Posted by J.L. BOSTICK at 5:05 PM
Sunday, January 23, 2011
I had to write up a post to update on our little Miriam! Lately she has been speaking so much, cracking jokes and just being active with the world a little bit more than normal.
Lately at meal time instead of saying the basics, things like "more and want ice cream" she has been saying things like "Miriam want some more food (ice cream, etc.) or my favorite part she can distinguish dinner from lunch for instance when she REALLY REALLY enjoy's the meal she says "Miriam wants some more dinner/lunch/breakfast." If she wants a drink she says WHAT she wants in the form of a sentence instead of just "drink or some more", she says "I want some water" or "I wanna drink of water" or "Miriam want some tea, ice tea" (we don't let her have tea, not sure who ever did that she knows what it is!). Sometimes she says I want to play with sisters or Miriam want play dough" She actually PLAYS with toys now, presses buttons on her own, etc... She also drinks from a regular cup now without a straw and can scoop her own food with a spoon or fork but we have to kind of "order" her to do it. Since we had that breakthrough she has been very stubborn about using her utensils. Not sure why, maybe testing boundaries, who knows! We have been noticing her counting more and we are starting to think she is counting words, like counting how many numbers you can count within a word. It has taken me a while to realize what it is she is doing but she will say a word but before she does she counts out loud. Like when she asks for ice tea, before she asks she counts really fast 12345 then shouts ICE TEA. I had Tom say ice tea on the phone while he was at work while I counted 12345 and it was perfect. Miriam thought it was hilarious and she started doing it with me. It is the oddest thing I have ever seen, I know Autistic kids can have an obsession with numbers but this is such a weird "skill" to have that I don't know what to make of it. All I know is that counting out loud is something she likes to do. I used to count with her when she got frustrated and started hurting herself (which she still does), maybe it calms her?
Anyway, this is just some of the latest newbies Miriam is showing off. Everyday is like Christmas when she does or says something new. Every parent looks forward to their kids taking their first steps, walking, talking and developing like normal children. We parents of special needs children have a lifetime of the excitement of the first steps. They aren't always fun to wait for but when the day comes we cherish every second.
I have been trying to get Georgia, my 3 year old, to clean her room since 9 o-clock this morning. I finally just told her "Georgia, either get your room clean or you are going straight to bed after dinner" to which she says "NO, I'M NOT CLEANING MY ROOM I RUNNING AWAY!" I was about to argue when I realized how sick of arguing with her I was so I gave in with "Fine, fine, run away, good bye Georgia". To which she says "FINE, I running away! I gunna go get my stuff!" I look at her on the brink of hysterical laughter and say "well, what yah going to take with you?" She says "I gunna take my buzz lightyear and Broby!" She stomps away and I hear from her room "where in the heck is my Dora backpack!" at this point I break down into said hysterical laughter. Georgia marches out of her room with her Broby doll and her Buzz light year (minus a Dora backpack) . I say to her, "well, so long Georgia is was great knowing you!". She goes to the door, puts her hand on the knob, pauses and says "Mommy, can you drive us?" *insert more hysterical laughter here* I say as I laugh "oh no, you're running away you have to do that all on your own!" She stands by the door for about 5 minutes then comes and says to me with her toys in her arms "mommy, I don't think I want to run away n ee mor."
Tuesday, January 11, 2011
2 years ago we were told about a procedure being done in China that could help our daughter see the world. A procedure that has helped hundreds of SOD children suffering with blindness over the past few years (just about all who had it done). When we found out how much it cost and that insurance covered none of it we started fund-raising. In the process of fund-raising we encountered disaster after disaster and we raised no more than 1300.00 out of the 60,000 we needed. We got a very limited amount of help, people we hardly knew from church donated time to make us baked goods and help with a bake sale, an auctioneer we had never met volunteered for an auction (only 1 person showed up due to the local newspaper Taylor News failing us and not helping to get the word out, sad since the Taylor Lions Club president was an employee, he ignored us and their cause is to help the blind!!!) and we had 2 family members donate money , one donating some time to help make fliers. We couldn't get anyone to tell anyone about the fund-raising cause, help us do fundraisers in their areas (and we know people who KNOW PEOPLE), post the website to Facebook/Myspace (maybe 10 people did this for us out of the 100's of friends we had), NOTHING. Heck we could hardly get anyone we knew to join the FB page we created for Miriam, we def. couldn't get them to share it with friends. For the longest time I felt like killing myself, that is what fund-raising did to me. It made me wish my daughter had a different mother, someone who might actually be able to get the job done. A mother people gave a damn about to give a damn about her, a mom with better friends and family. She is an angel and it is impossible for people not to love her so I knew the problem was not her, it had to be me. After the mess of failures and a miscarriage I gave up. I took it as a sign from God that this was not meant to be even though I couldn't imagine how he would have told us about it if it wasn't. Ignoring that I resigned myself that my child would be blind forever. I decided that if I could not help her I would walk, run, strut, dance, sing and play in whatever cause for the cure for blindness I could find. I would help a cure for her to come to the United States so we would not have to travel to a dangerous foreign country to get this revolutionary procedure (a country whose medical advances is FAR superior to ours might I add) and so we would not have to rely on the "kindness" of others. In an effort to follow through with my commitment to my daughter I started a team for the 2011 San Antonio Vision walk. I have been on the phone all morning trying to find people to join our team and walk with us. A commitment months away giving anyone enough time to prepare but what do I get "oh no, I just can't commit to that". How is it NOBODY seems to give a damn about our child? I know this walk does not directly affect her but it does help other children and it does help blindness. Regardless of the illness it cures it IS a step in the right direction for Miriam. For every cure discovered a new scientist is open to find a cure for something else. I am trying to see the big picture here, why isn't anyone willing to put aside their selfishness and help? So many other parents have been able to raise money for their children and for these kind of causes so this baffles me. Is this really a testament as to the type of people we surround ourselves with?
Now I have to say, I don't feel "entitled" to anything. I have busted my ass for everything I have in life and I expect the same from my children. But I do expect a little bit of compassion from people who claim to love and care about us. Some of those people we have gone out on a limb for so many times it makes our heads spin. Trust me, my head is spinning just thinking about how much money we have loaned, how many couches have been slept on, houses lived in, food eaten, rides given, FB causes shared, etc... I expected nothing for the things we did, heck I have never even brought up the help we gave to people until this blog post, the moment I hit my limit! But it would be nice if for once they would say, hey, lets help THEM for change! When fund-raising for Miriam I never once asked my or Tom's family for money (or our friends). I asked them to share and help with time. I asked my mother in law to pass fliers in her area, a place we used to live, all I got was "no, I don't think so, I can't do that". I asked my brother to ask if he could put some fliers up at the convenience store he worked at, again "no, I can't do that, I already know they won't let me"...HOW DID YOU KNOW? We asked a close friend if they could spread the word around their college campus "I would if I had any time". Asked my mom who is a truck driver if she could pass out cards and fliers at her rest stops but she didn't even want to talk about it. This was the response from almost everyone we knew when we asked for a little bit of time. Some of the time we asked for took less than half a second to tell someone a web address. I would do every bit of this and more for all of these people and they know it. It frustrates me so much, I just want to scream!
I am to the point where I am just not going to bother anymore because all of this is not only killing my faith in God and people in general but it is killing whatever faith I might have had in myself. I just feel like such a failure. Why would God trust me with one of his special children? Look at the horrible job I am doing!
And for the record, I honestly don't care about alienating the people around me, they alienated me years ago! I am tired of holding it all in.
Tuesday, January 4, 2011
I am not sure why but for the longest time I thought to myself that if only we "knew" why Miriam was like she was that I would somehow be able to cope with it a little bit better. We got past all of the fits that everyone said was caused by the Septo Optic Dysplasia, they were crazy, maddening and headache inducing but we got through them so why is it these "new" fits are making me insane? I know I am not supposed to admit I am going crazy but I am not exactly someone who keeps everything bottled up, they are making me NUTS! It seems once she hit the big 6 everything changed. Her fits are absolutely astronomical, sometimes she throws fits just to throw them while screaming "stop throwing a fit" over and over and over again. We used to be able to sit in a restaurant and have a semi pleasant time but not anymore. The second we walk through the door of an eating establishment she goes mad with waterworks. The funny thing is , she isn't even crying REAL tears! It is the most fake display of emotion I have ever seen in my life. She cries and talks REALLY loud. We went out a few days before Christmas and literally had to leave because she spoke at the top of her lungs. Screamed she wanted "ice tea" about 100 times before she got the tea, screamed at me to shut up, hush up, etc and did the "stop throwing a fit" time and time again. It was fine while we were sitting in an empty restaurant but once people started coming there was no way we were sticking around. We did get somewhat of a break at our New Years breakfast the other day. Once she started her door tears I took her straight to the bathroom where we stayed until she calmed down. I thought for sure it wasn't going to work because I took her out and the second we left I had to turn around and take her right back. After a few minutes she quieted and actually stayed that way all through dinner. The funny thing is, at breakfast she was the most quiet she has ever been, quiet as a mouse with her tea and her french fries (about all she will eat these days) and this was the day someone chose to say something to me. The lady sitting next to us must have been "waiting" for the opportunity to say something because the moment Tom left for the ens room she leaned over and said "You know, I raised 4 girls, they were all mean just like yours, they abandoned me and are still mean, that is your future" then Tom came back and she immediately shut up. I wanted to kick, scream, tell that woman what an idiot she was, (if I was younger maybe even punch her lights out..lol) and that my kids weren't mean. Heck my other 2 hadn't made a sound since we had gotten there other than telling us what they wanted to eat. It is people like her that make it hard on these kids, why so many parents keep their children locked in the house. Well, I got news for that lady and anyone else out there, my child WILL NOT be some miserable recluse and we will beat this Autism thing. I don't know how but we will do it, I know there is no cure but people push the limits of Autism everyday. I just wish I knew why now, why is it the ugly head of Autism is making it's grand appearance at such a full force now? I know it has always been Autism, not just the SOD that caused her strange behavior but it has never been so bad before. I always dreamed of the day the endocrinologists always told me about though, the day they said everything would fall into place for her. The day she would start moving towards normal as far as her mind went. I got over the idea of her never being able to see my face in a conversation but I am having trouble with the fact that conversation might never come. I think the Autism has now become harder than the blindness, harder than the medications, harder than any of it. I just want to talk to my baby, have her understand me and have her talk back. The one blessing I try to find in it all is that not only can she tell me the things she wants to a point but she can smile when so many autistic children cannot. I don't think I could handle never getting to see that perfect smile of hers. My beautiful perfect Miriam who might never be able to have a full conversation with me but will always be able to tell me she loves me just by the joy on her face. I guess in the end, that smile is what all of us special needs moms and dads are working towards. What any parent works for!