I am a Spartan. I have been a Spartan my whole life. My mom, my brother, my two uncles, my cousin, my nephew, my niece, and now my son, are Spartans. Since I was 15 years old, that was all I wanted to do. I wanted to go to MSU. I wanted to be like my mother and my brother. I got my wish, and it was truly the best time in my life, and I’d go back in a heartbeat. I met some of my best life long friends there, and made the greatest memories. My son was literally brainwashed to be a Spartan from the time he was born. He has had the privilege to attend some of the greatest Spartan sporting events in his lifetime, including the 2014 Rose Bowl. When we went to an alumni event before the Rose Bowl game, we entered and it was a sea of Green and White including an Ice Sculpture of the Spartan head. He said, “Mom, I think this is what heaven looks like for Spartans!”

This week, the unimaginable happened. We’ve all heard it. As a mother, it was awful to hear that fear in my sons voice, and I am SO thankful he was safe. Some were not so lucky. This whole week has been so hard to digest. There have been tears every day for our MSU. Everyone deals with trauma differently, and I do the typically sobbing reaction about everything. Unfortunately, it seems like school shootings happen so often, that as a parent, and an educator, I am not surprised anymore. I think it becomes something different when it hits closer to home. I was a mess all week. My son and I struggled with how to handle the whole situation. My son’s experience at MSU will never be the same. He will forever have a fear.

You can imagine if a “typical” adult struggles to handle this, that Phoebe really struggled. I kept the shooting to myself because Phoebe was sleeping. She had been sick all day, and this information would just add to the chaos. Finally, the next day I told her what had happened. This information was truly too much for her to handle. She didn’t understand why, and didn’t understand how to respond. Her reaction is to act as if nothing happened, and that’s the end of it. She didn’t want to hear any stories. When Brendan arrived at home on Tuesday, Phoebe cried when I cried, and yelled, “I’M JUST GLAD YOU’RE NOT DEAD!!” Then ran crying to her room. While this is truly what we were all feeling, she just can’t regulate this emotion. She had the worst time while he was home, because she didn’t want him home (because things should be normal), and she didn’t want him to go (because things weren’t normal). It was a rough week. We dropped Brendan back off at school, and as I tearfully left him, Phoebe just yelled and cried. She didn’t know what to do. It was terrible. She sensed both our stress, and didn’t know what to do. Now, we are home and I still cry when I see something about the shooting and Phoebe tells me to “get over it.” Her heart can’t take me crying anymore. She needs her normal. I need normal.

My Spartan heart hurts. I wish we could “get over it” and move on. It’s going to take some time to do that- if ever. I’m not sure MSU will ever be the same. In the meantime, I am sure that the MSU student body like my son, including alumni like me, will get something done about school shootings. I believe that. We are not going to sit down and let this keep happening. We must do more. In just one weeks time, things are already getting done on campus to make it more secure and to make students feel safer about coming back to their Spartan home. I’m ready to help. I’m ready to “get over it” and make sure students and faculty are safe. This country needs that.

So, as they say, Spartans Will.

SPARTANS WILL.

Autism is messy at our house. I mean literally messy. When there is a touch of ADHD in there, things happen quickly and get chaotic. Phoebe can wear up to 5 outfits a day. She’s not a clean person, so these need to be washed at the end of the day. When I say the laundry is piled high, I mean piled high like our washer and dryer have been broken for 6 months. I can’t keep up. Even if she “helps” with the laundry, I can’t keep up. It’s a losing battle. I never feel satisfaction that the laundry is done. Brendan brings his home from college at holiday time, does it on his own and puts it away. He can’t even believe the pile of laundry 2 people make.

Her room is another entity. I always imagined this cute room with mauve colored walls, and adorable furniture. The things you see on Pinterest. Her room is her safe space. She can eat, watch tv, and color with her 1000 markers. She can tune things out or be able to relax in her own space. However, she doesn’t consistently follow her rules for keeping things OFF the floor, and leaving the sheet on her bed. She consistently draws on her furniture with marker (and her walls). Thank god for good paint and magic eraser. Every day we clean the floor and make her bed. EVERY DAY. It’s so exhausting. I have tried every trick. Nothing works. I take things away, and take away her currency at the time. It still happens daily, and then she gets mean. She has her own vacuum in her room. If I take a day off and do nothing, you can’t believe what her room looks like.

At this stage in my life, I’m starting to want things a little more neat. I’ve cleaned out so many bins and art stuff, that I myself can’t even believe it. I got new furniture. This is NEW furniture that only a true grown up can envy. I don’t even let her sit on it. She consistently has marker on her clothes or food, and our last couch looked like it had been hit by a truck. I want things to stay nice. When she was young, these things didn’t bother me, but now it really does.

This is the part where you think I should take away most of her clothes, and get rid of 900 markers. You are absolutely right. I should also be more strict about things like her throwing the shampoo bottles out of the shower, because they “bother her.” (and subsequently not picking them back up) I should probably just take the sheets off her bed permanently and put one of those plastic things on it, and save my self some work. While we are on that, maybe I should buy a better lock for the fridge so she can’t sneak food all night long. I may even have to lock her brothers door now that he’s gone, so she stops taking his stuff and wrecking it (yearbooks, etc.). I should probably only have 1 or 2 cups and/or water bottles, so that I don’t have to ask her 600 times to bring the 20 cups out of her room. I need to also start locking the basement door because she has drawn all over the old furniture down there. She’s also taken out my good art supplies and wrecked them, even though I thought the back closet was locked. I remind Brendan to lock the freezer down there when he’s home because frozen pizzas have disappeared when she finds the door unlocked.

I’d be happy to put her in a home if I could find a decent one. A caring place with many staff that could help her with these things. Why does this seem to be so hard to find? We have an abundance of adults that need this, but nothing that really works for adults like Phoebe. In the meantime, I have to go. I just heard 700 markers hit the floor.

There’s so much going through my brain lately, that I can’t even seem to put my finger on what I want to say. One is that I’m worried as a mother of an adult female with special needs. I have to figure out her medical issues all the time, but now I really need to figure out how to prevent a pregnancy. Right now, she is in my care nearly 100% of the time. If not, she’s with a group I trust at her school. However, if I want her to live somewhere else, I need to “take care” of this. Especially now with what is going on in the world. You might disagree with me and say, “Oh that won’t happen, she would be exempt from those things.” I beg to differ. I’d like that option if it were to happen before we get something done. Can you imagine? Then, I would be 100% responsible for that child as well.

Secondly, why do we not have any suitable housing for these special needs adults. WHY? Everything I see, look at or even consider is a big NO. I’m sorry I have standards, but I do. I need a life, but I’m not willing to put her somewhere that has violations, or other people who could hurt her. She is easily susceptible to anything. Why do we have lovely nursing homes, and independent living facilities for our elderly (mostly), but not for the special needs adults? I am up at night worrying and trying to come up with solutions. I can’t even go have a drink out with friends without getting a babysitter. Who gets a babysitter after 23 years? Oh, yes that’s me. It’s exhausting and just ridiculous. I’m in the mid-life thing. I want to sit and watch football, and drink a beer. I want to work around the house, and hang out at home. I want to go to dinner, movies, trips on a whim and see friends. Phoebe wants her own life too. She wants to be entertained 24/7. She’s in her 20’s and has some 20-something thoughts. She wants to go to dinner with friends (NOT ME) and shop. She wants to go to EVERY high school football game, Spirit hockey game, soccer game, etc. I’m kind of done doing that other than occasionally.

Finally, she destroys everything like a toddler. Phoebe trashes every room in the house she’s in. Her brain works this way. She will throw things on the floor when she’s done, take every marker cap off, and draw on her bed frame. She changes her clothes at least 8 times a day, and lately picks at scabs consistently until they are a huge scar. I’m guessing you think this is not a big deal. Well, try doing this for 23 years, 24/7. It becomes a big deal the older I get. I have tried positive incentive plans, rewards, etc. I’m tired of trying some days. Now, it’s come down to bribery to get her to clean one area at a time.

Don’t feel sorry for me. I just need to vent my frustrations with this some days. As my dads friend once said, “Life is a shit sandwich, it just depends on how big of a bite you take.”

Life with someone who has a variety of disabilities is difficult. I think we all know that. However, when someone doesn’t technically look different, you expect more most of the time. I even do. I still can’t understand why she can’t tell me when she has to go to the bathroom. I still get mad when she literally puts EVERYTHING in her mouth. I ask her to do the same things everyday, and yet she can’t remember many of them, and I get annoyed. I expect her to know better. WHY? Why do I have these expectations? I know better. I have spent the better part of my adult life taking care of her. I have helped her learn all the things she knows, yet I still get annoyed when she wears long sleeves and pants in the summer, and shorts in the winter. I still get mad when she asks me when I am going to bed. (Because, she HAS to know before she goes to bed). Some days I wonder if its my 50-year-old brain. My tolerance has become less, and I can’t remedy how to fix it. Maybe I’m just a hormonal, cranky, old woman.

I think it was much easier when she and I were young, because parenting is typical then. We expect to be doing that. That’s when all the girls her age were still little girls. Normal parenting stuff. Now, these girls are women. Some have babies, are married, have great jobs, are going to college, or just basically growing up. My little girl has not. It’s been a circle of the same routine, and script for 23 years. She has a large body, and looks like she could be an adult, but she really isn’t. Her mind is young, and she needs all the help a young girl needs. I think my young parenting days have had it. I’m exhausted from the same routine day in and out. It’s mentally, physically and emotionally draining.

Thankfully, I have had a few breaks this summer that I am so thankful for. It helps. I slept a lot, and enjoyed the state of michigan with friends and family.

Maybe that will help keep my crankiness to minimum for a while. Welcome to your 50’s!

There is so much emphasis on young kids diagnosed with autism. What do we need to do when they are first diagnosed? What things can we do to support them? How do we get them in the right program? Let’s make sure we understand their strengths and weaknesses. Phoebe was about 6 when she was clinically diagnosed as having Autism (PDD-NOS), so I’ve done all that for her. She got in the right programs, got medications adjusted, and adjusted again (and again). She spent time doing different therapies (some worked, some didn’t), and got out of high school with a certificate of completion. She’s even in a fantastic post-secondary program. Yep. Did that.

Now she’s 23. At 26, she will age out of her fantastic program, and then what? Then, what happens to these adults with disabilities like autism? I’ve been looking at Adult Foster Care homes all around the Saginaw area. None of them meet her needs. They aren’t just women, or have a non-shared room, or haven’t been investigated for abuse of some kind. I get to be picky on this one, because I know her the best. This journey of finding the correct placement falls on me.

There is also this sense of wanting her to have the best life she can. What does that mean for her? She enjoys shopping, eating, going to arcades, etc. I would like her to be able to work a simple job down the line. She can’t sit at home and watch the Wiggles for the rest of her life (Insert eye roll). Her fabulous daycare (A Place for Grace) is working towards a place that this could happen – A Place for Grace Community. There would be housing, 24 hour care, activities in their day, jobs, etc. I hope this happens sooner than later as I’m not getting younger. It’s also wearing on me not being able to go anywhere without finding a sitter, or taking her to a family member.

Basically, it comes down to the fact that we have very limited resources for these kids who are now adults. We front-loaded their lives with all those things in the beginning, and then we kind of give up once they get past 18. There has to be more for them, right? We do this for our elderly and make community homes for them, it should be easy to do for our adults with disabilities (mental or physical). Right?? You’d think so.

I guess I’ll take that on too, but I can’t be the ONLY one who has this issue.

For as long as I can remember, Phoebe has always craved 100% of my attention unless I am physically away from her. Because I am her constant, she does NOT want me to pay any attention to anyone else. When I say anyone else I mean ANYONE. We went to the Secretary of State this week, because she wasn’t feeling the greatest. While there, I was making casual conversation with the woman helping us. I could tell that Phoebe was about to lose her mind. Finally, she blurted out, “CAN YOU NOT TALK TO HER PLEASE?” While embarrassing as this is, it doesn’t really phase me anymore. My younger self would have cried all the way home. Today, I just roll my eyes and keep going. Give her a time limit we will be there and move along.

This is just the tip of the iceberg. As a younger girl, she would often try to get people to walk away from us by yelling or saying completely inappropriate things (MY MOM HITS ME! I HATE MYSELF- for example). She knew I would get her away from them as soon as I could. Phoebe even does this with her own grandmother. She knows that we will talk and talk, and that she won’t be the focus of the conversation. It has been getting better as years go on, but it’s not ideal. I cringe sometimes when I see someone she doesn’t really know, because I realize it could be a complete blowup, and I’m never quite sure what she will say. She knows how to push my buttons (to say the least). Her newest thing is she doesn’t want me to be awake when she’s asleep. She has to know exactly when I will be in bed, or she will wait until I go. She doesn’t want my attention away from her, even if it’s doing work on the computer. This is mind-blowing and super frustrating. I’m still trying to figure out how that’s going to play out.

I see so many families with autistic children who are able to manage these behaviors, or have their personalities figured out. I still can’t say that I have it completely figured out. Just when I think I do, she changes things. I completely ignore behaviors, and they get better or they get much worse. I’ll punish certain things and it gets better or completely worse. I try to change her ways and she just won’t. Points systems, charts, etc. and none of it every seems to work. She’s smart enough that she knows exactly what to do when, and how to get what she wants. It’s exhausting.

My plan over Spring break was to clean my house, and get organized. I have spent most of it letting Phoebe decide what we do, and let the other stuff go. I am just too exhausted to fight it. I’m embarrassed to say I took a lot of naps. I am trying to do errands and must-do things when she heads out with her caregivers. That way, I don’t need to be yelled at or feel like there is a ticking clock watching me. Until I find the right placement, I guess I’ll live with it being all about her.

The autism at our house is relentless. There are so many other things going on with Phoebe that it’s hard to tell which part of her is the hardest to deal with. She has an emotional impairment. What does that even mean? She can’t regulate emotions, but then sometimes, she can. Sometimes, she yells for no reason or throws something or hits someone. Sometimes, she doesn’t. She obviously has some kind of cognitive impairment. Her brain is like an 8-year-old, but yet she has a 22-year-old body. Even I, sometimes talk to her like she’s 22. This is not good. I know this. I have known this for as long as she has been alive. Yet, there are days I just don’t want it to be – and I let my guard down. I just want her to understand. I just want her to not be bribed in to cleaning her room, or behaving at school and not trying to get attention, or picking up her own pads, or washing or wiping herself. (Yes, I said pads- but they really are like pull-ups)

She has autism and/or PDD-NOS. (Pervasive Developmental Disorder – Not otherwise Specified) That’s a mouthful. This means she has developmental delay, language and social delay. This may or may not be the easiest part of her. Just about the time I think I have it figured out- she changes it up. She has anxiety disorder. Her anxiety takes up a lot of our time. She has what is called anticipatory anxiety. So, anything coming up that is mentioned in passing- she will obsess about. Today, she had it in her mind that her babysitter was going to take her. I knew this was not true. However, she had severe anxiety about what time, and when. Why wasn’t she texting? Why aren’t we going over there? This went on for nearly 8 hours. I must have received 60 texts from her iPad about it. Once we finally had it figured out that she was not going there…the anxiety about this week began. “When will I see her? Who will pick me up? What will we do?” I finally gave in and gave her medication to calm her. (Maybe I needed it?)

All of these disorders, syndromes, and anxieties are relentless. Her need for constant care are relentless. She needs someone. There are no days off. I know this. Some days, I just don’t want to. Some days, I just want to not have to deal with it.

As I have mentioned, looking for a home for Phoebe is in the works. Covid messes everything up, but I plan to get her in the right place. She would thrive with friends, and being social. I have made many calls and looked at many places. I have yet to find one that fits. It will happen, and when it does, we will all thrive. Until then…

Autism is relentless.

Lately, in our autism house, we live with Captain Obvious. At home, anxiety is high as big changes are happening with our family dynamic. Phoebe has become “Captain Obvious.” While driving, Phoebe states anything and everything she sees. For example, “That tree is green”, “That car has big tires.” Also, “You need to put on your turn signal.” I am not sure if this is a way of controlling her environment to make her anxiety less, or just because she wants to state the obvious. Either way, it’s all new to me.

I am used to her looking at me for social cues, but this is different. These aren’t things I would normally say to her, so is this progress? Should I look at this like she’s aware of new things? I am not sure, but I find it highly annoying. I know that sounds harsh, but I am also anxious with changes, and this new development has me a little on edge. The chatter is CONSTANT. Not only do I have a shadow, but now I have a talking shadow.

In addition, she has tons of anxiety. Brendan is off to college soon, and Phoebe can’t function if he’s out with friends, downstairs playing xbox, or working. She literally can’t. She is anxious about where he is and what he is doing. She is always questioning when he will be home, who he is with and what is happening. It’s trying on a person. I have been doing this for a long time, and I’m tired. (Let’s not even get in to the fact I can’t find anyone to be a caregiver to her). Dealing with someone else’s anxiety is exhausting. (REALLY EXHAUSTING) It truly is. I can’t even imagine what it will be like when he is isn’t living in this house.

There have been some big strides this summer too. Phoebe attended a respite camp for 2 days, and didn’t take any technology with her. She did very well, and the camp staff seemed to have no troubles with her. This is big! I got a short break, and was so excited she did well. This helps me set my mind at ease that Adult Foster Care will work for her, when we find the right house.

In the meantime, I will continue to look for the right house for her, and deal with her anxiety, and Captain Obviousness. Hoping to find something soon, so I can take time for myself and begin to live.

I’m sentimental. I am as sentimental as they come. I have boxes of scrapbooks from when I was a teenager. I keep photos, tickets, playbills, and anything that brings back a great memory. Recently, my 50-year-old brain can not handle as much stuff, so I am going through and getting rid of things that probably don’t need to stay. One of those boxes contained my sons k-12 school materials. Yep. I keep that stuff too. (I don’t keep every assignment and spelling test, only artwork, and special things). I painfully went through each item and got rid of things that didn’t need to stay. I cried through every moment. This post is to my son. I’m sorry I’m so sentimental.

To my son,

The time has come for you to go away to school, and start figuring out what kind of adult you are going to be. I don’t like it. You have always been my little shadow. I’m sentimental. When you drank your bottles, you would touch my hair and curl it between your fingers. It was our “moment” together. You didn’t like when Nana would feed you and her hair didn’t curl like mine.

I can remember dropping you off at your first day of preschool, and you banging on the windows, begging me not to leave you there. I cried all the way home. I’m sentimental. Your first day of Kindergarten, I left to go to a parent meeting in the gym, and you said, “I’m going with you.” I told you, you had to stay, and your face made me cry like a baby. (only after I left the gym area) In middle school, I took pictures at everything you did. The last day of Middle school, I jumped out to take your picture of you getting on the bus to Cedar Point, and you said, “MOM…please!!! No pictures.” I dropped you off and left with a few tears. I’m sentimental. In High School, you let me take lots of photos, and I lived through you. I took so many soccer pictures and got photos of every event I could. I don’t think you know that I have 20,000 photos on my computer. I’m so sentimental.

You have endured a lot as a kid. Being brother to a special needs sister is not easy. You listened to a lot of screaming, and a lot of things that were not “normal.” You would hide in your room and cry in the beginning. It broke my heart and I tried to protect you from that. Eventually, you got used to it, as best you could.

Now, you are a man (sort of). You are figuring out life and what you want. It’s time for you to go off and live. You have done amazing things, and there is more to come. Your whole family is proud of you for what you have done. Go do great things.

I’m sentimental.

I’ll stop crying now. (maybe)

In a month, my son will graduate high school. My younger child. How did that happen? He was the baby. Life has always been Phoebe, and her YOUNGER brother, Brendan. Phoebe has always had anxiety about her brother. The last few years have been, “When is Brendan coming home? What time is Brendan’s game? Where will Brendan be?” Let’s not even mention when his girlfriend comes over. She COUNTs the minutes until she leaves. Phoebe has gone to 100’s of soccer games, basketball games for her brothers friends, activities for his school, parties, etc. Her life has revolved around him in so many ways. She didn’t get to have that. She didn’t have a “normal” school experience. She didn’t have groups of friends. She lived through her brother.

Soon, all of that will change. This is the normal rite-of-passage, right? Usually, adult children, who turn 18, choose a career path after graduation. (That’s the hope anyway). Phoebe’s brother plans to attend college about 6 hours away. 6 hours. While none of us are really ready for this change, I worry about what it might do to Phoebe (and me). Her anxiety is already very high when big changes occur. Covid protocols for the last year only made that worse for us. While we did it, we had many appointments for med reviews, and mood issues. She won’t know where Brendan is, or what he is doing. She won’t have control. She won’t have all those games to watch, or his social life to keep her busy.

We face a new era of change. I am not sure how to approach it, and to be honest, it makes my low anxiety feel pretty high. I am so excited for his new path, and for his future, but can’t help but worry how all of this might affect Phoebe. Each stage of Phoebe’s life has brought about new challenges just like anyone else. However, she isn’t able to handle them, so I will. I will have to face all this change for her, and also be the mom who’s son is 6 hours away. I will take on all her emotions and figure out how to move forward. I will figure out how to make her new life a good one.

Let’s be honest…I’ll be taking on her emotions and crying on the side, as I watch him head off to college. It’s his time.

It’s the end of an era.

CLASS of 2021. How did that go so fast?