Back to School: Virtually

At about 2:45 today I was standing in the kitchen and I suddenly realized “Oh my gosh. I still have to make dinner for my family.” I had plenty of time of course before dinner, but it just hit me, and it was oddly overwhelming. I was already so tired I could barely stand. I looked to the left and saw Iris outside playing with sand (which was everywhere by the way) and I looked to the right and saw my laptop open on the kitchen table, with a stack of papers next to it, outlining my next work task.  I looked forward and saw an extremely messy family room and a dirty table. I looked down at my wrist and figured I must have done at least 15,000 steps today.  My movement had to match my level of fatigue.  But the Fitbit flashed back. 4,300.  Ummmmm…

How the actual heck could I be so tired when I’ve (according to my watch) barely moved today?  Well, I’ll tell you how. School started today.  And instead of dropping the kids off and coming home and laying on the couch not moving for a half hour to try to begin the recovery from summer break and constant entertaining, cleaning, cooking, etc… we branded our living room with the name of a pretend school, adopted a family mascot (the masked sloth), and started on our journey for a year of virtual learning.   Today we went to school to pick up devices and met teachers through the windows wearing masks, dealt with technology issues, attended zoom meetings and my daughter also had two ABA telehealth sessions, one before school started and one after it ended.  I even touched my very first Chrome Book, which was a big moment for me because if we are really being honest, I didn’t even really know what a Chrome Book was before all of this started. 

I wouldn’t say that I’m tired from “Zoom Fatigue,” or even from supporting my kids through virtual learning.  It’s different than that.  It’s a tired that comes from the weight of what is going on in the world, and starting school, at home, was a powerful reminder of this. It’s a tired that hits the core of a parent as we worry not only if we are going to be successful with instructing our kids, but also if we can make this experience good enough for them that they won’t come out emotionally scarred on the other end.  It’s the tired that comes from hearing your child yell, “I want to go to REGULAR school with a REGULAR teacher!” and not having an answer for them when they ask when they can go back. I feel the weight of not knowing if I can be a special education teacher, speech therapist, physical therapist, occupational therapist and adapted PE teacher for my younger daughter, while still supporting my older daughter, being a good wife, friend, daughter and sister, getting work done for my own job, keeping the house clean, and … wait for it…. remembering that these little people running around my house need to be fed on a regular basis.  I know these are weights we are all feeling right now. It’s virtually impossible to not feel like this. Virtually Impossible. See what I did there?  Even my impossibilities have gone virtual. 

Its 10:30 and my day is coming to a close. I still have things I would like to get done, but I’m closing up shop because I’m so tired I can barely move. My watch still only says 7,181 steps, but I feel like I ran an emotional marathon today.  There were tears, there was yelling, there was laughter, there were treats and hugs and I felt so proud of my kids for being brave and trying to see the positive side. I felt in awe of the teachers on the other side of those screens, doing all the can to make this special for our kids. And, I feel insanely in awe of my friends who are working full time, some of them teaching their own classes, while also supporting their children. If you think about it, it’s really incredible what people are doing. This year isn’t starting out the way any of us wanted it to, but you better believe that we are going to give it our best shot. Go Sloths!

Six Feet Apart

“Mom, they aren’t standing six feet apart.”

I look up from making dinner and on the TV, Justin Timberlake is playing guitar in a music video, next to another guy and they are standing close together and singing.  It was an old video, but my daughter only saw a rule of the present time being broken and she was confused.  In that moment, as simple as it seemed, I was hit by the enormity of what we are doing right now in our lives. Trying to explain something that is extremely abstract and hard to understand to someone who sees the world completely in black and white.  Explaining the quarantine and the dangers of corona virus to children who thrive on routine, predictability and stability. None of which we have right now. And we are trying to do this in a way that helps them understand the severity of the situation, while not making them feel terrified of the risks that float around us. This is a task that I’m not sure I’m currently being successful with.  And, to be honest, if I had the chance to be near Justin Timberlake, I’m not sure I would be able to stay six feet apart, so maybe following the rules isn’t so easy for me either.

For 9 years, we have tried to teach our daughter to engage in appropriate social behaviors.  As she has gotten older, we have taught her to be “appropriately close” to others (not too far away, not too close) during interactions, to shake hands when meeting someone, how to determine who is ok and not ok to hug (“we know you really like the pizza delivery boy, but you shouldn’t touch him”), to use manners and be polite and ultimately that social interaction in general is safe, and literally makes life what it is.  We have had to repeat these rules over and over again, and practice them in contrived settings in therapy and in real life. We have rewarded her for playing with other children. And now, for the past five months, we have reneged on these rules, changed them and she doesn’t get it.  She no longer has people who are “safe to hug” outside of our home, is not allowed to touch the hands of others, doesn’t get to have playdates and we are teaching her that social interaction right now is potentially dangerous as we are isolating ourselves at home.  And, we no longer have access to other people for her to practice these skills on a regular basis.  My heart broke when she recently saw a friend at the beach and I had to tell her “you can play, but don’t hug him.”  I highly doubt her friend was a risk, but our kids also have a really hard time understanding exceptions to rules, so we have to be strict with her in order to ensure safety.  If we let her hug the friend, she will assume that it is now safe to hug everyone and since hugging people is pretty much her favorite past time, aside from stealing desserts when no one is looking, this could get out of control pretty quickly! 

If we as parents are having a hard time understanding this right now, and kids in general are having a really hard time understanding this right now, then kids with autism and other special needs are REALLY, REALLY having a hard time understanding this.  However confused we feel, our kids are feeling that exponentially more.  My older daughter is sad that the schools are going to be closed for in-person learning, but she generally understands, my younger daughter throws a screaming tantrum every time someone mentions virtual school.  My older daughter understands the dangers of the virus and why virtual school will be helpful to keeping more people safe, my younger daughter sees only that her world is falling apart.  She can recite the rules (“they aren’t standing six feet apart”) but that doesn’t mean she can control herself enough to follow them and she doesn’t understand why the rules are really in place. This isn’t to say that my older daughter isn’t miserable given the current situation, she is, but it is just a little easier to explain the situation to her.  I’m also not insanely worried for her that we are undoing literally years of therapy that has focused on developing positive social skills by continuing to quarantine for an unspecified amount of time.  When this is over, I imagine our older daughter’s skills will jump back fairly readily (or at least I can hope for this), but I’m pretty positive this won’t be the case for our little.

In the upcoming months, my hope is that we can provide rules for them that will help keep them safe, without causing unnecessary fear.  I hope that we can provide a virtual learning environment for our daughters that fosters enough socialization to help them hold on to the skills that we have taught, while not putting them at risk. I hope that we can provide some level of certainty, when there is little certainty to be found within much of our lives at this time.  I am focused on providing meaningful routines and controlling the things we can control, so we can get through this in the best way possible.  I’m worried that we will be too tired to do all of these things, but I certainly am going to try, and I know that many of you are out there doing the same and I see you.  We can do this. We will do this.

And someday it will be over, and we can all stop standing six feet apart.

For ideas on how to provide stability for kids during uncertain times, head over to the teaching tips link or follow the link here: Tips for Managing Uncertainty

Put Your Mask on First

After the emergency spiel, the flight attendant gently puts her hand on my shoulder and says, “Ma’am make sure if the masks come down, put yours on first and then help the little ones.” I smile and nod and say “ok” all the while thinking to myself “if those masks come down, there is no chance I am going to be doing that.”  To me, the concept of “put your mask on first” is really hard. I don’t know how we are supposed to feel happy or good about taking care of our needs before those of the people around us who can’t fully care for themselves. But, at the same time, I also understand that if we can’t breathe from lack of oxygen on a plane and pass out before we get the mask on the kids, everyone will suffer.

Airplane rides aside, how to do we tackle this as parents? What is the balance between taking care of ourselves and taking care of our kids (or our elders as many parents of young kids are also experiencing)?  And, how does whatever the answer is translate during a global pandemic when access to support and resources are limited? AND, how is this different for parents of children with extra needs? These are the million-dollar questions.

Given our current situation, I imagine most parents aren’t really indulging in many extra treats for themselves. I think most of us are just trying to get by.  I read a story recently about how we are going through a second wave of dealing with this pandemic due to the gradual reopening of things paired with a new fear of re-entry into the world. We got used to being at home, and now we have to get used to going back out into the world. A world that honestly, isn’t any more safe than it was three months ago.  How can we even think about taking care of OURSELVES when we are busier than ever taking care of our families?  Making decisions that affect everyone’s health and safety? Trying to figure out what the heck we are going to do to fill our summer days when we can’t really go anywhere? Will the kids go back to school in the fall? And honestly, who is going to hold your baby while you put on your mask anyway because your babysitter STILL isn’t allowed in the house??

 I’ve wanted to write this post for a while, but the truth is that I actually don’t know how to write about this topic because I’m the WORST at self-care. I hate exercising, the guilt of taking time to myself outweighs the joy I get from being alone and every time I try to take a break, I feel like a catastrophe strikes that needs my attention NOW, the break ultimately gets interrupted and it seems silly to try again. I try to do yoga, my dog sits on my face, I sit down to check my email, someone spills a drink, I try to make a work call mid-day, the dog pukes all over the carpet, someone’s hair needs to be brushed, someone’s shoes need to be found, you know the story because I imagine your own version of this happens at your own house.  But I want to write about it because I know that I really do NEED TO LEARN how to take better care of myself because I have been in the position where I am so unbelievably tired that I feel like a walking zombie. And as we look toward the possibility of another YEAR of homeschooling while trying to balance working and not allowing babysitters or other helpers in our home I figure I better figure something out pretty quickly. Nobody really wants a zombie for a mom or a dad, at least I don’t think my kids do and I’m fairly certain that zombies don’t make successful homeschoolers.

 The thing about a self-care routine is that it gets tricky when you have a child (or multiple children) who requires a higher level of attention than a typical child (and we all know that even “typically developing” children still need a lot of attention!).  Most parents of young kids don’t get alot of time for themselves and accept the fact that their hands will be full for a few years, and find a way to power through, because the days of increased independence are coming.  As kids get older, they tend to get easier, childcare and playdate options widen (sometimes you even get to drop your kid off at SOMEONE ELSE’S HOUSE FOR A FEW HOURS!!!!) and parents can squeeze in a little “me time” while the kids do their own thing.  But, parents of kids with special needs know that the days of increased independence might not actually be coming and honestly know that if anything, it is probably going to get harder as the years go by.   They will get bigger and we will get older. We aren’t dropping our kids off at other people’s houses to play, we aren’t leaving our kids for the weekend with someone so we can get a night with our spouses or to ourselves. Realistically, we aren’t even sending our kids to the bathroom alone because they still need help (and we might even be bringing them along to the bathroom with us because frankly, it isn’t safe to leave them unattended for even a few quick minutes).  Every waking minute of our days is spent making sure that someone else is safe. And right now, we are doing that within the supports found only in our own homes, without school staff, therapists and respite care workers that help us so much during regular times.  The reality is that we have to be WAY more creative when it comes to finding ways to take a break. And sometimes, it feels like more trouble than it’s worth. 

But, we have to find a way.

The other night, it was coming up on bedtime and my eleven-year-old said, “Do you want to read to me mommy?” And I did want to read to her, but my eyes were so tired that I honestly didn’t know if I could. She must have seen the look on my face because she quickly said, “I’ll read to you and you can lay in my bed.” So, I laid down in her bed and she left the room and came back with one of my cloth face masks.  She told me I could put it over my eyes so it would feel darker and I could fall asleep while she read.  The mask. She brought me the mask. I put it over my eyes and closed them while she read. And guess what? I felt better when she was done reading. 

Find your mask. Put it on.  And, if you can’t find your mask, ask someone to help you look for it.  Maybe your “mask” is letting your kids watch an extra show while you read a book for ten minutes (and while we are on this, can we all please just agree to stop feeling guilty about allowing extra screen time right now??). Maybe its cooking your favorite recipe for dinner even though you know the kids don’t like it and serving them cereal instead of listening to them complain, or planning a quiet date night with your spouse after the kids go to bed, or letting the laundry pile up and giving yourself permission to not care for a couple days, or taking a minute to call a friend. Masks look different for everyone, just try to do whatever you can to make yourself feel like you’re getting some kind of a break. Putting your own mask on doesn’t mean you aren’t going to put on your child’s, or your husband’s or your wife’s or your dad’s.  It means that you are more likely to have the strength to put on someone else’s mask on when they need it.   And they will need it. And you will be the one to do it, because your mask will be on and you will be able to breathe.  And the one who can breathe is the one who can take care of others. 

And also, since we are on the topic, wear your actual mask when you go out in public. It’s the right thing to do.

The Phase we are In

When it comes to parenting, a lot of times we learn about the hard stuff by watching other people go through it first. We observe our friend with older kids, or listen to stories passed down from older parents. And sometimes, that one friend, you know, the one who usually goes a little too far but you still appreciate her, will forewarn you randomly about all the shit that is to come.  And that can all be pretty helpful, because as a group, I think we generally like to be prepared. But no one, NO ONE, not even that one friend who has lived through a million crazy scenarios, ever forewarned you that at some point in your parenting journey, you might find yourself quarantined to your home with any number of small children for an unspecified amount of time, while a crazy rampant virus is threatening the lives of millions of humans right outside your door.  We are actively living this and I still can’t even believe that I just wrote that sentence.

My favorite singer, John Craigie, has this beautiful and sweet song called “What Phase is This?” and it’s about all the phases we go through in life and how he wonders, “how long will I get to keep this phase?” These days I find myself thinking “What Phase is This?” and asking myself “how long do I HAVE to keep this phase?” This isn’t teething, this isn’t the terrible twos, this isn’t the transition of buying a new house and moving or starting a new school or a new job, taking care of a child who is sick with a cold, or saying goodbye to a babysitter that you love when she moves away.  This isn’t any of the hard things that parents have done for years and years that we have watched them do, and watched them get through and that we know have a timeline.  This is new. This is a phase that no one alive right now has ever lived through.  We don’t know the timeline, and we don’t know how long it’s going to progress or how long it will last.

All I can say during this time is be kind to yourself. Be kind to your family and be thankful for anything you have that you can give thanks for. This is hard. It’s something that we don’t know how to do as a human race, but we are learning.  If you are trying to make the best of the situation, that is enough.  If you need to take a break and walk away from your kids, take a break and walk away from your kids. If you want to go in the bathroom and cry, do it. It’s fine and its totally ok because this is a new phase and we are all just doing the best we can to learn how to live through it. 

So for me, today, as I ask myself, “What Phase is This?” I wonder what I will tell myself when this phase is over. When I look back, maybe I’m going to tell myself that this is the phase where I learned that my family should always come before work, the phase where I learned that if we put our minds to it, we really can sit down as a whole family every single night of the week and eat dinner together, the phase where I learned that though my kids fight sometimes, they really do love each other and their relationship is so special and unique, the phase where I realized that we really should keep on top of grooming our giant dogs regularly because we had been putting it off and now our house is full of hair and I feel like all I do is vacuum, the phase where I really and truly learned how to prepare for larger scale disasters, the phase where I learned how to sew face masks, and how to wash groceries when they came through the door, the phase where I learned that we can do hard things. We can do the hardest things. We will get through this. This phase will end at some point and I have a feeling that things from here on out are going to be different because of it, but maybe they will be even better than we imagined because we got through this phase. 

So, for you, what phase is this?  What do you hope to see when you look back on this phase once it ends?  

Listen to the Song Here: “What Phase is This?” By John Craigie

Learning the 9s

Anytime in my life that I’ve been asked if I’m a “glass half full,” or “glass half empty” kind of person, I haven’t really known how to answer.  I don’t identify as an optimist or a pessimist, yet I refer to myself as a “pessimistic realist,” which to me means I look at things in a way that is realistic and based on the fact that life can be good at times but it isn’t always perfect and that if you’re mentally prepared when crappy things happen, they might be a little easier to deal with. So, in regards to my glass, I guess I’m a “that glass has liquid in it and it could totally spill at some point, so you better be careful” kind of person. 

It’s no secret that our personality types impact our parenting. This is no different for special needs parenting, and actually might even be more apparent.   We had an event over the weekend that has me questioning the way I look out on things and reminds me that as parents, we can analyze how we handle things and make changes as we move toward being our best selves.

My daughter, Iris, is 9 and she has been struggling with math for a long time. Iris is diagnosed with a genetic condition that affects her development on multiple levels and, as a result, her motor skills are so impaired that it has affected her ability to benefit from common hands-on supports to learning, like using manipulatives, Touch Math and other methods that often help kids make sense of otherwise confusing concepts. As the expectations get harder by grade, she falls more and more behind as her acquisition of basic skills and facts is math is extremely slow. Yet, we press on.  Our biggest math goal right now is for her to learn her basic addition and subtraction facts as these are foundational to many life skills.  Her progress has been slow, but she does continue to increase the number of facts in her “known” pile.  Last weekend, we were going through cards and the 9s were especially hard for her. She hadn’t learned them and no matter how many times I repeated the facts and she said them back to me, many of them didn’t stick in her memory. Our older daughter, Charlotte, who is 10, trying to be helpful, started explaining to her that since she knows her 10s, her 9s should be easy. “Just think of what you would get if you added 10 to that number and then subtract 1, Iris.” Though I found it nice that Charlotte was trying to help, I shut her down. “That is too confusing for her Charlotte. I think explaining it like that is going to make it harder for her.”  In the moment, I couldn’t comprehend that she would be able to understand that rule or way of looking at her math facts.

Fast forward to this past weekend. We had gone through the cards multiple times and she still wasn’t remembering many of the 9s. I decided to give it a shot and repeated the rule that Charlotte had the week before, walked her through two examples and then started again. She stared at the first card, said the rule out loud, and gave the correct answer.  Same for the second, and the third and the forth, until she had gotten the whole stack of 9s. I mixed them up and she did it again, the second time, not saying the rule, just looking at the card, thinking for a second and knowing the answer.  Then, tonight, two days later, I pulled out the cards and she still knew them.

I have sat next to parents countless times and encouraged them to push their children to do more. I have reminded them to be positive and to teach their kids to be independent.  I have taught them not to sell their kids short and to believe that anything is possible.  But, in my own life, I guess I’m not so good at that.  I will whole heartedly admit that when my own child was diagnosed with a disability, I became a different kind of teacher. I faded on pushing families to do more, because I had learned that it isn’t always possible to do more and that feeling like you should always be doing more is really, really hard. And that it can also be really, really dangerous in regards to your own well-being.  I shifted in the direction of praising families for what they were doing, even if I thought they could do more and started helping them come up with ways that they could push their kids harder or believe in them more in a way that worked for their family and helped them maintain their sanity as caregivers.

Parenting a child with a disability is a role like no other.  We are surrounded by people and situations that constantly remind us how much harder the world is for our kids.  Many of us tend to focus on the REAL, because you can manage potential disappointment by lowering expectations.  This weekend, I decided that I want to be more aware of when my opinions may potentially limit my child, just because I think something will be too hard or too confusing. She should NEVER hear me say that she can’t do something or that something is too hard. And, I need to model for my ten-year-old that her sister is capable and though she may need accommodations, with support she can do a lot more things that people think she can. While I think there is value in setting realistic and achievable goals, I want to believe that my child is going to accomplish whatever she wants, and if we believe in her, I think she will. Because she learned her 9s this weekend and no drinks were spilled in the process and that’s pretty special.

Day Three

Written on 3/16/2020

What a weird time we are in.  As a generally anxious person, I have created more than my share of disastrous scenarios in my head over the years, but nothing I ever imagined could compare to what is happening in the world right now.  And the entire world is experiencing it.  This virus is affecting the lives of every single person on this planet.

 Certain sets of people are experiencing this situation differently than others.  I can certainly tell you that parents of children with special needs are facing a unique level of challenges, as I’m sure many of you can relate to.  Families of children with special needs typically thrive on routine and our routines have been unbelievably interrupted in the past three days.  We are facing new fears, of illness, of being able to support our children in learning as they would be learning if they were in school, of having to walk away from the supports we all get from our children’s schools, therapies, respite workers, fears of how long we will be living like this and how much worse it will get before it gets better. As I write this, notifications are coming on my phone, letting me know that the US is not prepared for this and we likely won’t have enough medication and supplies to treat people who get sick.  I worry about all of this and then even though my eyelids are so heavy and the fatigue from the day has set in, I force myself to stay awake a little longer, because I still need to get out the green paint, glitter and food dye, so that I can make St.Patrick’s Day special for my kids.  A leprechaun will come in the night and make a mess (that I will have to clean up tomorrow) because I know it will make my kids happy and it will provide them at least some level of normalcy during this absolutely crazy time.   Because that is what we parents are doing right now, trying to make things feel normal. Some of our kids can understand what is happening a little bit, they are being flexible and can be independent at home.  My Iris does not fall into this category. She has had tantrums, crying over changes in routine, isn’t able to understand why she can’t go to school, why I keep making her wash her hands and why my anxiety sky rockets every time she puts her fingers in her mouth (which, by the way, is every minute).  She can’t be left alone for more than a minute or two for fear that she will put something in her mouth.  I am tired, she is tired and this is just the beginning. 

As schools close and we close our doors to our family and friends, sheltering inside, trying to stay healthy, trying to keep others healthy, we are all facing challenges.  Adjusting work schedules, facing possible loss of income, becoming homeschooling parents overnight, worrying about the global impact of disease, worrying about how life is going to change in the upcoming months… My hope is that we can all work together to make it through this absolutely insane time in our lives.

Day Four of Quarantine

Written on 3/17/2020

It’s been four days since they closed my kids’ schools. As of now, they are closed for three weeks, but realistically, we all know it will be much longer.  Like most moms of school aged kids across our country, I have essentially become a homeschooling mom over night.  Except I’m not just homeschooling. I’m homeschooling a child with special needs who requires constant supervision to keep her safe. And at the same time, I’m also supposed to be homeschooling my 5th grader who honestly has gotten zero attention from me in four days because I can’t turn my back on my 3rd grader for a second.  Over the weekend, she was crying and crying about the changes in routine, too little to understand what is happening and why her school, her routine, was closing. Yesterday I turned my back and she fell and cleared an entire nightstand full of things in the process, hurting her hand and arm.  Today I turned my back and she choked.  I turned around to see her struggling for air and had to swoop her up into the Heimlich maneuver, while slamming my hip against the kitchen counter in the process.  After dinner, she took herself to the bathroom and forgot to pull up her adorable St. Patrick’s Day Dress and peed all over it and the floor. Earlier today, she coughed and my heart stopped for a second because she has asthma and a crappy immune system I’m in constant fear that she will get sick, or that I will get sick and not be able to care for her.  I’m tired and its only day four.  I want to curl up in a ball and cry about the heartache that is happening across the world, but I have to hold it together and keep my eyes on my kid. At all times.  I can’t put on Netflix and take myself to the other room for a break, because if I do, she will be getting into something or get hurt.  

I’m not telling you these things because I want you to feel sorry for me. I don’t. I love my children more than life itself and I’m happy to do the things I need to do right now to keep my family safe and I’m forever grateful that my situation is flexible enough that I can be here with them all day everyday without too much stress of dealing with work or childcare or other commitments. I’m thankful that I have the skills to teach my children and to deal with behaviors and I’m thankful to have the support of a husband who gives me breaks and helps.  Most of all I’m thankful that my children have been relatively good, have adjusted relatively well to the routine and seem to be enjoying the activities we are doing together at home.  The reason I’m telling you these things is because the situations of the hundreds of thousands of parents of children with special needs right now across the country are not just like mine.  There are parents who have children who are extremely aggressive and their only breaks or downtime or time to feel safe are when their child is at school. There are parents who don’t have the skills or education to work with their children at home, to be able to manage their behaviors or to know how to help them try to continue to learn during this unbelievably hard time. Typically, parents of children with special needs rely heavily on their support providers.  We are so grateful to the teachers, therapists and respite providers who are such strong and valuable members of the teams that help our kiddos learn on a daily basis.  Right now, across the world, parents of children with special needs are doing this alone. Without their teams, without their families and friends, and they are tired.  My heart goes out to all the families who are becoming their child’s everything overnight and I wish you so much luck as you try to navigate these new schedules.

If you have a friend who is a parent of a child with special needs, check on them during this insanely crazy time.  Understand that while many typically developing children are playing in their rooms, doing school work on their own or with only a little support or watching a movie and some parents are reading or folding laundry, doing a conference call for their job or cleaning, they might be literally trying to keep their child alive.   Many parents of children with special needs can tend to isolate themselves in general, but forced isolation is probably one of the hardest things that could befall a special needs parent. 

For those of you who are trying to navigate this new way of life, I see you. I wish you all the luck in the world and I will pray that each of your children settles into a routine that is manageable and safe as the days tick by.  We can at the very least be thankful that every day that goes by is one day closer to being done with quarantine!

I find myself struggling right now because my first line of defense when someone is going through something hard is to say, “can I do anything to help you?” But right now, there is literally NOTHING than I can physically do to help most people.  One way that I can try to help people virtually though, is to share my ideas for activities and instruction with families virtually through this site, Facebook and Instagram.  Check out my behavioral blog for education in the area of ABA or in the “Teaching Social Skills in Social Isolation” (Teaching Tips) heading at the top of my homepage.  I believe that we will get through this and that we can do it, from home, physically apart, but together at the same time.

The Results are In

Originally written 10/22/19:

It has been three months since we received Iris’ genetic diagnosis and to be honest, it Is still sinking in. I actually wonder if there is ever a time when a diagnosis like hers fully sinks in as the magnitude of the statistic is immense. Several years ago, we participated in a research study about autism - you can read about the study here! SPARK FOR AUTISM

The study is a large scale genetic study that looks at the genetic make up of individuals with autism and their immediate family members. We filled out a few assessments, sent in some saliva samples in an easy to use kit they sent directly to our home and that was it.  We were told that we would get results only if they found something abnormal. So much time had passed between sending in the samples, that I honestly did not expect to hear back, but then, in early July, I got an email that stated that they had results for Iris and that if we were interested in learning the results to contact them.  I think I actually stopped breathing for a few seconds when I read the email. For years, doctor after doctor has said things to us like “your daughter is so unique, we have never met anyone like her before,” or “her profile is so interesting, but I can’t exactly pinpoint a cause of her symptoms” and now, we had the chance for an answer.  I knew it was going to be some kind of diagnosis, as it had to be since we were only going to be contacted if they found something.  I responded and then waited.  When the diagnosis came, it was a single page with a brief genetic report and stated simply that Iris had a condition called “Xia Gibbs Syndrome,” which I had never heard of.  We scheduled a phone conference with a genetic counselor from the study, but in the meantime, I immediately started googling (you know, like all modern moms do) and found a short list of links that would tell me more about this disorder.  As I read, for the first time in over 8 years, I felt like I was reading something that described Iris exactly. Characteristics of autism, respiratory issues, motor delays, intellectual disability.. the list went on. And then scrolling through, I saw the alarming statistics. Less than 100 people in the world had been diagnosed with this disorder. 100 people. In. The. World.  When I saw how short the list of links from the google search was, I can only describe how I felt as lost. We had been handed a diagnosis with virtually no guide book, as there is no guide book for a disorder that affects so few people that very little is actually known about it.  I felt like overnight, we had gone from the autism statistic of 1 in about 60 children being diagnosed, to being 1 OF LESS THAN 100 diagnosed.  Literally every single person in the world with her diagnosis could all be standing in the same room at the same time.  The thought of this is profound to me, and very hard to grasp.

In the past three months, we have been learning and we are going to continue to learn all we can about Xia Gibbs in order to help Iris and also to hopefully help other families who are facing the same diagnosis.  I have learned that there are more families who are diagnosed from the original statistics I read that were slightly outdated and that new families are being added to our XGS family each day as high level genetic testing becomes more available. The last number I heard was still less than 200, though it is believed that there are more individuals out there who carry this diagnosis but do not know about it, due to the fact that they have not undergone genetic testing.  We are going to be going through more medical testing to rule in or out some medical complications that often come with her diagnosis and will likely continue to do this in the months and years to come. We have been contacted by universities asking for information about her, as researchers want to learn more. I have spent time talking to doctors, filling out IRB permission forms and releases of information, being asked to possibly talk to the press about the research study that diagnosed her.  We are balancing fear of discovering new risks for her with the power and medical safety that lies in increased knowledge about our child’s condition.  I have made new friends through social media with families who share the same diagnosis, and have found support from parents who know more than us and from parents who are learning along side us.

When I shared the news about Iris with one of my friends, he said “she’s basically the most extraordinary person I know.” This is a very accurate statement and as we press on through this journey, I believe that she will always continue to be the most extraordinary person I know in so many wonderful ways.  This diagnosis does not change who she is, but we hope that it is going to help us understand her a little more, so that we can give her the best life possible.

Changing Roles

*This post was written in June of 2019

In 2002, the summer after I graduated college, someone asked me what I was going to do with my psychology degree. My response was something along the lines of “I’m not really sure, but I can tell you one thing, I’m NEVER going to be a teacher.” And, by “something along the lines of..” I mean, “the exact words that came out of my mouth were….”   I was so tired of hearing over and over again “oh you’re majoring in psychology, guess you’re going to be a teacher.” I didn’t see myself as a teacher. I didn’t want to be a teacher.  In my senior internship, I got the ONE coveted position of intern to school psychologist.  Out of a room full of students who wanted to be school psychologists, I was gifted the one actual psychology internship, while the others were placed as classroom aides in various special or general education programs. I still don’t know how it worked out that I got that spot, but guess what?  After I got it, and did it for a semester, I had decided that I also didn’t want to be a school psychologist.   So here I was, newly graduated, with no idea what the heck I was going to do with my life because now I knew that I not only didn’t want to be a teacher, but I also didn’t want to be a school psychologist.  But it was really fine because I lived in Santa Barbara at the time and the beach was calling me.

Fast forward to about 5 weeks later, when I had landed a job for the summer as a classroom aide in the summer program for the school district where I lived.   My internship advisor had recommended me and when I walked through the door, the panicked secretary said “you’re the one that Jim sent right? Can you start tomorrow?” No interview, no questions, nothing. The desperation (that I now understand fully) of someone who needs to staff a special ed aide in a summer school program so badly that she will literally take anyone who walks through the door.  I didn’t know it at the time, but while on assignment that summer, I would be pointed in the direction that my career would ultimately go from there on out.

I had been assigned as an aide in a preschool class that was specifically for children with autism and it was my first day.  To this point, I had met a total of two children who had autism, both of whom were diagnosed with Asberger’s Sydrome, and I had yet to meet a child who fell on the more severe end of the spectrum.   But then, the most beautiful child I had ever seen walked into the room.  His mom started talking to the teacher and he stood there in the doorway, silently looking up toward the ceiling moving his fingers next to his eyes.  He was four years old and he was wearing a red shirt.  I can remember the scene in my head exactly, as that was the moment I said to myself “this is it. This is what I want to do. I want to know what he is thinking. I want to connect with him.” And thus began my career in the field of autism. 

Over the next few years, I had applied to a teaching credential program and became a… (gasp)…teacher. I got my master’s degree in Special Education and was teaching a moderate severe autism preschool program. I had my first baby, Charlotte, and shortly thereafter, I had my second baby, Iris. And that is when everything changed. Iris wasn’t breathing when she was born.  I became hypervigilant about watching for signs of delays, as being in the field, I well knew the risks of traumatic birth. When she was a month old, I told her doctor that I thought I saw signs of delays. He told me I needed to calm down. When she was two months, I repeated myself and he told me to calm down. When she was four months, I broke down in tears to her doctor and he told me again to calm down but agreed to order an assessment so my fears could be appeased. Then, when she was seven months, we had the assessment and when they showed us on the bell curve where she was performing, we knew that we had a very long road ahead of us. The whole time, I knew deep down in my heart that it was autism and a little over two years later, a different doctor confirmed that it was.

In the past 8 and a half years since having Iris, I have changed the way I practice ABA. I have acquired a new understanding of the field as I have learned what it is like to not only teach a child with autism, but how to raise one. One week ago, I had my last day at work as a BCBA.  I cried my way through an exit interview for a job that I loved for 7 years, at a company that I helped start because at this time, I know deep down in my heart that this is the time for me to focus on my own child, to extend the bulk of the effort of my skills to her. Following the interview, I cried all the way to Iris’ school, pulled my shit together, put on a smile and picked her up and then drove straight to her ABA clinic meeting, where I would discuss her progress, behaviors and programming with another BCBA. An hour after I had “left the field,” I was back in it. Because the truth is, I won’t ever leave the field. Because we live it.  And that’s ok, because we love it and I hope that even in this changing role I will have, I can continue to help guide people along the way and maybe provide some laughter, all the while being the best possible mom I can be.

My hope is that this site can be helpful to those who might be going through something with their own child, and to those who love these people. In the different positions I have held in the field, I have acquired a great deal of knowledge that can help guide families in a forward direction. I’m here to do that and if I can help even one family, then I will know I have accomplished something great.