Basement apartment + puppy update

 Welcome Back Readers~

Wow, folks... I can't believe it's been over five months since I last posted on this blog.

But then again, I guess I can.

You'll be happy to know I'm finally living in the downstairs apartment; it is basically finished except for patching a few holes and creating a space for the elevator lift. I've already started putting up old pictures to make it more homey. Maybe one of these days I will decide to give you a YouTube tour once I figure click out out how I'm going to do. For now, this picture is going to have to do...

Let's see... What else? Oh yes, my adorable puppy Holly; although I don't know whether I can call her that anymore, she's getting so big. But she's still a handful. Don't get me wrong, having a pet is great especially with the pandemic going around. But Holly seems to think that since we don't go out much it should be all about her-all day every day. Still, she has quickly become an integral part of the family; my dad has quickly become Holly's favorite person.. Strangely, the feeling seems to be mutual..

With Covid, we had to postpone lot of our dog,'s regular activities such as training and grooming; as a result, she's developed some annoying and exhausting habits - everything ranging from playful nipping to jumping up on strangers. You can imagine our relief when Petco called to offer us one-on-one training since we hadn't attended the group sessions I already paid for. Anyway, we just finished Holly's second week. She's doing well but got a long way to go if we want her to to be an assistance dog- which  we do. Right now, we are focused on the basics of walking to the left of my wheelchair and distraction as well the basic commands like "come", "sit", and "stay".

A few weeks ago, Holly had her first grooming. Here is a "before" photo:

And the amazing transformation:

I know what you're thinking... It's not a different dog

On a more personal note, I kind of have switched gears when it comes to my writing. During my last post, I may have been preparing my first proposal to send off to a potential agent. Unfortunately, they passed. That being said, I was obviously disappointed; I haven't given up on finding an agent just concentrating on finishing my book. Although it would really be nice to have the person on my team besides my parents supporting and encouraging my passion for writing

Consumer Chaos: My Experience with Consumer- Directed Care So Far:

Dear Readers~

Happy New Year to my readers both new and old. As I'm writing this, I can hardly believe it's 2019. Where did the last year go? Although I have been really busy with my YouTube channel and getting consumer-directed care all squared away, my blog has kind of taken a backseat. In all honesty, I had no idea what I was getting into when I decided to embark on this new adventure of directing my own care.

True, I've had my share of ups and downs with agency-directed care- including those who could not understand English enough to take my direction and almost burnt the house down or those who just had their problems getting paid by the agency on a timely basis and therefore quit on me several times a month. You name it I've probably dealt with it. Still, agencies had their pick of personal assistance already vetted and could send them to me within a couple of weeks.

Now, I'm stuck doing the entire process on my own. Granted, I do have a consumer facilitator offering me suggestions on where to put my job openings out there, and he is great. One of the places to locate caregivers is mysupport.com. This site basically allows consumers to search for personal care assistants based on their needs and hours. But if I'm being honest it sometimes feels like I'm putting myself out there on a dating site; if it doesn't have enough bells and whistles on it, it doesn't get noticed. In the meantime, my dad and mom are the main caregivers and my dad has even gone so far as to be hired by me through a website so that I don't lose my hours through Medicaid. 

The problem is that the hiring process is so long and drawn out; it's difficult to have to mail papers back and forth to make sure my dad is vetted. I mean, he's my dad. I know him and trust him with my life!

I have even gone as far as putting my job openings on out-of-the-box websites such as care.com. The difficulty with these websites is that most people want more money for their time and it is not covered. I mean I don't blame them, taking care of a person with special needs is hard work and takes dedication. But paying out of pocket is difficult and not a good long-term solution.

Still, that's what I'm doing at the moment paying out-of-pocket for someone to come twice a week during the day. My parents need a break.

I pray as I continue along this journey that the right person comes along- someone who cares about people and who loves their job. I know God will put the right person in my life at the right time. In the meantime I remain patient, knowing that everyone who comes in contact with me does so for a reason- even if they don't know it.

I would appreciate all the prayers possible and positive vibes as I don't know what the new year will bring. But God does... And that's enough!

Debbie

PS. Feel free to share your personal care journey in the comments below. I would appreciate knowing I'm not alone in the process!

Easter

Okay,

So I have had a pretty busy week and a discouraging one at that. The process of finding the right personal assistant for me is taking way longer than I ever expected. We just can't seem to find people that could our needs; instead, we are expected to fit to the agency's. I may be completely off base here, but I think that's the wrong philosophy. After all, you're helping people and impacting their lives by caring for them. It's not about business, or at least it shouldn't be. These people are depending on you to live independently as well as becoming successful American citizens trying to make their way in the world. That's why I'm slightly disappointed with Virginia. I knew things would be different here, but I never imagined it would be this difficult. At least I have my parents I can depend on.. But, unfortunately, it won't always be that way. I'm 28, going on 29 (in two weeks) and can't help but wonder what the future holds for me.. Still, I guess I have to trust in God and his plans for the future. I don't know about you guys, but as I get older, I find this task increasingly difficult.

On another note, my therapy continues.. In the beginning, I was amazed by the progress I've made; but now I am not so sure. I'll admit part of it is because we still have to find the right hand splints for me to wear daily, so I'm not really seeing the whole impact. Sometimes I wonder though, why my life has to be this difficult. I mean, it's just another thing my parents and I have to do.. I wonder when it will be enough.

Anyway, in keeping with this theme, I would like to pose a question to my readers. How do you cope with your disability on your bad days? I would love to hear your opinions and thoughts. Until then, here's one man's take on "Making Every Day A Good Day". Feel free to take a look.

http://secondchancetolive.wordpress.com/2009/04/06/what-empowers-me-to-go-and-make-it-a-good-day-part-1/

Personal Assistant struggle

Okay,

So I know I'm running a little behind on my posts this week. It's hard to believe that it's been almost 4 weeks since I've moved out on my own. For as much as living on my own was a dream , I never imagined it being so difficult. I mean, I have dealt with personal assistants before. How hard can it be??

My answer: A lot different than you would expect.

If you have been with me long enough, you may remember me writing about my personal assistance experiences in college You can always go back and take a look if you're interested. Anyway, those experiences provided a spring board for where I am today. Even with my background, nothing could have prepared me for this experience living on my own.. I will try to examine some of these lessons briefly and explain their impact on my daily life.

1. The economic aspect- Being disabled, I have two options on how I can receive my personal care. One is through a personal care agency, the other depends on the person to hire and fire their own assistants. Both offer the same service, now only difference is the money. You see, hiring personal assistants on your own only allows you to pay the person minimum wage. That is, family independent agency only gives you a certain amount of money and you have to pay them directly. The pay is based on a personal evaluation of your needs. However, if you go through a agency, the wage is a little higher. Not only that, but agencies usually provide background checks for the people they send over. In my case, I am very lucky because I get to determine what they will do for me and whether I end up hiring them.

2. Watching out for the "motherly instinct" in personal assistants- This doesn't happen very often, but it's something to watch out for. Sometimes personal assistants see the disabled community as someone who can't think for themselves or simply think they know better!! This can be a very sticky situation. While it may be true that they are doing what they think is best for you, you have to remind them that you are an adult and their employer.

3. Independence versus dependence- Even though living on your own seems like it would bring a lot more independence, that is not all true. It depends on your disability and how much help you need on a daily basis

On My Own: Looking Back At My College Experience

Okay,

So it's hard to believe that almost two months have passed since I graduated. I think the realization finally hit me, looking at the paper as it lay in front of me on my tray. I have finally done it-completed another step on the road toward independence. This paper gave me all of the rights and responsibilities attributed with having a Bachelor of Arts in Communication; but in truth, that experience gave me a whole lot more than that. It gave me the world.

Of course, I had been through the college experience once before. After all, I had earned my associates degree while still living at home. But going away to college with a completely different story. Okay, so it wasn't "going away" to most people's standards; but it fit mine just fine. A small christian university not that far away from my home was a easy compromise for a woman looking to spread her wings. My parents wanted to make sure they could always be available if something were to happen. Looking back, I think that was one of the easiest decisions I've made. That is, compared to the ones I'm making now. In fact, I'm always afraid I'm making a wrong one lately. But more about that later. Maybe.

Yes, my parents would always be there. But the reality was, I was primarily on my own. I was responsible for the majority of decisions related to my college experience. I had to make sure that all my basic needs were taken care of with the help of personal assistants. These personal assistants came from one of two places. First, it came from a public agency which allowed me hire and fire my own personal assistants that they recommend. Second, during my college experience, I received funding from a variety of agencies which allowed me to hire and fire my own personal assistants privately. Many of these personal assistants were students themselves at the same school and in some cases the same dorm room. This allowed for flexible hours and times. Although the funding from these agencies made everything possible, there are often limitations put on the money. For example, the funding could be used for times where students can help me by organizing my notebook, helping me finish my homework (that is, the homework not adaptable to do by voice.)

As well as being financially responsible for myself, the college experience taught me the importance of patience and persistence on a daily basis. These are vital personality characteristics, especially considering my dependence on other people to succeed a college. Although I am pretty independent, the weather and other aspects sometimes limits my mobility. In those cases, I am dependent on other people to get me to and from classes. I have coordinate schedules and flexibility is often important. Even with the best of intentions, something might go wrong. Working with people made me realize this one simple fact.. Although working towards my independence, my independence depends on working successfully with people.

That's not to say that I haven't learned this from my past experiences, but this fact becomes obvious when you're living on your own 24/7. It's important to keep in everyone happy, realizing that your success is partially dependent on them working for you. On the one hand, remaining impartial may be helpful in some cases; it's vital to remember that personal assistants are people too with lives and people they care about. Yes, it's important that that the disabled client remains assertive on the job, so that the PCA (personal care assistant) know exactly what to do as well as personal expectations. That being said, a sense of understanding and trust is also important. And I'm not just talking about client to employer, but vice versa. As the client, you need to be approachable, someone making come to with scheduling problems and such. That way, the good ones feel as if they can come to you before they feel like they're getting "burned out". (That's personal assistant talk for getting tired, stressed out on the job) I would hate to lose someone, just because they were working too much and it was getting to them.

Living on your own or in any kind of dorm situation, people learn to expect the unexpected. Life doesn't always turn out as planned or have a happy ending. If I've learned anything from my experience at college, it's that life isn't perfect. Take for example, the onetime a PCA showed up drunk on campus to put me in bed. Luckily, my friends were around and she was escorted off campus immediately. Yes, stuff like that does happen in real life; it is an important to remain calm and collected during those situations, so you are able to think calmly and rationally.
Move down

That being said, I'm not suggesting that you should always be wary or trust someone automatically. More often than not, situations involve a PCA being a little late for work because because of traffic or the weather, leaving you to wait in bed a little longer. At least that was my case because of my disability.

Living on your own has its responsibilities, but it also provides its perks. It was living on my own that I begin to see the reality of my own life. A life that didn't always have to involve my parents, a life of my own. I was able to come and go as I pleased, (that is, if I had the van at my disposal), organize movie nights with friends and be a normal young woman. Although my parents would always be my primary support system, I began looking at my friends as another source of support. I began to depend on them more and more. Although sometimes I figured out new and different ways to deal with challenges on my own. Thinking outside the bubble when it came to asking for help and things like that.

As you can see, college left its imprint on the me. Not only of its educational challenges, but because it was also a growing experience.