call.  Really, just a few minutes on a regular basis is enough to spark recognition and rekindle the sense of connection that your child has with this person.

Your child may be at the point where they don’t yet have a spark of connection with very many people, and that’s ok.  It’s still important to maintain familiarity.  Remember that setting up short but frequent interactions with other people in your community can also strengthen the rapport that the other person feels for your child, which may boost opportunities for further social interaction in the future.

Preparation

To improve the chances of a smooth experience, you may want to prepare your child, and perhaps prepare the other party.

Choose one or two things to talk or items to show the person.   Children can present a favorite toy, or art project that they have done.  If your child is verbal, you might review something they’ve done recently that they can share, practice a song they can sing, or prepare them to tell a favorite joke.  If there is a new skill that your child has that s/he is particularly proud of, this is a great time to show off.  If your child may be tough to engage via video, you might consider showing the other person an interaction between you and your child, for instance, a game you play together, or something you do that boosts your child’s mood.

Some of the people you may be connecting your child with already know them well and will have excellent ideas about how to engage.  Others, especially older relatives, might not be familiar or comfortable with video conferencing, and may have difficulty coming up with ideas, so it can also be useful to prepare them.

Think about things that will be most likely to catch your child’s attention.  If your child likes music, for instance, zoom friends can sing them a song, play an instrument for them, or play a song that they could listen to together.  If your child is interested in electronics or visual stimuli, the zoom partner could use a custom background that might be particularly interesting to your kiddo, share their screen to look at photos together, or use effects on the screen to share stickers and drawings.  For children who are more verbal, you might prepare their zoom partner to tell them a joke or a story, or give them a softball question to ask your child about something they will be excited to share.  If your child likes books, reading a story is another great option.

The Call

During the call, let go of the expectations that your preparation will go exactly as planned, and return your focus to the underlying goal:  a short hello to maintain a link to an important person.  Remember that it doesn’t have to be a long, chatty affair, it can be a 5-min operation start to finish.  Give it your best effort to help your child attend, but don’t put pressure on them to sustain the interaction longer than they are interested.  Go in with an attitude of flexibility – do what works, let go of what doesn’t.

Keep in mind that each conversation is just one small interaction that continues to build upon their history of rapport. Short, frequent contacts with others can help your child continue to recognize and identify those they are not seeing frequently, and can support the ongoing relationship.  Put in the preparation and keep the interaction short and sweet.  And of course, if you don’t feel successful the first time around, remember that practice makes progress, and keep on going.

To All the Other Parents of Children With Special Needs: I Feel You

This was a text from one of my mom-friends in the early days of our stay-at-home order.  It took me a second to register the meaning in this statement from someone who is my friend, my peer, who has children of the same age.  It felt so foreign, and I immediately thought, Time?!  What am I doing wrong?  (The answer is, of course, plenty, but let’s not get distracted here.)

The difference between my lovely (bored) friend and myself is that I am parenting a child with special needs.  I don’t have a child with autism; my oldest struggles with mental illness.  In regular times, it’s lonely, it’s difficult, and I feel like our family is indelibly different.  But in the midst of a pandemic…  Forget different, we are alien life forms on a different planet.  I get texts from my friends asking for validation that it is okay that they let their child skip an assignment today.   My first thought is, Girl, today I turned on closed captioning while the kids watched tv and I called it Reading All Day.  Facebook is full of pictures of the cleaned-out basements and fresh-baked sourdough done in my friends’ free time.  Again: Free time?!?  Like some of my friends who have kids with autism, my days are spent helping my child manage the basics of life: getting over the emotional hurdle of breakfast, running the marathon of 2 hours of home-schooling that feels like 12, spending an hour out of every three diffusing a meltdown.  Throughout it all, my husband and I are following a path that winds around the house like a trail of breadcrumbs, wiping and fixing the things that have been spilled and broken in his wake.  It is constant.  It is relentless.  There is no lunch break.  There is definitely no time to be cleaning out my basement.

I want to take a moment to share my awe of all single parents. The only reason I am able to still function at work is because of my husband’s support and participation.  (Seriously, single parents, I salute you and offer up all the hugs, kudos, props, and every other form of recognition.  If you are a single parent caring for a child with special needs during this pandemic, with all of the powers vested in me by the Mommy-Blogger-Gods, I decree that in your next life, you deserve to be lounging on a shady terrace in a tropical climate, being slowly fanned, while you sip a fruity drink with flowers in it.)  I do have a partner, so yes, there are moments when I can take a walk by myself, or shut myself in my room for a half hour.  But even this privilege feels trivial under the constant barrage of the immediate needs of my child.

So here’s what I want to say to my peeps out there, the parents who are following similar bread-crumb trails of disaster around their houses:

You know your kid. 

Some of us have chosen to have service providers in our homes, accepting the risks; some of us have moved to telehealth, but with fewer hours; some of us have had to discontinue services, for one or more of a million reasons.  These decisions impact our child and our families now, and in one way or another, their future.  More than ever before, we are in our heads, second-guessing the decisions we are making about our children’s services, or about how we are handling their days (too much routine, not enough routine).  Even the opinions of well-meaning friends and relatives who are not trying to be judgmental can seep in and sow seeds of doubt.  Here is a mantra to repeat to yourself: I know my kid better than anyone.  You are the only one in a position to know what is best for your child.  It’s important to listen to the opinions of some (professionals who know your child, for instance) and to absolutely ignore others (your nosey neighbor who’s “just seeing if everything is okay” when your kid is raging over, literally, spilled milk).  Remind yourself frequently that you are the expert on your kid; not only that, you’re also the one directly managing the day-to-day every day.  Whatever decision you have made, I applaud you.

You are doing great, and I am not judging you.

Thou shalt not judge oneself by thy neighbor’s Instagram.  For reals.  Reading heartwarming stories about all of your friends’ kids’ accomplishments and seeing portrait-mode-perfect pictures of their happy faces while doing a distance-learning science project can stop my heart for a moment.  This stuff is hard for me in normal times; somehow this pain has been heightened by the pandemic.  If you can find it within you to see these things and be happy for your friends and also still feel good about your own family: you are a special angel and I want you in my life.  For the rest of us: turn off the Instagram and the Facebook and find communities of parents who understand your story and can celebrate the unique joys of your kiddo with you.  I could never tell my typical-mom friends about how thrilled I am to go two days in a row without a hole knocked in the wall, but I have found other moms who have similar circumstances and can help me rejoice in this little bit of progress, which reminds me that I am doing great.  You are doing your best AND your best is enough.  Recognize this and seek out others who will also appreciate your kiddo, your circumstances, and your efforts. Repeat to yourself, you’re doing a great job.

 

Ask for Help. 

I know, it’s harder than ever to get help.  Babysitters may be less available, or you may have less money to pay them.  Home therapists and respite workers were hard to find before the pandemic, and now it’s…well, let’s just not even go there.  Here are some ways to ask for help if you are drowning:

  1. If you do have a partner, I highly recommend locking yourself in your room once a day and tuning the world out, with headphones, a book, television, or a nap. Nobody can keep going without a break.
  2. If your child is able to FaceTime independently, reach out to friends and family members and schedule a FaceTime session every day, whereby you can get a small break. (Hooray!  Congrats!  You get to go to the bathroom alone!  Oh, unless you have multiple kids.)
  3. If you have an ABA therapist, keep them updated on how things are going. Don’t hesitate to communicate when something new has arisen or gotten worse – they are there to help you.  If you need more hours, ask for it.
  4. If you don’t have ABA services right now, reach out to see if telehealth is available to you, even if it’s just parent education.
  5. If your state has a crisis intervention hotline, put the number in your phone so you have it handy if you need it.
  6. Exhausted parents don’t love to cook dinner….if you can afford it, order take-out. If you have a friend that offers to help, ask for a dinner drop-off.  If you have cereal and toast for dinner every night for a week, I feel you, friend.
  7. If you need a group of people who get you, turn to Reddit, or FB groups, or another online forum of parents who share your situation. Lurk for awhile, or jump right in.  Hearing someone else tell a story that could be yours honestly lightens the load for a minute.
  8. If you are associated with a church, temple, or other community organization, reach out to see what services they are offering their members. I have heard of organizations providing meals, support phone calls, grocery drop-off, and other help.
  9. Everyone should know about Aunt Bertha – it’s a network linking up non-profits and social programs with people who need them. If you need help with paying for groceries, healthcare, housing, utilities, or help finding a job or getting legal aid, Aunt Bertha’s got you.  https://www.auntbertha.com/
  10. The National Domestic Violence Hotline is available 24/7 and is free and confidential. I hope you don’t need it, but if you do, please don’t hesitate to call: 1-800-799-SAFE (7233).
  11. The Disaster Distress helpline is set up to help people experiencing a crisis, such as this pandemic. Call 1-800-985-5990 or text TalkWithUs to 66746.
  12. If you don’t already have a counselor and you feel you need one, ask your PCP for a referral.
  13. Check to see if your employer has an Employee Assistance Program. They may offer free counseling, legal advice, or other services.
  14. If you are in fear for your own safety or the safety of others, please call 911.

Take care of yourself, by any means possible. 

Caregiver Burnout is real, y’all.  I had a dark day last week – I was exhausted by a few really tumultuous days in a row, with no sleep.  Someone mentioned “self care” to me and I made a gesture.  For the sake of decorum, let’s say I rolled my eyes.  I would have loved to have taken a bubble bath, gone to get a mani-pedi, spend an hour in yogic meditation, had lunch by myself while I read a book, and all of the other things that come to mind when I hear the words “self-care.”  It goes without saying that none of these things are an option at the moment, and not just because my mani-pedi place is closed.  But here’s the thing: we still have to take care of ourselves.  The best way that I’ve found to “care for myself” at this point in time is to simply lower the bar.  Your bar is already low, you say?  Maybe you need some more encouragement.

It is okay to decide not to change from your sleeping sweatpants to your daytime sweatpants.

It is okay to not respond to texts for several weeks and then to forget to show up to a zoom social hour with your friends.  It happened, don’t sweat it.  They’ll live.

It is okay to change the screen-time rule to only-when-they’re-awake.

It is okay to let your child wear their favorite dirty shirt 14 days in a row if you are picking your battles and that’s not one you feel like waging.

It is okay to lock yourself in the bathroom with your headphone and pretend you are having digestive issues when you are really watching SNL at Home skits, because dammit you need to laugh!

Get the picture?  You need to rest, Fam.

 

You know what The Plague, the Spanish Flu of 1918, and the Hong Kong Flu Pandemic of 1968 all have in common?  They ended, eventually.  Like everything else in life, this pandemic is temporary.  Hold on to that.  Remind yourself that the reason it feels so hard is that we have been doing this for so long – which means we are that much closer to it being over.  Above everything else, while we continue to take this slog one day at a time, be kind to yourself.  Give yourself the kind of encouragement and compassion that you would give me, if we were friends….And I promise that I’ll do the same.