Hurt Feelings from Comment made--Prior Entry--From Open Diary
I am not ignorant. I feel guilt for the inflictions that my child have, and come here to try and deal with those feelings. I am sure that many have made comments pertaining to this. I have seen them in notes--I have heard them through emails. You can judge me all you want, but you don't have to enforce the guilt that I already have. I could throw the towel in and just lay in bed, giving those children up to agencies that would deal with their needs themselves. I don't do that. I wake every morning and keep a damn strict routine to ensure that, some day my children WILL be on their own and fully functioning adults.'>
As I described my daughter, it was assessed that she would ALWAYS be like this, just from that one entry. Let me emphasize that, TAYLOR IS ONLY 5 years old. In one year alone after being in the autistic school, she has developed 3 times as fast as she would have without this education. Her intellectual capacity is strengthening at an amazing rate, reinforced with my consistent challenging her here, at home. It just takes a bit longer for her to learn the same techniques as your 'typical' child does.
And, no two autistic children are the same. You can have one, or know one, or been around one. You don't know MY autistic child. It isn't hard to read up on autism. You type it in on any search engines and you read. There are so many spectrums of this disease that, each one must be treated in a unique way. It takes time. It takes patience. It takes some venting, which I do on this diary. But most of all, it takes love.
I have enough of that to give, and I have no intentions of ever losing that bond that I have with my children as well.
As a mother of two children in this spectrum I know the differences very well. I do know that the parents of autistic children deal with challenges every day with their child, as well as outside of the home. I hope to always be of support to any parent with special needs children.
I have written this before in my diary, but it seems that some haven't read through enough and voiced an opinion by one entry. First, I wouldn't have RC'd that entry. I know the conclusion some come to when it involves special needs children. People would rather complain about the atrocities in Iraq than to try and understand some of children on their own home soil. Debate that amongst yourselves as much as you want, but it is the truth. Turn your head away from me and say I am being paranoid, but all you have to do is to go to each state web site and read about the cuts in the special needs programs. Look at the policies that state governors have dealt with this issue. I am one of those that has lobbied at our state house for the laws to change. It is hell--and I fight it more than any of you know.
How many of YOU have gone to the state house, numerous times and lobbied for what YOU believe in? I can tell you that, I have been at the state house in Massachusetts, 23 times in 2 years. I received a proclamation from our former governor. Am I proud of this? No. A proclamation is paper. The laws need to be changed and that requires much more work on my part. They are in for one hell of a fight.
I have a woman coming to the house today from that National Autism Association. I am trying very hard to start a school for our kids with autism, who have no place to go after preschool. In some other states it might be a bit easier. Some people might have more funding than I do as well. Massachusetts has a law on the books now that states--any special needs child does NOT need a diploma. Instead, give them a certificate and they will be happy with just that. Now, that is the ignorance I am dealing with when trying to get funding for this school. I not only have to deal with these laws, but try to change political minds as well. I will be lucky to get the doors opened in one year. Realistically, it might take 2 in order for me to get through all this red tape.
But you know what? I am not giving up. I will have that damn school open for all of these kids, if it is the last thing I do on this earth.
For those that don’t know my diary or bothered to read it all, this is my day:
I wake Taylor up, talking to her as if she was any other child. I do not see the autism when I talk to her. I see the most beautiful little girl with curly red hair, laying in front of me and silently listening to every word I say. She climbs out of bed and follows me through the 'morning routine'.
I have the same routine every single day of the week. You have to keep routine in order to teach her 'life skills'. And, yes--we teach life skills. It just takes repetition. And plenty of patience as well.
Taylor knows that, the first thing is breakfast. While I am getting the older kids into their morning routine, she will take my hand and lead me to where the bananas are. If they are within her reach, she will hand them to me. I peel them and place them in 'the same spot' every day. This is how she learns that, the kitchen table is where you eat and drink. She will hand me her cup and lead my hand over to where the refrigerator is. She then informs me through direct eye contact that, she wants a drink.
In other words, this kid understands how to communicate. It just took me hours and hours of reinforcement through sign language (ALS), pictures, and repetitive wording to do so.
Every step in the morning is spoken openly to her, so that she hears every word. Through this, she is understanding what it means to get dressed, put on socks, how many socks, put on shoes, how many shoes, go get your jacket, put your backpack on the door and wait for the bus. I do this every single morning, never changing the routine until she has it perfected.
Bath and bedtime are all done the same way. After she is bathed and dressed, Taylor goes for her toothbrush and waits for me to put the toothpaste on. I say, 'let's do the top ones first', and she does. I continue until every last tooth is sparkling clean. She then goes into her bedroom, climbs into her bed, gives me her book and we read.
The only difference between my reading to her and you to your child is that, I point to each picture as I read the words. I then take her hand and have her do the same.
This is called LEARNING THROUGH REINFORCEMENT.
As soon as the book is done, she lies down and snuggles up. She waits for me to cover her up and then lays on her back so I can rub it. She then laughs at me as I kiss her goodnight, and I turn the light off.
She is now in bed.
I am not going to go into what I do with my other 4 children. I don't think that is necessary. I do homework every night with all of them. Each has their own 'friend time', once the homework is finished. I do not allow any of them to go outside UNTIL HOMEWORK IS FINISHED. I cook supper almost every night--not out of a box, or take-out. I cook REAL FOOD. Esoterica can attest to this--she knows that I love to cook and do it easily.
I make sure 3 are showered and 2 are bathed. I clean my own house every day. I make 5 beds. I clean two bathrooms. I also do work from home every day. On weekends, we have 'family night' in which, I allow the 3 older kids to pick what they want to do, and we do it. This is automatic. The only excuse to miss one would be a death in the family. Since my family are all dead, the chances of that happening are slim and none.
Now, my oldest daughter was brought into this, and that part truly hurt my feelings even more. I don't write EVERYTHING in my diary. Molly has a sleepover every weekend. 4 days a week, she has after school activities with her friends. During the weekends, she plays with her friends. She and I have one night that we try and spend time alone, girlfriend-to-girlfriend.
Some believe that, kids don't need to have chores anymore. They just should be kids. I believe that, learning responsibility and getting an allowance for it is the way to grow up responsible. I was on my own, legally at 18 (although really out of the house at 16). I had lots of chores as a kid without an allowance, so being on my own helped immensely because of the skills I learned from my grandmother.
Molly doesn't like to clean. The boys have taken that job instead. The boys clean up the toys at night before bed. They empty the dishwasher, and I put it all away. They all bring their own dishes to the sink. The boys wash the table (and I wash it again afterwards), as Molly finishes her homework. The boys then have ‘quiet time’ while they watch TV and are in bed by 8 PM. Molly is allowed to stay up until 9, because her homework takes much longer. She needs ‘quiet time’ afterwards, as well.
Molly wanted an allowance and to have a paper route. All of her friends have paper routes. I don’t feel safe with this. There are too many NUTS out there, and I don't want her going door to door, collecting money from strangers. As an alternative, I let her decide what she would want to do in the house. She decided that, she would baby-sit if I had to work come in, and baby-sit for one hour on Saturday night so T. and I can go out and talk. She also helps get the babes dressed for bed. I don't think that is much. Some may have grown up differently, or bring their own children up in alternatively. That is their choice. I don't think earning an allowance is a bad thing. I never earned one and I had more chores than most kids in my neighborhood had, if they had any at all! Molly has very little that she has to do. She puts on 2 pull-ups and two sleepers, or cleans up where they have eaten at night. When she baby-sits, all the other kids are in bed, and I make sure they are asleep. I have very good neighbors on both sides of me that check in. I do the same for them as well. We are also very close as friends. I bring the cell phone with me and I am less than two miles from my house for one hour, every other Saturday night.
I felt my life was becoming a debate, as well as the lives of my children. If you don't read me all of the time, you don’t know the milestones we have accomplished and what plans are ahead of us as well.
I even have my death covered. I have a guardian set up, the house will be paid off upon my death, and a fund is set up (only in children’s names) in a trust. I have life insurance as well. I have heirlooms that could be sold, if that should need to be done. My kids are well taken care of, long after my death. Also, I have another guardian in place, in the event of the first one becoming ill or, god forbid that they die while caring for my children.
I know this will sound selfish but, I didn't start this diary to educate the world. I opened this up because I don't like counselors. I have found some very good friends here, and very supportive as well. The reason I never liked RC is because, it opens you up to people that have never read you before, comment on one entry before they have read the rest of your diary. Some of us have regular old diaries, where we talk about laundry and feeding the kids cereals. Some are here just for the social aspect of this diary site, which can be wonderful!
Some of us are looking for support and a listening ear. That is what I wanted. I lobby through emails and in person so much that, the last place I want to start my lobbying is here.
This is my space for talking about things in my life, amongst those that I feel are my online friends. It isn't an encyclopedia. I just don't have the time for that, and I do like having my following small. If I didn't, I would be noting all over the place. I only note those that I feel comfortable with noting me back.
I was a bit dismayed that I was blocked by a very popular diarist this morning, although it doesn't surprise me. That is okay. That is her right. I have unblocked the other person, and only authorized blocking because of the way the notes seemed at that time. Maybe some think I am wrong for that, but the notes began talking to each other, and my diary began to sound like a debate. I was hurt by a comment about my oldest daughter, and upset that she was brought into the entry at all. It is possible that I wasn't being lectured, but it certainly felt that way and I just couldn’t deal with it.
Plus, that noter never noted me before. I have had her unblocked for months now. To the noter: Why did you wait for that moment, after my best friend disagreed with your friend, to comment? It felt as if you were trying to enforce what your friend had suggested--this wasn't a debate. It was just a vent and I needed a shoulder--not a commentary. Your note FELT LIKE a commentary.
Also, ESOTERICA is my best friend. She has been there for me, every day, and every night for 5 years. I don't want her hurt, and I won't allow it either. I respect other friendships--please do the same with ours.
No one is blocked now. But, I will say this:
I am moving to a new diary. It is on OD and will remain private, but can be read if you would like a readers password to do so. If someone wants to read, they can leave their name and email on this entry and I will email them back with a readers password. However, I will only be read by those I know, that know me and I think, care about me as well. This diary will be closed after this entry. I ask that, the person blocked yesterday not note and leave this alone. I will only check back for names of those wanting a readers password--and I will post the email address on the front for anyone else that wants a readers password, once I read their diary.
There will be NO MORE ENTRIES on this diary after these three pages. And, if I should decide to keep this one open as a back-up or a regular, "I steam cleaned my upstairs carpet" type of diary, I just might do that here. However, my life in a whole will not be discussed here ever again.
I also will not respond to notes on another diary. If you want me to note you with a response, I wont do it. I am sorry but, I really feel terrible. I really was hurt. I am still hurt. I am trying to open eyes, and open a world for kids that don't acknowledge it, right here in my local life. I am trying to give kids chances that have autism. It is a long road, and I need a place to vent. This diary isn’t being used to open eyes. It is opening the window to my soul instead.
The new diary will be that window to my soul.
Maybe I seem thin-skinned or totally wrong in some eyes, but I am being honest by stating my feelings.. You see, ignorance runs ramped in my life. I deal with it daily. Ignorance hurts--but, doesn't require comments like those mentioned in the first note that I was hurt by. She has since apologized and I have accepted that apology. If the note hadn’t started with, “I WILL PROBABLY BE HATED”, I wouldn’t have taken the note the way I did. However, it also opened my heart to hurt that I didn’t want to feel at that time, and it made me realize that, having an open diary with such personal feelings is not for me.
***NOTE**
The comments made in notes to me about my children with special needs, caused me to leave the other diary site. This was just one of my final entries.
One person actually accused me of CAUSING my children's special needs and should not ask for help, governmental rights, or aid from anyone of any sort!
Unfortunately, we live in a very judgmental world that, needs to walk one moment in our shoes. I can guarantee that, many of them couldn't do it.