Friday, July 15, 2011
Rewarding? in all honesty....REALLY?
I was reading a blog post from a friend of a friend who is a part time step mom to a severely autistic child. She refers to her life as "mother" of said autistic child as "rewarding". Though I can say that I have learned a lot from my daughter who is blind and autistic I cannot claim to feel rewarded. It is hard to feel rewarded when my day consists of non-stop raging fits triggered by ANYTHING and everything, seeing her injure herself (she bites herself), watching her spin herself in circles until she pukes or praying that today isn't one of those days where she uses her own poo as a paintbrush! All of the moms of autistic kids I know look like they are half a second from pulling their hair out most of the time. But like I said, I have been taught a thing or two, I have been taught patience 10 fold, taught never to take a hug or smile for granted and that I should STAY ALERT to the contents of pull ups. Hearing someone go on and on about "rewards" makes me wonder what they are doing that they never have to deal with any of the things I or all of the other mom's I know have to deal with. At the same time, I feel a little insulted that she sums being an autistic mom up to only the good things which with an autistic child really are few and far between (about 25% of the day). Where is she the other 75% of the time? If you are going to claim to be a real "autistic mom" you shouldn't sugar coat it, we moms need to stick together and give GOOD information, not misleading information. No...rewarding isn't the description I would use to describe my life as an Autistic mom. Stressful, frustrating, thankful that it isn't worse and that my child is one of the "smilers" is more like it. But honestly, I don't feel rewarded about having an Autistic child in particular though I do feel rewarded to have a child in general! In fact, I feel MORE than rewarded by that, I feel down right blessed but I feel the same way about my non autistic children as well. Then again, I never hear her bragging about her other stepchild, I guess having one of the "normal" ones is a little boring to her exciting autistic momdom!
Wednesday, July 13, 2011
Cancer, motorcycles and hugs..oh my!
It is always so long between blog posts. Things are always so hectic around the house these days and the present moment is no exception. Between raising 3 girls we have recently been given a few trials from the Lord that we are currently working through. I was recently diagnosed with cancer on my cervical wall. I have been going to and from appointments having things done and to get the results from those various things. Thankfully the cancer has not spread and can be removed , that will be happening on the 18th. I will be going in to have a LEEP procedure to remove the cancer and a part of my cervix, at that time I will be having polyps removed from my ovaries which apparently has been the culprit behind crippling pains I have been having the past 2 years. This has been a frightening ordeal but I am thankful to have been able to make it through it with my head still attached to my shoulders.
To top that off Toms father was in a horrible motorcycle accident over past holiday weekend. He was thrown from his motorcycle and ran over by a car. He is now in the hospital fighting the greatest fight of his life with broken bones pretty much head to toe. The Lord was with him however because he had no severe internal injuries, all fractures and breaks. Of course that is severe but it could have been much much worse. He is currently doing better having been moved to his own room out of ICU. He has a long road of surgeries and physical therapy but we are confident he will overcome this trial.
The girls however are all doing fantastic! We were complimented recently from the leader of Miriam's Sunday school class. We had not been to that particular church this year and after a class with Miriam she was amazed and asked us "What have you been doing with Miriam because she was amazing in class, she spoke, played and was very cooporative." I told them we had removed her from school and began teaching her at home. The leader said to us "Well, whatever you are doing at home...DON'T STOP because she is amazing!". I think perhaps having her here with us all the time we don't really notice 100% of the changes in her so it was nice to have our choice validated. But then again, Miriam herself validates it each and every day! Just the other day we brought home a small puppy, Miriam has always been so annoyed by pets but we noticed that she actually enjoyed a small dog a friend of ours had so when the chance to bring home a small dog was presented to us we jumped on it. We let her pet the dog and to our amazement she laughed , giggled and called it "doggy". But when I put it in her lap she calmly pushed the doggy away and said to me "I can't handle this anymore." That was Miriam's way of saying I want to pet the dog but my lap is a bit too close...lol I too am amazed at how much speech and physical activity we have managed to get from her from playing with dogs , to asking to play with her dolls or cars, to asking her sister "Georgia or Sophia wanna play?", to asking if she can take a bath or a shower. She has come such a long way! It is nice getting to see her play with her sisters and actually play with toys. We have been blessed!
Georgia and Sophia are growing like crazy and are such a mess. Georgia still loves to learn and her care for others is truly amazing. I have never seen a child worry so much when someone isn't feeling well. She literally pets all of us when we are sick, she is wonderful! Sophia is Georgia's shadow and Miriam's favorite. There isn't a time I don't see Sophia giving her big sister Miriam hugs, she even climbs into bed with her at night if she gets scared. Sophia is a handful right now as she goes through the terrible 2's, I think perhaps she has combined the 2's and the 3's. But as did Georgia I have faith she will grow out of them even though I do not look forward to the next 2 years!
Sunday, February 13, 2011
Miriam update!
I couldn't be happier with the progress our Miriam has been making these days. Besides the fact she is starting to "initiate" play with her sisters, she has been requesting things like playing outside "want to play outside" but her sentences and requests are getting longer. Here is a list of conversations that are not the result of parroting (IE: hearing the answers before hand then responding. She is starting to understand cause and effect in conversations in that when she is asked something she is supposed to answer it. Not only that but she is actually comprehending the questions and connecting them with an answer that is appropriate to the question.
1. What is your name? MY NAME IS MIRIAM!
2. Miriam, where do you live? I LIVE IN TEXAS!
3. Miriam, how old are you? I AM 6 YEARS OLD!
4. Miriam what do you want? I want some cookies or chips.
Besides questions like the ones above where she answered questions she has also been initiating and responding to conversation. For instance...
Miriam: "Mommeeee, I want some pizza!" Me: Miriam, you want some pizza? Then Miriam grabbed my face , found my ears then in my ear she said loudly in a very miss smarty pants tone "GOOD GOD, That's a what I said...PIZZA!"
We have also been noticing that she is comprehending and laughing at Jokes on television and has even been telling her own jokes. For instance she decided to make a play on words which she found so hilarious, at the same time we realized she is noticing similarity between words which leads me to believe a breakthrough beyond breakthroughs is on it's way and despite what others have told us she might end up being able to read. In the car one day she started saying "daddy" over and over again, we couldn't for the life of us figure out why she was doing it until she finally said "daddy like day day a play on dada" When she discovered this new word and found her "day day" answered to it she laughed at the top of her lungs, something she does to this day. She thinks calling Tom "day day" instead of "daddy" absolutely hysterical. Though she does still call him "daddy" she will randomly decide when she had his attention to call him "day day". We find this interesting because Georgia, who is 3 has been going around calling by the names of her favorite cartoon characters, something I found out is normal for a 3 year old. Miriam is pretty much doing the same thing now.
Another thing she can officially do for herself as of this morning is put on her pull up. I have been noticing her pull up coming off during the day and ending up back on backwards or inside out. I wasn't sure if it was her doing it , as she tends to do things when she doesn't notice anyone paying attention, or if it was one of her sisters who used to not only pull of theirs but hers. So one day I opened up the pull up , sat Miriam down and ordered her to "put your pull up by yourself Miriam." Less than a minute later she was sliding it over her butt by herself. This gives me hope that potty training is going to happen sooner than later.
One more interesting thing she has been doing is playing with initiating toy play. She still plays with a lot of them not quite as intended but she IS seeking out toys and playing with them. Her favorite toys as of late are little metal cars and rubber duckies. She actually asks for rubber duckies if she cannot find one herself.
Every little thing Miriam does confirms the fact that homeschooling was the way to go with her. She has become more sociable and active than I ever could have imagined her becoming had she still been in school. If I knew how I would go out and tell everyone whose child is blind and autistic to pull their child out of school right away and to take the home school approach. I wish schools understood what I have found in the past few months, that blind children NEED one on one. I think if more schools understood that fact they would be a lot more supportive and helpful when it came to teaching special needs children at home. I am sure there are other special children who could benefit from the same environment. All I know is that you CANNOT properly teach a child who suffers from blindness and autism in a sighted school. Public education facilities simply do not have the funding or the training to handle such special needs. Not to mention the fact that most special needs educators are inadequately trained in dealing with the blind. I thank the Lord every day that he led me to this decision and made it possible!
Sunday, January 23, 2011
Miriam Update
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.
Georgia going bye bye!
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
I need to vent!
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
Autism Woes...
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! 