Life sucked. I was a struggling single mom who had been through one of the worst divorces that I could imagine. I was financially devastated, even going through a foreclosure on a half-million dollar house in Florida. I had just moved into what I called my "white trash house in my white trash neighborhood". Even my boyfriend, Shawn, and I were having our difficulties. But the hardest, darkest, most sorrowful presence in my life was my beautiful, though damaged, daughter, Julia. Julia suffered from a brain injury when she was only one year old....that was two and a half years ago, and the stress of raising her had led me to have resentment toward her, to not want to be around her, and to, some days, not even want to be her mother. This left me feeling like a horrible person.

I reached out to my Uncle Howard and Aunt Mary for help. They were into "nontraditional" types of "healing" and I thought, what do I have to lose...I am at such a desperate place in my life right now, I will try anything, even if it is "hoakie". They agreed to come out, but would not be able to make it til Memorial Day. I was honestly surprised they were going to make it at all, as every time it seemed I asked for help from people, they misunderstood me and moved even further back away from me and my family.

One evening while resentfully caretaking, as usual, for my daughter, Jack brought a newspaper in that had been laying on the driveway for three or four days....I had just left it there, hoping it would throw itself into the trash, as I didn't feel I had the energy to pick it up and throw it away like I usually did. Jack brought it in and asked....."what should I do with this mommy?". I told him to just throw it on the table and I would dispose of it later, after cleaning up after Julia - my little tornado, who daily left my house in shambles by the end of the day.

After Julia went to bed, for whatever reason, I took the newspaper out of its green plastic sleeve. The story on the front page caught my attention. It was the story of a mother, Margaret, who also had a daughter with a disease that left her unable to walk, talk, show emotions, eat, etc. This woman took care of her daughter, Alexis, for 29 years before Alexis died unexpectedly five years ago. Margaret was hosting an open house on Mother's Day, in honor of her daughter, at a house they were in the process of building for Alexis and her caretaker when Alexis passed away. I told Shawn I wanted to go to Alexis's House and I wanted to meet Margaret. I also read in the article that she had written a book on her experiences with Alexis, and was having a book signing the Saturday before Mother's Day. I wanted to go, but had to work and was unable to make it.

Mother's day arrived, and all four of us, Shawn, Jack, Julia, and I drove to Alexis's house. We were the first guests. Margaret thought we might be the only guests, as nobody showed up to her book signing the day before. When we walked in, we introduced ourselves, and I told her about Julia and that I really wanted to talk to her. Margaret was visibly moved and even teary, as, in her words, she now knew why she had the open house. See rememberingalexis.com. I have no idea why it won't post the link, but worth cutting and pasting.

Memorial Day weekend arrived, and so did Mary and Howard. I was not sure what to expect, but was pretty sure it was going to be some kind of judgemental intervention on how I was raising my children and how negative a person I was. I had prepared myself all week for the comments that I was sure were going to be made, and had my back up responses programed to defend myself and try to make them understand WHY I was so negative. I KNEW I was right and they were wrong and I was going to prove my point on how difficult life was for me and get some sort of justification from them. Well, that didn't happen.

Mary and Howard explained to me their thought and belief system, and did some treatments on me to try to rid me of at least some of my negativity. They also treated Julia. They treated my friend Pam, who also has a brain injured child, Makenzie, who came and spent Saturday with us. The also had the pleasure of meeting Margaret. Margaret and Howard seemed to have a lot of thoughts and beliefs in common - as she said he didn't tell her anything that she didn't already know. He showed her a few more things and treated her as well, and if anything, took care of a pain in her neck. :) Howard and Mary bought several of her books, and through some connections, are going to try to get the word of her book out to many more people than it would simply by word of mouth. Ironically enough, Margaret had skeptically visited a psychic who told her a younger man in Denver would help get her book out to many people - could this be Howard? He is a little younger! :)

I am definitely feeling less "stressed and negative" than I was four days ago. I see and feel beauty and strength when I look at Julia. I am not "healed" but I have a better understanding of how "thoughts become things" and am going to try to incorporate this into my life on a daily basis. I am sure I will slip back into the negativity from time to time, but hope I am able to pull myself back out with some of the techniques I have learned and that really do seem to work.

Thank you Howard and Mary for your visit. You touched many lives while you were here in such a short period of time.

Susan

Neurologist Appointment

Julia and I went to see Dr Parsons at Childrens Hospital yesterday. We were there for about four hours total (most of it waiting and waiting and waiting....you know how human doctors operate..), but when we finally saw Dr Parsons, she had the following to say.

She was thrilled with Julia's gains in the motor department. She said she was getting around really well, and Julia even attempted to run a few steps while she was there. She was happy with the tone in her arms and legs. She was happy with how much she was using her left arm and hand as she never used it like that previously and would use her mouth instead as her second hand. She was thrilled that Julia could point to most of her body parts, including her brain (thanks Shawn for teaching her that one...it is cute!).

The things she wasn't so happy about were Julia's cognitive functions. Julia was "playing" in the office as we were talking, and towards the middle of our talk it looked like a tornado or hurricane had hit the office. (Like my house looks most of the time). She asked if this was typical behavior and I answered honestly - yes. She also was just sitting back and observing her and said she does not think she is suffering from a "typical" global "delay" in her behavior and milestones. She said she is showing some definate neuro atypical behavior.....behavior that may resemble autsim. She recommended a very structured all day program and mentioned a couple places - that are not near Castle Rock and asked me to look into them....I did....and they are 4K a MONTH for "full time" M-F from 8:30 to 2:30 pm........so not sure how that would work out unless I win the lottery. So, not sure exactly where to go from here, but called Julia's case worker and left a message for recomendations. Hope to hear from her soon.

I received Julia's end of year summary from her preschool, and she received all "1s and 2s" on her objectives that they were trying to get her to meet - meaning she did not meet them, thus qualifying her for a continuation of the program through the summer months....so that is bitter sweet - at least she can keep going without a break, but I wish she would have met more of their goals. Keep trying baby girl, you WILL do it someday.

I have visitors coming from Oklahoma this weekend, Sissy and Howard are coming to work with Julia and I and others close to her, to try to help her conditions. Looking forward to their visit.

Susan

What an amazing woman....and family. As many of you know, I have been struggling lately with my grief over Julia, yes, even though it was over two years ago. I was feeling depressed, unappreciated, misunderstood, and alone. It was taking a toll on many of my relationships and I was losing hope for remaining "functional". Then an odd series of events occurred.

We get a weekly newspaper in Castle Rock - a small community newspaper - one that I NEVER read - no time for things like that, right? I just picked them up off the driveway and threw them straight in the trash. Well, there was one on the drive for about 3 or 4 days and Jack brought it into the house and asked what to do with it. The trash can was full, so we said, just throw it on the table, and he did. For whatever reason, I picked it up, took it out of the plastic, and read the front page. The following story was highlighted.

http://coloradocommunitynewspapers.com/articles/2009/05/05/news_press/news/07_rm_alexis.txt

I told Shawn I wanted to go to the book signing, but was unable to make it due to work on Saturday. I then told him I really wanted to go to the open house, not sure really what to expect or if I would even get to speak with Margaret. Well, we went, and we talked, and we seemed to have a mutual understanding of how it feels to live with these situations. She confirmed many of my feelings as normal, but also, carefully, corrected some of the things I was doing that were helpful to nobody. I bought a few copies of her book for certain people and have already read half the book in about an hours time.

I am so glad to have met Margaret. She has given me a glimmer of hope and a brighter feeling of FAITH than I have had in a very very long time.

Alexis's website..check it out...

http://rememberingalexis.com/




Susan

Julia"s path tonight while I was on the phone....

http://www.youtube.com/watch?v=qpFbIH6ZiCo

frustrating to say the least.....my fault for not putting the baby gate up as soon as we walked in from daycare, but the phone was ringing, so I answered......

Another interesting article regarding swine flu and vaccination.....and a man who got vaccinated for an outbreak in 1976....and got encephalitis.

http://www.denverpost.com/keefe/ci_12281978

Thank you Shawn!

Thanks again to Shawn for pointing out things that I do not see when dealing with Julia's issues on a daily basis and with so much emotion involved since her injury. She is doing better and I just need to be more patient! The serenity prayer always comes to mind but in the midst of everything, I lose sight of those things.



Attention Span
Previous: No focus at all. Would go from toy to toy and activity to activity without joy or recognition, nor looking at you or seeking reassurance; no action to get you to engage with the playing. No apparent interest with anything in particular.

Current: Dramatic improvement. She still has trouble sitting with you in your lap or similar situation, but she does play with her toys individually and will watch TV (especially if it’s something she really likes) for minutes at a time. Has very specific toys that she will play with for several minutes unprompted and enjoys them, indicating such with a smile, laughing, or repetitive motion. Much less need for an adult to “hover” and shadow every movement for fear of injury; often times can now go upstairs, to the restroom, laundry room, etc. with little fear of major incident.

Dexterity
Previous: Unbalanced, difficulty walking for extended periods of time, very limited use of left hand, “wobbly” at all times, unable to activate many toys or “open” things. Constant worry about walking on uneven ground, stairs, steps, etc.

Current: Is now attempting to “run” and often “hops” which seems to be very enjoyable for her. She can open many “child proof” containers and frequently activates many toys in a consistent fashion (especially noise-making). Can easily navigate the stairs; can now (just recently) get in and out of the bathtub unassisted. At a recent therapy appointment, Erica indicated that Julia was trying to use her left hand to take off her zippered sweatshirt; this behavior was not prompted nor taught before this. Has navigated snow and rock beds outside the home without falling.

Affection
Previous: Little or no affection, mostly bordering on indifference.

Current: Often seeks physical contact and “play” as well as unprompted kisses. When changing diaper at night or getting pajamas on she will “hug” for seconds at a time. Now uses a “pat” to say “hello” or just to let you know she’s there. Actively seeks some kind of contact from anyone she knows; seeks physical play and can get annoyed if it is not returned.

Problem Solving/Advanced Function
Previous: Struggled with the most basic “cause and effect” and was frustrated with these things; often became irritated. Little advanced actions shown; was content just generally throwing things or moving things around.

Current: Displaying common two to three year old behavior: not liking the word “no”, asserting some independence, and trying things on her own. She is opening doors, cabinets, appliances, etc. all the while testing reactions and results. She can open most of the aforementioned plus “child proof” and “spill proof” containers using unusual resourcefulness (i.e. using leverage or teeth or persistence). There is a story to highlight her recent strides: In the car on a return trip from therapy, she was getting irritated and threw her favorite singing toy on the floor. I picked it up, precariously, as I was driving (sorry but you know how that goes!). Well, of course she did it again. I picked it up one more time, putting it on the back seat atop the dog’s blanket just out of her reach (unintentionally), saying “If you throw it again, then it stays there!” Much to my delight, she looked at me quizzically and proceeded to pull the blanket towards her to get the toy! She thus got the toy into her hands and played with it the rest of the drive home. In retrospect, this was one of the most rewarding efforts I have witnessed, as it displayed problem-solving, resourcefulness, and determination.


Speech
Previous: Incoherent noise, screaming, droning, “yodeling” or whining.

Current: Obvious effort at verbal communication. She knows some signs and uses them for common things such as “more”, “done”, “please”, etc. She has repeatedly, although without an apparent pattern, used the words “mama” and “baby”. At times, she seems to be trying very hard to speak, often times screaming or moaning between words; I interpret this as her perceived and real frustration at really wanting to, but not being able to, completely verbalize her emotions. Just today, she pointed at a small, white whiffle-ball and clearly uttered “BA!” This just happened, but in looking at it again and sharing it with many people I think it reaffirms my complete belief that within 6 months we will be saying “remember when she didn’t talk all the time?” She consistently appears to be trying to talk, and exhibits all typical behavior that accompanies learning to speak – she watches mouths, she mouths words, babbles, etc.

Word Recognition/Reaction and Direction Recognition
Previous: Indiscernible.

Current: Usually now she will readily react to your promptings and directions. “Get the ball”, “where’s the baby” and similar commands are usually met with a positive response now (including one night where she correctly accomplished the task “get the red ball”). She constantly wants one to join her in pointing out things in her favorite books. She frequently will point out, when prompted, certain items in such books – the butterfly, the ball, the crab, “Swiper” (her favorite), “Dora”, “Boots”, etc. This is a marked change from previous behavior. She has recently begun to want to and assist with feeding the dog, including opening the closet where the food is, holding the bowl, pouring the food, picking up spilled food and placing it in the bowl, and now going back to the closet when the dog is done (presumably because she usually wants more than the first serving!).

Behavior/General/Misc.
Previous: Indeterminate. When I first met Julia I had little idea about her affliction or what would go along with that. In all honesty, I had not dealt with a situation like this so I had no assumptions and thus no judgments.

Current: Julia exhibits typical behavior for a two-year old; I feel this is outstanding given the physical and physiological effects that Julia experienced. The daycare provider indicates now that the very mention of the word “No” inspires a tantrum and undesirable behavior. We have seen this at home when shutting a door that she wishes to open, saying she can’t have something, etc. There is a definite challenge with trying to understand what she wants; she will point at and make noises at things she seems to want or need. Julia is exhibiting the tendencies and behaviors of a child from 24-36 months, despite the non-verbal issue. Julia, although obviously behind in development, is very intelligent, aware, and receptive to everything that those who interact with her provide. She is very aware of negativity, tension, and frustration; she seeks understanding and patience.