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Rubiegem8280 -

City: Brunswick
State: Maine
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Member since: Jun 20, 2008
Last logged in: Dec 02, 2008

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Mother, Occupational Therapy, Speech Therapy, Self-Stimulatory Behaviors, Toe-walking, Anxiety

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Rubiegem8280's Bio

In this space, share about yourself, your family, your job, your passions.... whatever you care to reveal, it's up to you. And you can change it or update it as often as you would like.

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Rubiegem8280's Blogs

My Life

by Rubiegem8280 on 10/27/2008

Everyone knows my daughter, Haley, is on the spectrum, but what most people do not know is that our family struggles daily to just keep afloat. Two ye...

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Everyone knows my daughter, Haley, is on the spectrum, but what most people do not know is that our family struggles daily to just keep afloat. Two years ago I started having pain after working at my first real job since college for only 2 months. That pain grew and spread and more problems arose, and I fought with all I have to make sure she stayed the focus. Friday I recieved a letter from Social Security (after filing 15 months ago for myself) saying that they had determined I too was disabled. That struck me in so many ways. Great, no more state help cause we will both be on SSI..... but more than that it was a confirmation that I am infact disabled. That the jobs out there fashioned to suit my limitations are next to nihl. And the work I picked up to do at home, well... long story short may be a huge mistake health wise.  I have been worse this past week than ever in my life. That letter was almost permission to give up. And I hate the idea, but am struggling soo hard and getting no where that it almost seems necessary. Maybe the 8 or so appointments between us per week is enough work. Maybe using every ounce I have in energy to attempt keeping up with Haley is more than enough work. As a single mother, I believed I have to work to make our family work. As a person in daily pain and additional laments, I just want to stay home and hug my daughter, between rampages, as cleaning up after her is all I can seem to handle anymore. And yet, not working I feel so unfulfilled, bored, and depressed. Its a huge catch 22 in my life and I have no idea where to look.

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awareness

by Rubiegem8280 on 09/16/2008

I have been searching for Autism awareness jewelry everywhere. Some cute stuff out there but mostly cheap or chinsy. The cute stuff was way overpriced...

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To Weight or not to Wait?

by Rubiegem8280 on 09/07/2008

So I have been shopping... a lot...... I am trying to find patterns, inexpensive ready made, or suggestions for a toddler sized weighted vest and a tw...

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So I have been shopping... a lot...... I am trying to find patterns, inexpensive ready made, or suggestions for a toddler sized weighted vest and a twin sized (and throw sized) weighted blanket. (suggestios and directions very welcome!!) I know how much weight to use, I know what materials are deemed safe for very young chewers... but I can't find the blanket, pattern, or seller thats reasonable. What is with this? Why does it cost $150 or more for a blanket for a "differently abled" kid? Why would a vest be nearly as expensive? And talk about ugly!! So I gave in.... I am making a weighted blanket using a Navy surplus wool blanket ($20) with a cotten quilted top (free from a catalouge order I made a while back) and a super soft (I-don't-know-what-it's-called) baby blanket material on the other side. Haley picked it out herself at Joann's today (thank goodness for sales cause that alone was as much ($23) as a ready made blanket at TJ Maxx, which she didn't like and had to be returned though I would have adored it!). Then came the vest. I broke down and bought a pattern for a normal vest, kinda trendy and cute but not really practicle, though the only one I could find under 10$. The pockets we will have to wing it. The material for it: two ultra cute and soft corderouy fabrics also on sale at Joanns (will think of a summer weight one later). Then comes the weight for this pretty little project. NO ONE carries poly weight pellets. I had to order them online from an ebay doll dealer to get the best deals. Everyone else wanted about $6 for a little less than a pound of weight. I got 10# for 19.99 (with the shipping). Now there is enough to make more than one vest or add to it as she grows..... Speaking of.... she was 37.5 inches the beginning of the year and 39 yesterday! She will be outgrowing these things so fast our heads and bank accounts will hurt! On the up side.... I found the chewlery online decently priced and ordered her one to help save her clothes and shoes, and toys and fingers..... you get the drift. The chew tube wasn't a big hit, but I hope this goes more her style. On the topic of chewing.... she bit her finger a little while back, left a white half circle growing out by the base... appears this afternoon that she will lose that nail, and I do not see one coming in behind it. Anyone had this issue and know if she will grow another one in or should it be checked? We already had to take her this week for weird tummy troubles. Soo enough rambling for one night I think....

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Ice Cream

by Rubiegem8280 on 07/22/2008

My daughter has a special place in her heart for Ice Cream. I understand this and sometimes even indulge it. Especially with a rough day. We had one o...

Signing

by Rubiegem8280 on 07/21/2008

So I have been signing with my daughter since a couple months old. Before her illness that I believe led to the diagnosis, she was signing a lot back....

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The Wonderful World of Swim Lessons take 3

by Rubiegem8280 on 07/21/2008

I think I mentioned having health issues of my own in the past, so I will just say that this week I have been dealing with a morton's neuroms in my le...

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I think I mentioned having health issues of my own in the past, so I will just say that this week I have been dealing with a morton's neuroms in my left foot (think thickened nerve with burning and swelling) and have barely been able to walk. So my mom said she would come help with the lesson this week. Yay!
Haley was great. She got dressed easily, only fussed a second as I put in her earplugs and waited for us to be ready too. We were able to get right in and I started in thinking maybe mom would just hand her off to me, but the teacher told her to get right in, besides Haley was already half way down the steps and up to her chest. So we all did the lesson together! I was shocked. Haley got in the pool pulling us behind her and immediately wanted to go all over the places barely enabling us to hold on. 
This lesson included some time with the swim bubbles and letting go of her to get her used to doing it alone. She never even noticed. Grated she kept drinking the water, but she had a ball pushing us away and then grabbing our fingers! She even interacted with the other kids (sorta) playing ball. (more like pushing it back to the teacher but it wasn't straight so the kids got it and she watched them) She loved it, my mom had a blast taking turns on the activities and then Haley got out easily this time for her. (I had to drag myself out with a throbbing foot as in the water you have to use toes to balance and walk. ) She even was patient enough to let us all dress with the minor exception for her new game of throwing everything in any open toilet, like her sippy cup. (and a pool toy from class) Oh well.. trade off one thing for something minor anyday! Yay for understanding swim teachers and helping grammie's!

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Single Parenting

by Rubiegem8280 on 07/18/2008

Somedays I am very grateful to be a single parrent, to have no one to argue parenting style or changing of rules or to coordinate schedules. But then ...

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The wonderful world of Swim lessons take 2

by Rubiegem8280 on 07/13/2008

Well, we were scheduled for a swim lesson today but alas, did not make it there. Many many facotrs on this one: Haley went to bed about 10pm. Not Bad....

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The Wonderful World of Swim Lessons

by Rubiegem8280 on 07/07/2008

Our first day of swimming was about a week ago. Being moderately limited in physical ability myself, my mother decided to come with Haley and myself a...

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Our first day of swimming was about a week ago. Being moderately limited in physical ability myself, my mother decided to come with Haley and myself and to go into the water as my arms for Haley's first lesson. We made it through the changing area with moderate anxiety but still managed. Then came the therapy pool room and the other 15 crying toddlers and babies and their embarrassed and excited parent(s). My daughter took one look at the pool, the people, and me and began the wailing. Not crying, not whimpering- loud, deafening wails of shear terror! The other parents glared, other babies began to cry, my mom attempted to step into the water with my daughter, knowing that she had always LOVED to run into the wake with us at any pool, stream, lake, or ocean we passed. This did not go over well. The shreaking went up an octive at least and she desperately clawed for me at the pools edge. So I took her. I then was required by her to not face the pool, not step near the water, and not allow my mother (who thought maybe if she showed Haley it was ok to get in) outside a 1ft radius. After 20 min of shrill squeals we gave up. The lady at the front desk was warm and very forgiving. She said that with her two grandchildren with Autism, it took weeks and not to give up as they have seen and heard everything!
I decided that we would give it one more try. This time with ear plugs for her to maybe deafen the echo or the kids or something? The minute we reached the changing room, it began. Feeling weak but still determined I forged on and into the pool room. We stood there for 10 minutes before class watching slightly older children get their lesson. She whimpered and clung to me but at least no yelling, right? Our class headed in next and I thought maybe if I just held her tight we could ease in. She shreiked every step closer we got. I think I still have the claw marks on my neck. But she did allow me to step in, eventually sit on the steps in the water, but crawled up me as her feet touched the bathwater temp pool. I let it go and stayed put for about 10 more minutes. After that I went down one more step, more screams like I was torturing her. Another ten minutes and I noticed her fists, toys and all were touching and then playing with the water. Not long after she was nearly jumping out of my arms to get deeper and more free. The lesson went well. She played her own games and her own speed and ignored the teacher and classmates but she SWAM! Kicked her little feet, dunked her head and laughed the whole time! She was all over that little pool! I could barely keep up with her. After the lesson ended we had one more fight. This time about getting out. She refused and I had to carry her to the top step, then let go to drag my own aching body out, just as I would get my feet to the last steps, I would have to turn around and chase her back into water nearly to deep for her to stand. 
Well, I think I would prefer that over the beginning. Thank you Bath YMCA, Kelly the teacher, and the lovely grammie at the info desk for the kindness, patience, and grace for which you have dealth with our minor "freak out's." Here is to many more (well ok 4) enjoyable laughter filled lessons!

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