I have told everyone about the struggle with food for Phoebe. When I say it’s a struggle…I mean a true struggle. We all have our relationships with food, but this one is different. Phoebe was tested at a young age for Prader-Willi Syndrome. Prader-Willi is a genetic disorder characterized by the inability to feel full (missing a chromosome). Phoebe fits all the characteristics. She had poor muscle development as a baby, developmental delays, and eating issues. She always cried when she was done eating, even when she was a baby. She always wanted more. Her genetic test came back negative. She did not have Prader-Willi, but I often wonder.

When she was young, I had the control over her eating. She didn’t have the ability to make those decisions. She ate well, and had a variety of foods. She liked everything. Things all changed when she hit puberty. I can remember the day clearly. During the night, she got up and went to the kitchen and was foraging for food. I startled her, and she ran back to her room. From that moment on, it has been a struggle.

I bought locks for our pantry, and our refrigerator. Finally, I gave in and got a lock for the freezer, because nothing was safe. She would occasionally look through the trash even. This has been going on for 12 years. You can constantly hear, “where is the key???” in our house. If I let my guard down and leave something open, she will eat anything she can get her hands on. She has eaten whole bags of snacks (large), and bags of salami in one sitting. Even healthy foods will get eaten in abundance.

We have started new meds to “curb” appetite which have not worked. I am not sure it has anything to do with hunger, more than it is control, and anxiety. She likes the sensory feeling of food in her mouth. She has no idea that food leads to weight gain.

Most of her anger, and lashing out comes from the control of food. She will scream, hit and throw things when she is not given what she wants. We have worked on point systems, and earning certain “snacks.” I hate saying this out loud, because it’s hard to admit failure. I feel like a failure when it comes to her health. As soon as some technique works, she changes her game, and I can’t keep up. Even her brother knows she manipulates and knows when to use her size and strength to get what she wants. You may say, “this is simple…don’t buy them.” Right. Ok, I don’t. Then, she eats things like sugar out of the sugar bowl, or raw noodles, or 6 apples from the fruit bowl. She even will eat butter. (Also, I have a son who works out and likes a snack now and again–which usually gets gobbled up by his sister). Add in a pandemic, and nothing to do, and it’s unbelievable the struggle over here.

I worry daily about her health, and am overwhelmed with what else to do. In the meantime, I’m trying to work, stay healthy myself, and do the other mom things. We have started walking again, and I push her to walk as far as she can. This is not easy, but I’ll keep trying.

Bring on 2021, and all its challenges that lie ahead. (Can I nap now?)

Something has changed. Lots of things have changed, I know that. Something has changed in this house. This whole pandemic has made life very difficult, and we are not even sick. (THANK GOD) At least, that is what I’m blaming it on.

We stayed in our home without leaving for what seemed like a year, however it was more like 8 weeks. All the social skills Phoebe had been learning at school and home, went right out the window. We had the most difficult summer in years. Our social life was near nothing. Her normal outings stopped. She didn’t get to go to Kokomos, out to dinner, or see her caregivers as much as she needed to. I figured there was an end in sight, and these things would all go back to normal. This is what I believed. It did not.

There is no end in sight, and our lives have taken a whole new turn. I don’t even know how to explain what is going on. All I know, is that she doesn’t want me to leave her side, or go anywhere without her. She doesn’t really want her caregiver to be around her. We work really hard to get her to leave the house with her friend. She doesn’t even really want to go to school some days. She wants to stay by me. ALL THE TIME. Phoebe’s behaviors are all over the place. It’s unpredictable and stressful for our whole family.

I work from home teaching virtually…and maybe this has something to do with it. Her brother goes to school every other day for now, and maybe that is it. Her classroom is different with not a lot of moving around, that’s got to be some of it, right? She has to wear a mask on her sensory ridden face every day all-day. That’s hard for everyone, let alone her. She has to wash her hands, or use sanitizer (which makes her gag), more than I already make her. We can’t go to Target and shop like we used to. That’s it for sure. That even bothers me.

How do we even begin to figure this out? Change her meds. Have her lose weight. Get her to bed earlier. Make a schedule. Have a points system at home to earn things. Working on all of them, and done most of them. The teacher in me will find an answer. Nothing has changed so far.

However, something has changed.

Covid 19 has changed us, and not for the better.

Trying to describe what my life is like at home is difficult. On one end, I have a normal 18-year-old who takes care of himself, and does more on his own than I care for. He doesn’t want to spend too much time with his mom, and is your “typical” teenager. I love seeing his sporting events, and spending time with him when he allows it. On the other end, I have Phoebe. Phoebe is… Phoebe. She is never predictable, and is the only person who has ever made me scream at the top of my lungs in anger. This child/adult has never had one year that didn’t have some sort of bump in the road. Not one autism/EI strategy in school has worked for her (at least not for long). She figures it out and changes it up. While we know it’s unintentional, she still does it. Whatever gets her the most attention is what works for her. Everything is about attention for Phoebe. EVERYTHING. And, she has been getting my undivided attention for 21 years, 24/7, 365 (give or take a day).

Phoebe has some traits of a typical 21-year-old. A 21-year-old who wants constant fun and attention. I see glimpses now and again. “What can we do tonight mom?” (at 9 p.m., while I’m in my pajamas) She asks about dating, and marriage, and when she can have a boyfriend. She wants friends to play with CONSTANTLY. Her brain is conflicted. She also has traits of a small child who needs help with nearly everything she does. Life skills are something we work hard at, but I don’t see many changes. She struggles with social appropriateness even though we have modeled and taught. Modeled and taught. It’s been 15 plus years of trying, and she still has the same instinctual reactions that take over (and I still have the same instinctual reactions to correct her).

That all being said, I’m 50-years-old. I’ve been doing this for 21 years. I have been going to IEP’s for 15 years. I’ve been doing mental health appointments for 10 years, driving her to everything, and finding babysitters for 21 years. 21 years. I see many parents of special needs children doing this their whole lives, but I can’t see how that is possible. My body is worn out. My mind is worn out. Quarantine and Covid has done a number on my small family being at home. I am trying to teach at a high level (that meets my standards), be a good mom, daughter, sister, and maintain a healthy lifestyle. Well, that just doesn’t happen. My time is spent taking care of Phoebe, so everything else gets put aside. Being someone’s caregiver (or mother) is not for the light hearted.

I’m worn out.

I am coming upon 50-years-old. I can hardly believe that. I was just finishing college, having babies, and starting my life. Now, I’m getting to the mid-life part…and not sure where to go from here.

When this pandemic started, I started a notebook/sketchbook of important information for my son. This included everything he needs to continue running this household, if I die. If I die? If I die!! I couldn’t believe I had to write this out. The reality is, it needs to be done. He needs to know all of this. (Even though he wanted no part of it) The most enlightening part was, what will become of Phoebe? Isn’t that the true question. If I die, where will she go, and what will happen to her. I don’t want that burden to fall upon her brother’s shoulders. It’s not his responsibility. He has dealt with a lot, and he deserves a life.

This started my thought process of what I want in the near future. For all of us. At some point, Phoebe needs to live somewhere that can support her needs 100% of the time. She needs friendship, work, fun, full-time care and compassion. While I can do those things for her, I also need some time for myself. My nearly 50-year-old body can’t keep up with all of it, mentally and physically. I can’t entertain and teach her every day like I have for the last 21-years. I just can’t. I also deserve all the same things she does. This starts the slow, and tedious process of how I can figure all this out. It will take time to convince her that she will like living somewhere with friends like her, and that she will like having her own space. (Right now, she wants me (or her caregiver) all the time). I can see glimpses of a 21-year-old in her. She wants independence, and love. She deserves that. Everyone does.

I have been involved in a new community for special-needs individuals being designed for our area. Phoebe attends A Place for Grace Daycare in Saginaw. It is for Special needs children and young adults (and typical children). The owner, Jenny, has the same wishes for her own daughter’s living situation someday. She has started A Place for Grace Community. A Place for Grace Community has a mission and vision that adults with intellectual and developmental disabilities enjoy total life experiences in their forever homes. The board is looking for property and figuring out how to build this community in our area in the very near future. There will be houses, staffing, job sites, daycare, etc. I am so excited to be a part of this process. I can’t imagine any other type of home for Phoebe. It gives me hope.

While we work on this amazing idea, and possibility…I will work on Phoebe. I will get her started on the idea of being an independent, happy woman. She NEEDS that. I need that.

Nothing like a Pandemic to make me look at my life more closely.

There are days I don’t want to do this. I just don’t. During quarantine, this has become much more prevalent.

I don’t want to get up at 5 am to a daughter who is asking questions…without really caring or knowing that I am still in a deep sleep. I just don’t. (“Mom…can I get my breakfast. Are you getting the dog up? Did Brendan stay up late?”)

I don’t want to answer whether it’s raining or storming today for the 100th time. I just don’t.

I don’t want to argue about why she shouldn’t have a sandwich for every meal, and why it isn’t healthy. I just don’t.

I don’t want to explain that having a snack every hour is not a good idea. I just don’t.

I don’t want to have to remember to lock the fridge and the pantry EVERY time we use it…so that she doesn’t steal enough food for 5 people.

I don’t want to help her in the bathroom, because she just can’t seem to get herself together. I just don’t.

I don’t want to be yelled or hit, because she is anxious or pissed I won’t give her more food.

I don’t want to figure out who will watch her, so that I can have a life. I just don’t.

I don’t want to worry about her teeth, her weight, her school, her life in the future. (All moms know this). I just don’t.

I don’t want to make her clean her room, and then argue for 20 minutes why she should. I just don’t.

I don’t want her to seek attention all the time. (Grab the dog, throw food, yell something bad, say something mean, etc.) I just don’t.

I don’t want to be so exhausted at night that I can barely stay awake. I just don’t.

I don’t want to do it today. I just don’t.

I’ll keep plugging along, like I do every day. But, today….I just don’t.

Here we are. Nearly 6 weeks later, and still in “stay-home, stay-safe” mode. I’d love to write that it has been easier in the last few weeks, but I’d be lying. While the newest member of our family (a 14-week old Golden Retriever) is doing well and getting the hang of life, the oldest child is not. I am set on keeping her healthy, so we have not left the house much. She doesn’t understand what 6-feet-apart means nor what “don’t touch your face” means. I spend the extra money to have groceries delivered because “social distancing” is not something her autism understands. In fact, I believe it might be the complete opposite in her case.

I am working from home doing art lessons for my 700+ students. It’s a lot of work, but with an amazing team, anything can be done. I manage to do quite a few online meetings a week, and get a video lesson done with Phoebe right by my side. (And, when I say right-by-my side, I mean it.) If she could sit on my lap, she would. The uncertainty is so difficult for her. (it’s difficult for all of us)

Phoebe loves her school, loves her teachers, and loves her friends. Even in times when she is mean or says mean things…she truly loves them. The social part of her school is what keeps her motivated. Usually, on the last day of school, she cries and gets so upset. This can last for days, and months. Quarantine has thrown us in to a new sadness. She cries after ZOOM meetings with friends and teachers, she cries when we talk to family. She is by my side all day, and night. (Only in her room when she sleeps) With her constant need for attention, this is trying on the whole family. Her anxiety has regressed, her social skills have regressed, her sleeping has regressed. Things are spiraling, and I don’t see an end any time soon.

I have been researching ways to help her, ways to get her back to where she was. Let’s be honest…it’s not going to happen. We are doing the best we can, and hoping for things to go back to normal soon. In the meantime, we will continue to order groceries, forgo slurpees, save money on gas and fast food, and yes, order hundreds of dollars worth of Skittles and Starburst on Amazon (Yes, I changed my password).

Stay safe and healthy.

This post should come as no surprise. We are in unchartered waters. March 13th was our last day of school until April 6th. (Now April 13th). Our Governor called for the closing of all Michigan schools to help contain this horrible virus. Immediately, my anxiety started and then Phoebe’s anxiety heightened. The closing of schools, and local businesses was serious business. Phoebe started to hear things too, things she isn’t capable of understanding. Her life is all about routine. She gets up, goes to her school, goes to her daycare and then comes home. She gets slurpees when she has a good day. ALL OF THIS STOPPED. Talk about stress. She couldn’t understand, even when I explained it to her. I showed her numerous social stories, and she just didn’t understand. Death and sickness are difficult for everyone- especially Phoebe. It’s not concrete and doesn’t have one answer. We had 100 meltdowns in the first week. I had to figure out how to let her have anxiety…and had to figure out how to hide mine.

The more I heard, the more I worried. I am not one to hide things well. (big shocker) What if I get this virus? I am the sole provider for these 2 children. With social distancing and quarantine imminent….I began to have worse anxiety. The scenery played out in my mind 100 different ways. My conclusion was that Brendan would have to take care of Phoebe if something should happen to me. He would have to stay here if I’m hospitalized and take care of this house. My first step was to make notes. I got out one of my sketchbooks and started writing things down. Things he NEEDS to know…just in case. Brendan did not love this. As I wrote, the reality hit him and he asked questions. I told him to be smart, and LISTEN to what I tell him. He has been nothing but helpful and I can’t thank him enough for being a “grown-up.” Things that are important to teenagers ended as well. No social outings, no spring break, no school, no girlfriends, nothing. He complied…without much complaint. I was honest with him…I CAN’T GET SICK. WE can’t take that chance.

In the middle of the craziness, we were waiting on a new Golden Retriever puppy. (Yep. It was planned way before). When the Governor said we were going to to house quarantine…we had to go get the puppy 2 weeks early. Cue the additional anxiety a brand new puppy brings to a house. Let’s just say we added chaos on top of chaos. Phoebe is not a neat person. Her brain doesn’t work that way. She moves from one thing to the next. She needs a list to complete if we clean. Everything she owns is on the floor. We had to get a gate for her bedroom door, so that the new puppy wouldn’t go in her room. Phoebe was truly not excited for ANY of these changes. She played the role and said she was super excited, but it was the worst timing ever and made her personality “over-the-top.” She is needing attention 24/7. Worse than I’ve ever seen it. We get up at 6 am, let the dog out, play and then he goes back in his crate around 7:30 am. She sleeps and then when the puppy gets up, she gets up. We walk him, watch him…and she is obviously super anxious. “Does he need to pee again? Will he poop in the house? Isn’t he tired? Do we need to watch him every minute? WILL HE STOP BITING?” The list goes on.

The worst part is, I can’t give her a schedule for this virus/quarantine. I can’t give her a time when this will stop. This new schedule and routine has no end in sight. Each day brings a list…and a schedule for THAT day. I add in one new “fun” thing for us…if she will do it. (Anxiety is a horrible thing) The only part I can tell her is that the puppy will grow, and get easier each week. That I do know.

For now, we have a new routine, and a new life. We take it day-by-day.

There’s no manual for parenthood.  Parents can read books and get advice from other parents, but there is no go-to manual.  There isn’t a manual for parents of special-needs children either.  Each case is so different, it wouldn’t be a good thing anyway.  Our Autism/PDD-NOS and anxiety/Emotional impairment is hard to figure out.  Every step of the way has been a challenge.  You may think I’m being dramatic, but you can ask my other child what it is like (or ask my mother).  It probably gets old that I talk about it a lot, but this is the life I live.   I wish I could write a manual on how to do this for the next family having to deal with it.

This job as special-needs parent is 24/7.  Just when we get used to, and come up with solutions to behaviors, school issues, reward charts, and anxiety…it changes.  This has been going on since 1st grade.  Think of that.  That’s 14+ years of being creative with parenting.   I have used techniques recommended by specialists, therapists, doctors, and everyone else.  Sometimes they work…and sometimes they don’t.  It’s literally exhausting.    Med, behavior, life, school, and woman changes.  I want what is best for Phoebe, and want to see her happy in life.  That is the ONLY thing I want.  I want her to be healthy, and live a life that she loves.  Am I doing that?  I don’t really know, but I’m trying. There’s no manual.

Her teachers, at the post-secondary school, are some of the MOST amazing people on the planet. They do not get enough credit for the work they do.  Her teachers have been so good.  They are creative, hard-working and compassionate.  Not everyone I have come in contact with is that way with Phoebe and I.  They know that a few weeks/months will go by and Phoebe will change-up her behaviors.  They come together, get a plan and try it.  Sometimes it works, sometimes it doesn’t…but so far, they have kept trying.   I appreciate them so much. They don’t have a manual either.  They have been trained in certain areas, and all else is just them having compassion for my adult child.

This year will bring more changes, more behaviors, and more exhaustion.  I’m pretty sure that will never end.  I’ll continue to try all the techniques I’ve read about, and others have tried.  I’ll listen to advice, and try those things too.  I’ll try to get more funding for more respite help, and I’ll try to figure out her life for the next 20+ years.

I’ll keep plugging along with trial and error, because there is no manual.

Sometimes, autism sucks.  It just does.

Sometimes, people don’t understand.

Sometimes, I feel sorry for myself.

Sometimes, I cry, because it’s too much.

Sometimes, I laugh about this life.

Sometimes, I have guilt.

Sometimes, I eat when I’m stressed.

Sometimes, anxiety is a bitch.

Sometimes, being the sibling (or the mother) of someone with autism is super hard – even if you are REALLY good at it.

Sometimes, balancing work, family and life is stressful.

Sometimes change is hard, but rewarding.

Sometimes, a bad day is just that…a bad DAY.

Sometimes, we make sacrifices.

Sometimes I cry, because huge strides are being made.

Sometimes, I laugh, and laugh.

Sometimes, friends and family make all the difference.

Sometimes, telling my 20-year-old that Santa does NOT exist…makes me laugh.

Sometimes, you have to listen to your gut.

Sometimes, taking a much needed break away is what you need to keep doing this.

Sometimes, a New Year is a welcomed change….

Here’s to 2020. 🙂

The last few months have been super busy.  During a pre-season soccer game, my son broke his jaw, and had to have surgery the next day.  His jaw was wired shut for 6 weeks, and he could only drink liquids (or super blended things that would go through a straw).  He needed me, and I felt badly.  I felt badly it was noticeable that I don’t spend that much time with him on a weekly basis.  I don’t worry about what he eats, what he wears, when he sleeps or when he showers/washes himself.  I don’t make sure he brushes his teeth, or wears the right shoes to school.  I don’t even worry if he does his homework.  He knows. He just does.

Phoebe does need these things.  On a daily basis, I am doing more than just these to make sure she gets through life.  She can’t remember things, struggles with certain things, and doesn’t make good decisions (or makes great decisions for a 7-year-old, not a 20-year-old). She even needs someone to tell her what foods are good for her. Phoebe needs attention.  She needs someone every day to reinforce those good behaviors and good decisions.  Her team at school does this for her, and I do this at home (and her sitters). When this accident happened, Brendan needed me.  He needed me to help him with making the right foods. He also needed me to help manage his pain and what he could/could not tolerate.  He needed his mom.  I was reminded that he too needs my attention, and my time.

Phoebe did not love this attention taken away from her.  Despite needing the help, she also craves attention whether it’s positive or negative.  This has been the case since she was 5.  When I got up at night to check on Brendan, she would get up.  When I would give Brendan his meds, she would follow me to his room.  She would be mad that he was only drinking liquid, and that I should make him eat regular food.  (tried to buy him Oreos a few times) She wanted him to stop talking like he was.  (through his teeth) She wanted him to play soccer, so she could go to the games and watch.  She did not like HER routine upset.  Anything out of the ordinary, and her world is put in to a spin.

Let’s be honest, I don’t love my world being put in to a spin either, but I can talk myself through it. I usually know there is an end in sight.  (thankfully) When all this was said and done, and Phoebe’s world went back to “normal”, I felt sorry for her.  I felt more sorry than I have ever felt for her.  Sorry, that her adult body can’t regulate emotions and feelings.  Sorry, that anything out of the ordinary gives her such intense anxiety that she doesn’t know what to do with it.  No amount of medication seems to help.

While on any given day it drives me CRAZY….what must it be like to live in her body?