It’s been a minute.

It’s been a minute since I’ve posted. There isn’t much to say other than we are dealing with a ton of emotions. (on all our parts). I’ve started the process of getting Phoebe in an AFC, but not too sure about any of it. I’m trying a different approach of easing her in to it. Will it work better? Maybe. Will she like it? Maybe. There really is no answer.

Phoebe is twenty-six. For twenty-six years, I have been doing meetings, appointments, transitions, medication changes, more appointments, etc. They all seem different, but much the same. This year, I took a huge leap and settled her in to a situation that didn’t work. We gave it our best, and had to move on. Now, she is back with my mom and me. This was always going to be a temporary solution, but the time is slowly dragging on. I searched for a while and found a local AFC, that seems to be a great place. Is it perfect? Nope. Will I ever find the perfect spot? Maybe. Is there a lot out there for adults with intellectual disabilities, autism, and emotional impairments? Around here, there is not. I have to be ok with what there is and do what I can. Doing weekly research on facilities and programs is an exhausting 24/7. For the last 15 years, the meetings have not changed. The ideas have not changed. Phoebe has not changed. The only thing that has changed is me. I’m not surprised by anything anymore. I keep thinking I know what will work, and then she slaps me back in to reality.

It’s been a minute since I’ve posted. Things are different but much the same. The only change is I’m getting older and need to find the best solution sooner than later.

0 Comments Leave a comment

A step back

So, we’ve had to take a step back. Phoebe’s situation at her new home did not work out. Her behaviors and anxiety got the best of her, and we found ourselves back at home. I’ve struggled with how to write this and not blame myself. In the matter of a few weeks, I decided to move her, move myself and she graduated from her post-secondary program. This was ultimately a bad decision. Too many changes, and I should have known better. My philosophy was that it was better to do it all at once and rip that band-aid. Well, that backfired.

I take all the blame on this one. Phoebe became aggressive, and unpredictable when she couldn’t control her environment. I had almost forgotten what that Phoebe was like. Not sleeping, aggressions, blurting and repeating, over eating, etc. She didn’t have many full-blown meltdowns anymore at home, as I ultra structured her world around her. I almost forgot. Almost.

I ended up doing more work than I did when I was at home, and that obviously was not the goal. Her independence was the goal. It just didn’t work. While I am sad, angry and literally so exhausted, I’m also aware of how Phoebe feels. She can’t help that it didn’t work. She can’t help who she is, and how she feels and reacts. (Mostly). I also can’t wrap my head around why I can’t help her more. It’s a vicious circle.

For now, she lives with me but I am actively seeking a better situation for her (and for me). Something that will meet her needs. This is all we want.

Phoebe would like her independence, and so would I.

0 Comments Leave a comment

Who am I?

For 26 years, I have been the primary caregiver to my daughter. Some kids hang around home for a while. However, most of them don’t require the same amount of care that mine did. While it wasn’t always super hard, most of it was. Navigating her education and health took up a majority of her young life, but that was only a small part. Living with someone who is cognitively low, behaviorally challenging, and can’t take care of their general needs is exhausting. It’s also very time consuming. Someone has to be taking care of her at all times. There is no “down-time”, unless someone else has her. Recently, big changes have been made.

Phoebe and a friend moved in to a home with various caregivers. These caregivers are saints. They are enduring the behaviors, and the ups and the downs of it all. All the things her friend’s mom and I have done for so long. The friend’s mom manages schedule of caregivers, and we are constantly talking and rearranging things. Both girls need care 24/7. We know there are going to be bumps in the road, and eventually things may (or may not) get easier. We both see the girls often and do what we can to make the transition smooth. I worry constantly about her and her life.

As for me, I have been wondering what to do with my life. For the last 26 years, I have been this person, and now I am someone else. I will always be caring for her and navigating, but the 24/7 is gone. Someone once told my mom, “It’s like the anchor is gone that kept you in one place. Without the anchor, you’re just swimming around aimlessly.” My daily life has completely changed, and I don’t even know what to do. I haven’t played a sport, or done much exercise. I don’t have any hobbies like gardening, art (outside of school), reading, or any great passions.

This new era is hard when you’re 54 years old. Yes, 54. One day I was 35, and the next day I’m 54. My adult life has been all about her and her life. What can I do to make her life better? How do I make sure she’s alright and happy? Now, I think I’ve got her there…what about me? This new part of my life is weird. I’m not sure what I like or what to even talk about??? I guess I need to start this process and figure these things out.

Writing? Art? Traveling?

Who Am I?

0 Comments Leave a comment

Phoebe and ASD

This week has been interesting in the news world. I have been trying to put in to words how comments by RFK, Jr. made me feel. Autism is something that affects 1 in 31 children in the United States. Calling autism a preventable disease is an interesting thought. I would love more research, and help for families with children on the spectrum. If we are going to prevent autism, don’t we need to know how it is caused in the first place? I don’t discount that environmental things can add to it, but I don’t think it’s a simple answer. I’m going to leave that up to the scientist/epidemiologists, pediatricians, geneticists, etc.

How his comments made me feel is a different story. Phoebe did not destroy my family. Has it been hard to raise her? Yes. Has every doctor’s appointment, IEP, meltdown, anxiety ridden behavior, and various other autism-ish things been hard on me? Sure has. My family has been through it with me, and none of it is easy. As she winds down on the last year of schooling, I can’t help but think how far she’s come. This new chapter will be hard too, but we have put in to place some strategies that seem to help. This is where Phoebe has taught us some things about people who are developmentally disabled, on the Autism Spectrum, or have any disability for that matter.

Phoebe has taught me how to be empathetic to other children and adults who don’t fit the societal norms. (Ok- I did already do that, but it got better with having her). She taught me that developmental milestones didn’t mean much, because she did them on her own timeline. (She didn’t end up scooting on her butt forever). Phoebe has also taught me that just because one way of learning works for most people, doesn’t mean it works for everyone. Her schooling path has been a creative one for sure. I have learned how to be a better teacher to students on the spectrum because of her. Phoebe taught us what it meant to have sensory issues when she didn’t like to be touched, or have her hair or teeth brushed. We also learned that large crowds can send someone with sensory issues in to a meltdown when their system has had enough. She taught us that a schedule helped in so many ways to alleviate anxiety, which helped me too. She also taught me that being on medication for preventable things like anxiety, mood, and weight is ok. Phoebe’s brother also learned so much from having a sibling with autism and other impairments. He has always been very patient and kind with her, and that has carried over to his adult life in every way. What she has taught us is endless.

Phoebe may not pay taxes, hold a steady job, or be fully able to use the bathroom correctly, but her life has had great meaning to me, and those around her. She will continue to change how we think, and do things the “Phoebe” way.

She did not destroy our family. She taught us that being different doesn’t mean less. It means different.

0 Comments Leave a comment

A new chapter

We have started a new chapter in getting Phoebe a home of her own. Getting Phoebe placed has been the goal the last few years, but finding what will truly work has been tricky. In our small town, the Adult Foster Care availability is not great. I have some requirements, and I am going to make sure those things happen. In a turn of events, Phoebe and a friend will live in a home and we will staff this home ourselves through Community Mental Health hours. To say this is a process is an understatement. This process started last winter, and now we are working towards a home in early February. This means staffing and such has to be set. Finding good staff, and people who actually want to work with special needs adults is not easy. The other not-so-easy part is dealing with who will pay for what. We have a wonderful caseworker, and I am thankful that she understands what we want, and what we need for this to work. She’s creative and helpful. (but that doesn’t mean they will pay for it).

Phoebe knows this change is coming, but doesn’t truly understand. Her behaviors are all over the place, and she’s undone by the thought. She claims she’s excited, but I know she isn’t sure about living in a new house. She’s a social being, and loves to be with friends and staff. She wants constant attention and hopefully this set up can cater to some of that. She will have daily activities for the school year and then other fun things during the summer. (Camps, daycare, etc!).

Her uncontrollable sensory eating will be the biggest challenge in a home of her own, as someone has to constantly monitor. This type of monitoring is not something you can let up on, or she can end up in a very serious health situation. Believe me, I am not perfect, and I give in to her wants because it’s just easier than the alternative. But, I work hard to make it happen about 90% of the time. When she is told no, things escalate and it’s going to be hard for everyone.

I’m pushing through some of the regression of behaviors because I know what’s driving them. I’m keeping as positive as I can around her so that she knows this is the best thing. It’s hard when someone is verbally abusing you most of the days and nights. Her not being able to discern between positive and negative makes it very trying. I keep saying how fun it’s going to be, knowing I’ll be exhausted for a while. (How is that any different than it is now??)

Phoebe is 25-years-old. This fall I had Phoebe’s final IEP. Twenty years of Individualized Education Planning meetings. Sometimes there were multiple meetings per year to discuss behaviors, and placements in over 5 different programs and 9 schools (I think?). Meetings with mega-tears from me, and then meetings where I demanded better. Twenty-five years of navigating special needs and it’s time for someone else to help. I’m here for the big things and the normal mom/caregiver things, but I need a break.

I’m excited for this new chapter and hoping to see her thrive.

Phoebe is 25-years-old. Twenty-five years of navigating special needs.

0 Comments Leave a comment

Firsts

Today, I took my 25-year-old adult daughter to the OB-GYNS office. I had been dreading this moment for the last 15 years. While nothing major happened, it’s just another thing in a long line of “firsts.” Think how you’d feel taking your daughter with the mental capacity of an 8-year-old to an OB-GYN. Not something that sounds fun. However, we saw a lovely nurse practitioner and started a path of what to do for birth control that will best meet the needs of Phoebe. The last year has been all about getting a life situated for her, so that someone else can handle what she needs. A life that would go on without me being by her side all the time. This is the beginning.

Trust me when I say, I have avoided doing any of these because of the stress it causes Phoebe and I. We have had no less than 15 appointments in the last 6 months. I have advocated for weight loss medication, PCOS testing, bloodwork, med changes, and working on a nutritionist as we speak. Anything out of her typical day and she is undone. Over the years, I have learned how to get her ready, but there is always that sense of “anything can and will happen” while we are there. Today, she did fairly well and I was proud of how far she has come at these unknowns. The only time I really laughed was when Phoebe asked the nurse when her brother needed to come to the OB, and she said, “Never, because boys don’t have babies.” Phoebe said, “Yeah, that’s not fair.”

I’m not going to lie…being 53, and trying to manage all this is not easy. Menopause fog is a real thing, and I have never made so many lists in my whole life. Thank goodness I have the summer off, because I can’t do much else when I’m teaching art. The struggle is real. My brain and mouth are on 2 separate planets, and can’t seem to get their shit together.

This next year there I’m hoping there will be many more “firsts” for both Phoebe and I. She deserves a life of her own, and getting to do the things she loves. I’m also looking forward to discovering what my life should look like, and maybe having a few moments of down time. Whatever that is.

For now, I have to go make a list of what to do next.

0 Comments Leave a comment

Autism Awareness and Acceptance

Our house understands Phoebe’s autism. We understand about her impairments, delays, anxieties, food issues, meds, teeth issues, and many other things. I live with these daily, and sometimes I forget I even handle these. It’s routine for me, and I add it in to my daily life. I accept these things even when difficult.

Another thing that I have found, is that Phoebe understands a lot of her disability. She knows she’s different than other adults who are 25. She knows she can’t drive, go to college, hold down a job, or date. She knows she needs adults to help her and there are times she uses this to her advantage, but we work hard on independence. She uses language and makes us think she can do a lot more. She can say so many things that sound like a typical young adult, but what she understands is questionable. Phoebe even tries to add in to conversations, but usually it’s not appropriate or related. I understand her epic meltdowns even though they are the most difficult thing ever. I have learned this part of her autism. My family sees it and understands it. Not everyone does. She will talk to nearly anyone when we are out in public, but often times we get strange looks. It’s disheartening. We are always looking to find her friends and outings where she is accepted.

That brings me to a community of adults with disabilities. Phoebe has many friends with a variety of impairments. Phoebe goes to a daycare for special needs, and has many friends with disabilities. Phoebe attends a local camp for adults with disabilities, and absolutely loves it. She is definitely in her element. I have watched as she loves to be with people who are most like her. Last week, Phoebe was in the Special Olympics. She has been going for years, and she is truly the QUEEN of the games. She knows and talks to everyone (and they know her). I had the pleasure of taking her to the “A Night to Shine” prom a few months back (Tim Tebow’s event) and I witnessed this myself. She truly loves her friends and it was so nice to see her have a good time, and be spoiled by this local/national night. I wasn’t even allowed to sit near her. She wanted me far away from her so she could have her fun. All of the people who run these organizations and companies understand the idea of acceptance. They get that everyone just wants friends and fun. We need more of this.

During this month of Autism Awareness, I’d like to thank these places. Thank you for accepting my girl for all her differences. Thank you for guiding her, laughing with her, making her accountable, and even taking her on weekends, and daily outings. Thank you to my family for accepting it. It hasn’t been easy.

I can’t expect everyone to get it, but you all sure do.

0 Comments Leave a comment

Jealousy and understanding

I’m jealous. I’m jealous that most adults my age can go have drinks, dinner, movies, or whatever sounds good at that very moment. I’m jealous that most adults who are over 50 can think a lot about what they want for their future, and can see how that looks. (and yes, I know this isn’t true of everyone). I’m jealous of caregivers that have more than one person that cares for their dependent. I’m jealous that projects don’t usually take 6-8 months because you can work on them whenever, and don’t have to stop to help your dependent, or to watch your girl so she doesn’t eat everything in the pantry. I’m jealous of those people that aren’t utterly exhausted by the end of the week because they are doing a million jobs at once.

This all sounds very selfish, I’m sure. However, this is where my brain goes when I’m mentally and physically exhausted. I have to tell myself, “I think it’s ok for me to feel this way right?” For close to 25 years, I have been doing this. I’d say about 98% of the time it’s hard. The other 2% of the time, I get short breaks and find solace in Respite camps, and trips (while another caregiver takes care of her). When I was 35, 40, and even 45 I found it to be much easier. At 53, managing menopause and caregiving is very difficult. I’m clumsy, sweaty, angry and exhausted.

That all being said, I have to remember that my daughter can’t help who she is. She can’t help it. She can’t help that her anxiety rules most of her behaviors, and that she wants attention all the time. She can’t help that she wants to eat 24/7, and that she has sensory issues. She also can’t help her social awkwardness and her ability to be so inappropriate. Recently, she told me, “No one wants me.” It broke me. I had to take a step back and realize that her happiness matters too. I have to remember that she isn’t going to change. The change has to be from me. My menopause has to take a step back and be a little more patient. Each weekend for the last few months, I have done what she wanted to do and realized this is who she is…forever. Projects have to wait, or she has to be included. I am working to be better at understanding.

I’m still jealous of those things from time to time, but I remember that she needs me. I am her only constant, and she deserves love and understanding. Eventually, the right place will become available and although she will still need me, I will be able to do all those things. (Sooner than later)

0 Comments Leave a comment

Caregiving

Being a caregiver is lonely. I have spent the better part of 24 years taking care of my daughter. While at times it was more parenting than caregiving, inevitably it has taken on the latter. Most of my friends were parenting when I was. Through those toddler, pre-teen, and even teen years, we all had similar things going on. We had the same events, the same plans, the same basic lives. Even as a single parent, we had our sitters when needed, and made our plans when we could get away. As parents, we know this will happen, and we work to find time for ourselves, friendships and love. This time in my life has passed.

My youngest child is now 21, and he has moved out and attends college. He doesn’t have any plans to move back, and I don’t really blame him. He’s living his best life, and I can pat myself on the back for getting him there. Phoebe is my oldest, and for the last 3 years I have been her constant caregiver. Once my son moved out, it was just she and I. I didn’t plan on being a caregiver. It might be for some people, but for me it’s very difficult. I didn’t realize how time consuming this life was going to be. For comparison, it’s like I have a toddler with me 24/7. She may look 24, but her mind is very young, and her needs are even greater. I’d like to mention that she has made great strides. We (her school team and I) work hard to make her more independent. She does surprise us, and she does try, but if you aren’t on all the time, she regresses and takes advantage. Like a toddler, she is a master manipulator, and she knows when I’m tired and can get away with things.

In a time when it should be easy to go to dinner with friends, get away for weekends, and go get a drink, it truly is still a chore. I’m still parenting. I still have to find someone to take care of Phoebe and sometimes that just isn’t possible in the last moment. Plans have to be made, and when you are 53 it should be way easier. When she’s sick, I can’t just leave her here alone, I have to find care. I have a few people who can watch Phoebe, but even they need more time. It’s just never that simple. Life gets lonely. I don’t blame people for not wanting to ask, it’s a pain to wait for an answer from me and they all know that I need time to get it organized.

Until I find suitable housing and caregiving, this is going to be my life and I don’t see it getting any easier. At 26 years old, Phoebe will phase out of her program and we will have to find some other kind of day program for her to attend. This is going to be difficult for both of us. I’m hoping we will have found some kind of housing for her by then.

I’m sure there are many families out there dealing with the same thing. This isn’t easy as I am doing it by myself and there are limited resources here. For now, I’ll plug along and keep looking.

0 Comments Leave a comment

Mother’s Day

Mother’s Day with an adult child with autism is different. When the attention is focused on someone else, Phoebe’s autism/emotional impairment does NOT do well. I had no plans to make anything about me this weekend. From the moment I woke up today, she was undone. That’s all I can describe it as. Anxiety hit hard from the moment her feet hit the floor. Phoebe waits for me to get up, and is not quiet about that. She watches her shows, or asks 100 questions while my eyes are still closed. Today, it was more like 200. “Should I let the dog out?” “Is Brendan in his room?” “Should I take a bath, or should I get my food?” “Do you want to go to Target?” “Should I unlock the fridge?” “What are our plans for today? I finally roll out of bed around 8. Last night, I fell asleep on the couch at 8:00 p.m. when she went to bed, and woke up at 10:30 p.m. I immediately went back to bed. I finally felt a little rested. That did not last long.

I got out of bed, and sat to have my protein shake and coffee (which she insisted on getting). This was not a nice gesture, but a way to get me to shower faster due to anxiety. She immediately grunts and asking how long I planned to sit. This is not a question I answer, or I am stuck to listening to her ask how much longer. The screaming then starts, because why not wake up her brother to get him involved. Thankfully, he sleeps like a rock. That stops when I tell her no going out until she sleeps more and stops screaming. She heads to her room PISSED off. “My mom is the worst.” If I had a device that counted words, it would have said 20,000 before 8:30 a.m.

Finally, she falls back asleep and I sip my coffee slowly and relax. About an hour later she rises and is mad again because I have not yet showered. She says, “let’s go Mom,” I’m caffeinated enough to get the day started. We head to drop off some donations, and get my Mother’s Day coffee. That’s another anxiety as the line is too long, and we MUST come back or she loses her shit. We head to get some scripts, which takes altogether way too long for her and she yells through the window. I’m menopausal, and super pissed off at this point and would like her to walk home. I finally get my coffee, and that’s the end of the errands for today. That’s upsetting to her and she claims I hate her because she couldn’t get water at Starbucks.

The afternoon is spent cleaning the garage with my son, who is a huge help. Phoebe does not like that he gets attention and comes out to cause chaos. She dumps out garbage, throws things in the yard, and tells us we are stupid. She finally goes inside to watch baseball for a while. I then get screamed at because Brendan gets to go get his own lunch and run a few errands. “Why does HE get to leave??” My answer is not nice. “Because he can.”

For dinner, I decide I want Chinese food. This is my Mother’s Day wish. Well, that didn’t sit well with her and she throws a fit and says I’m a stupid mom for wanting that. I give her all her meds early, as I hope she will go to bed soon.

I should probably ignore these behaviors, but when they happen all day everyday, it’s very difficult. I should probably never give in, but we know how that goes. I should probably never take her anywhere again, but then I would be stuck at home as well. I should get more time alone and out, but for the last 24 years, I have been getting babysitters and sometimes I just don’t want to think about it. I should find her a home that will work for her. Yes, I should and I will. I also should probably be more sympathetic to her issues, but I’m 52, menopausal and tired (and slightly cranky). Being a caregiver and a mom is a 24/7 job, but it’s the caregiver part that’s the hardest.

Tomorrow, I will celebrate my own mom. That’s all I wish for. She’s a super supported and is the only one who truly gets it. She helps all the time, and gives me breaks when they are necessary. Thanks mom!

I will also celebrate the other moms in my family that are super women.

I should probably NOT tell Phoebe this.

0 Comments Leave a comment