autism

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.

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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.

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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?

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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.

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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.

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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)

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