Standing In The SUn


Hello friends and family. It’s been a little over a month since the last time I was able to write anything. I apologize as life has been super busy and chaotic, not with Angela. Life with her has become more and more amazing.In fact, I should make mention that we very seldom use the word Special Needs when introducing Angela. The reason? We felt like we were still labeling her some sort of barrier in life, when in fact she has no barriers. We figured that the more we kept on calling her special needs, that she would feel a restriction on life of some sorts. You see, she has the thing where she would (and still does) introduce herself as this, “Hi! I his mentally handicapped sister, Angela!” Now have not ever introduced her like that, but she has been in the past. Again, not by us. She has the label stuck in her head…so she feels that she can either use it to her advantage or use it as a form of restricting herself from doing something. We’ve really been working very eagerly on this aspect, as we don’t want her to feel as she is mentally handicapped, or mentally retarded…as she politely likes to tell people that she is sometimes.

We’ve had Angela for a little over a year now, and the strides we have made with her are simply amazing. We still have some bumps in the road that happen, but we stand in amazement of how well things get handled and how the intensity, duration, and frequency of her outbursts will last. However, that is just the tip of the iceberg for us. It’s taken a lot of work and a whole lot of love, but here are some of things we’ve been able to accomplish:

Her hoarding:

She used to hoard things like crazy when we first got her. In fact, she used to have about 100 different plastic bags with all of her things organized them. She would organize and put her belongings (clothes, shoes, toys, crayons, etc.) into plastic shopping bags and tie them into a 1,001 knots…and then place them around her. We really wanted to try to figure out her fascination with bags and keeping every single thing she came upon. It didn’t matter what the item was, it could be the wrapping of a piece of candy…she would keep it. She would go into the kitchen trash can, and pull things out (mostly recyclable products). She would then put them in plastic bags and wrap them up and place them with everything else she had: stored away and organized in her OCD fashion. In the end, we’ve realized that this is a coping mechanism of hers. This is how she has come to learn to protect her belongings. Her hoarding other items, items that would make no sense for us to keep, comes to a point of finding some sort of value in items that she would not normally have or be able to keep. She’s used to living around a LOT of kids in a house. With a lot of kids in a house, comes damage to personal items and items are taken and accidentally destroyed. So, this was a way for her to keep her things safe. She made sure that the kids would have to work to get her items. If they did break or destroy her things and they were thrown in the trash, she would wait for everyone to go to sleep…and then use her ninja like stealth qualities to dig through the trash to grab any pieces of her things to keep and try to put back together.

Yes, we have found food products in her plastic bags. She lived with about 11 people in a house, including herself. She was in survival mode to make sure she was able to eat when she wanted to eat…or just be able to eat. Food was basically a luxury item. A scarce product. This was a very tough subject to approach. Yes, it’s going to break your heart…but she did dig through the trash to see if there was any extra food left in there to eat. She didn’t have any cognizant ability to understand that trash was trash. I still remember a story that my other sister told me on how she found a half eaten package of raw chicken next to her bed. Angela had gotten up in the middle of the night and was hungry…and ate it…raw. She didn’t understand that it was food for everyone. She was in survival mode and her body told her to eat…you’re hungry.

Were we able to break that habit? Yes we were! For the first 10ish months, we had to lock down the kitchen. She would break into it and start grabbing food, and then hide it and hoard it. We had to make her feel comfortable enough and to constantly remind her that there is plenty of food…and that there will always be food available for her to eat. We had to constantly remind her that it’s food for everyone and not just for her. If we don’t have something to snack on it, we can easily get more food. For the last 1 1/2 months….we’ve not had to lock up the kitchen with chairs, household items, and strings with bells on it. Believe it or not, we actually had these little door alarms on the fridge and other items to go off when she would decide to start digging through everything. It’s all stopped. We are able to breathe, as it was just a nightly routine that we did…every single day.

Her Meltdowns:

Her last emotional meltdown came about a little under a month ago. It was a pretty bad one; however, the last one before that was in February-March timeframe. Though, even then it really wasn’t that bad at all in considering all of the past ones we’ve been through. We now all of the tell-tale signs of what to look for in her mood changes and in the way she starts interacting with things and levels of her frustration in working on all of her coloring projects. We really had to dissect every single thing about her that we could. Including in how long she would shower, where she slept (on the couch in her room, or on her amazing new expensive bed that we want to snatch up and sleep on lol), the small actions of her eyes, hand movements, certain words she uses, body language, topics of conversation, and the list goes on and on. Stephen and I can only help her if we truly understand what sets her off. We used to get emotionally involved. The worse thing of her meltdowns is her language. Her words can take you from 0 mph to 100 mph in less than 3 seconds. You have to show the most restraint that you could possibly muster up. We had a friend over one day, and Angela went into full melt down mode. This was something that happened the last time a few months back. We were totally not expecting it. Normally, we can get her downstairs to her room before it happens. This time, we had to go in full “protect Angela and protect ourselves mode”. She kicks, screams, hits (slaps and punches), bites, and bangs her head onto everything. Yes, we felt totally bad that it happened in front of our friend…we were red with embarrassment of what was happening, but we couldn’t worry about it at the same time. We had to grab pillows to protect her head, and had to start restraining her and holding her down. I’m sure the scene is like that from a horror movie. However, our friend knows Angela well…and normally Angela wouldn’t react this way in front of anyone. Though, she loves our friend like family…so in Angela’s brain…she felt that it was okay to break down like this.

Today…in the present moment…her moments are now nothing to us. The intensity isn’t there. We’ve learned how to say the right things, do the right things, and ignore a lot of things. It’s hard…but ignoring her verbal portion helps stop any physical portion from happening. We do a lot of reminders that her words and actions have consequences. In fact, during her last melt down….she told us to throw all of her things away. She didn’t want them. We asked her if she was sure…and we recorded it with her saying it. We do record things so we can always show her that it wasn’t our decision, but hers. Did we throw her things away? No…in fact, they are still in the trunk of my car. With the advice of an amazing friend, Lisa, we did make Angela do something. We made her put everything into trash bags…not us. We had her go through the motions of physically putting them into trash bags because it wasn’t our decision to do it…it was hers. She did it….and a few days later she cried and got upset how she put everything in the trash. However, we had to make the tough decision to not give her things back…to help understand the pros and cons in life that comes with making decisions. Are we going to give her the stuff back? Of course, we’re just trying to find the right time. At the moment, it is still too soon. She’s currently “earning” surprises (crayons, coloring books, new clothes, etc.) from showing amazing behavior and making correct decisions. She’s finally learned to become more independent in her thinking and actions. Her mouth and choice of words are getting better, but that’s still a work in progress that is getting better.

Her Being an Independent Person:

This was another tough one. It’s also something that I unknowingly added to. If she wanted a glass of water, I went got it for her. When she was done with her meals, I would take her plate away and place in the sink and throw her napkins away. Whatever she wanted or needed, I was the one to do it for her. So I was really just encouraging the behavior and keeping her in the mindset of her being “special needs” and “mentally handicapped.” I’ve stopped this. I let her go and get her beverages, get her hair brush, pick out her own clothes, put her own things in the trash, and anything else we can think of that she can do without creating any type of mess that we didn’t want to deal with. However, if she does make a mess…we allow her to clean it up…instead of us always having to clean it up.

We also take our to places all of the time now. We now understand that if she’s going to talk to anyone…she’s gonna talk. 99% of the time, people respond very positively and talk back with her. Some ignore her…and that’s fine. We don’t let it bother us at all. We come up with small excuses of why they didn’t say hi back. The thing is, Angela is a very big force in life…and is a lot to take in. She’s very much in your face, and makes no excuses. She doesn’t understand personal space, and that’s something that we might not be able to break through to her about at the moment. Honestly, it’s really not one of our biggest concerns on the list of things that Angela does. She is a strong force to be reckoned with, and really just has a lot of love for everyone. Hugs and love for everyone, and that is no exaggeration at all.

When we do take her to different social outings, we just let her be her…and so does everyone else. This is one of the many reasons why love our friends so very much. They understand her, and they just let her be her. They know the signs of what to look for, how to talk to her and treat her, and how to react to certain topics of conversations. They are really amazing, and we really are truly blessed to have them in our lives…all three of our lives. She has truly blossomed into a wonderful woman. She is turning into an Angela that she really wants to be that has always been there…she just needed some encouragement and love to bring her to the surface.

In the end, life is pretty beautiful. Life has become better, and Angela is becoming a woman. Yes, she loves wearing her dresses, skirts, jewelry, doing her own hair, shaving (God still help me on this topic!), and being her own person. Yes, she’s still a child. She will always be a child, however, her adult “I am a woman” personification is getting stronger. Her self identity is growing, and that’s all we can ever really ask for.

Thank you all so much for your constant love and support, the little letters you send to her, the packages, the Facebook comments. I read them to her and show her everything. The have only helped her become a person she truly aspires to be: A person that is loved and not forgotten about. So yes…you truly bless us all. We love you.

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