Archive for October, 2018

Just a glimpse….

Monday, October 1st, 2018


A glimpse of what a life is like with an autistic child…… I’m just venting here, not really thinking anyone will read this, but I just felt I had to put my personal thoughts on paper, it feels better to write things down sometimes. I am only describing how I feel, and what I think others may feel too. Some of it is down right raw, please look past the judgement and maybe try to understand, if everyone was more understanding rather than judgemental we would be living in a much nicer world.

Not sure if its the cold wind in the air and because its a gloomy day but its just one of those days that makes you want to weep. Everything and everyone gets you down and you can’t stop the negative thoughts that come to mind and you just sit and wallow in your sorrow. I have so much to be grateful for and yet I can’t help but think well it could be better. I try to tell myself that it could be worse, way worse, but its hard to overcome the negativity with the positive. It’s a daily struggle to keep positive and to not worry about the future. I worry about the boys, but those seem like normal worries but when I worry about Elizabeth, it takes on a life of its own. She’s doing well, speaking somewhat now, not really conversing but we communicate.  We celebrate the little things, one word, a smile, a song she might sing, a sentence she might say, sharing a toy or a snack, making a spontaneous comment out of the blue. It seemed like I waited forever until she  finally learned to say “mommy” or “I love you mommy” and now I feel so thankful and excited each and every time she says it,  but for every little joy and accomplishment, like having her say cheese when I take a pic and actually smiling, there are many more worries that are overwhelming and loom over us like a bad cloud ready to pour down rain and the fear of it never ending. Its just hard, everyday is hard, always dealing with one type of problem or another. Getting and keeping the clothes on, brushing hair or teeth, sensory problems, does certain clothing itch or not feel comfortable and how do you know if they aren’t verbal. Do lights and sounds bother them, as usually it does in varying degrees. There is so much to learn about a child with autism as they have many issues they have to deal with on a daily basis. My worse fears are when we go out, and boy am I scared of taking her out, for so many reasons. I’m scared she will run off and I won’t be able to catch her, I’m scared she’ll get into someone’s face that won’t understand, I’m scared the kids will reject her, or not understand why she doesn’t always respond when being spoken too. I worry that they will classify her as weird or not normal if they see her sing to herself, or make loud noises, or cover her ears. I’m scared to take her to friends’ houses as I don’t know if they will understand and its not a fun time for me, as I’m constantly looking at her, making sure she doesn’t break something in their house, or try to climb somewhere she’s not suppose too, or if she’s not playing or sharing with her playdate, or if she’ll find a way to get out of the house, or heck maybe forget where the bathroom is and pee and poop on the floor. Only to be scared that we will never be invited back. I’m scared people will think we aren’t good parents for they may disagree with the way we do things with her. We have lost friends since her diagnosis and I don’t know if its because of her and her autism, or is it us, but it hurts either way. I’m scared of her future and what will happen if her dad and I aren’t around, will her brother’s take care of her? I’m hoping she will be independent but we won’t know that for years to come still. She has no friends and I think she could be a great friend, but she will need a friend that will be really understanding and patient and will put up with alot unknowns and different behaviour, or rather not familiar behaviour. I fear highschool, even grade school, she’s only in grade one but eventually a mean kid will say something to her and it breaks my heart to think of what she is going to go through. I can’t always be there, and if and when someone hurts her, it will kill me that I can’t fix it for her, that I can’t hurt the person that hurt her, even though I believe in what goes around comes around, but when it comes to my child, all bets are off, and if I find out someone is hurting her, God help them.  She will have so many obstacles to climb and crawl through and jump over. I want to protect her, but its hard, I got to let her be a child and to do things, but its different, I wasn’t so afraid of letting go with the boys as I am with her, I just fear what she might do or get into. I have to watch her as I fear for her life, parents of autistic children have to think of the unthinkable as we have to cover all our basis, so when we think what if she gets lost, will she be able to communicate with someone or will she even be found, and that’s when we get id bracelets and tracking devices, all of which we have tried but she broke the gps watch, and won’t wear her id bracelet, so I feel like I can’t ever take my eyes off her. I go to the playground, or just see kids all around and I envy the simple life they get to lead and how my child won’t have a life like that. My heart breaks everyday for her, every time I take her to get on teh school bus and she needs a harness while the other kids get on without one, or how I have to explain to the driver that she may take off some of her clothes or to not give her her back pack because she will get in it and eat everything in her lunch box all at once and make a mess in teh process. I have to explain to everyone that we meet that she is different and to expect the unexpected and I can only hope they don’t hold it against her or me for that matter. Sometimes I feel like I’m not taking her out enough or doing enough things with her, but the thought scares me so much and all the possibilities of what may happen often cause me so much anxiety that I don’t go. I feel like I’m keeping her in a jail at times. I get tired explaining a thousand times to her about different things, when another child would have understand after the 100th time they were told. Don’t touch teh stove takes on a whole new meaning with an autistic child because all it takes is one time for them to touch it and then you are dealing with a hurt autistic child that won’t let you care to their wound and are freaking out and crying in pain, and then what do you do? I dread thinking that if my little girl ever breaks her leg or needs stitches, I have no clue how she will deal with nurses and hospitals and needles and the pain. I have seen how she acts to mosquitoes bites and bruises, she is more apt to play with them and scratch at them and make them worse and not leave them alone, so hurting herself is a constant fear I have for her.  I want to sit and watch a movie with her, but she won’t sit for more than 5-10 mins and she’s up and running around and most likely wants to do something else, as nothing can contain her attention for long periods of time. She won’t let me brush her hair, and its so hard, and I wanted a girl for so long and now I have one and everyone tells me to cut her hair, but I don’t want too, I wanted a girl with long hair so I could do the things to her hair that my mom did to me, but she won’t let me touch it and if more than one day goes by where I haven’t brushed it the knots in the back of her neck get so bad and it makes it harder and hurts her more to brush, its a vicious cycle.  She is so sweet and so loving but so much work, and I fall to bed exhausted every night. I just want a break, a lunch date with a friend, go out to see a movie, a date with dad or with one of the kiddos or my mom. No one other than another mom of a disabled child understands what we go through in a day. We run a marathon each and every day essentially, and especially if we have more than one child. EAch autistic child has their own problems, many have similar issues and many have other issues, its true when they say you have met one person with autism then you have met ONE person with autism, not two are alike. What my daughter deals with is different than what my neighbour with their son deal with but we do have similarities of course. Not only do we have to feed them and clean and bath and dress them but some smear their poop, some hit their heads on the wall or some sway back and forth, some speak, some don’t, they all have different issues with lights and sounds and forget about sensory, I have heard it say that a turtle neck can feel like the child is being strangled, or a sweater can be so itchy or a 3/4 sleeve can drive an autistic person bonkers, so you have to figure out all these things. Many have digestive problems, and eating habits are poor, Elizabeth won’t eat meat or veggies or fruits, maybe apples and bananas sometimes, and she used to eat watermelon but not anymore. We did the gluten free and dairy free diet, didn’t work. You try almost anything to help your child. You take them to many different doctors about so many issues, and then to therapists to try to help me speak and learn and develop and then continue that at home, so you are a mom but have to become their teacher and their advocate and you learn to fight for them, to go to the higher ups to get things done for your child’s sake, to fight the educational system and demand an EA in the class simply because you fear they may run and they need more attention, so smaller ratios to children and teachers in class. You have to fight the government as they are not doing enough, children need to be assessed at an earlier age, and get more help, therapeutic help, the earlier the better. We need more centres for autism. More therapists to help our children, because if our children are helped at an early age, their progression is so much quicker and they learn so much more and have so much potential in the future. Our daughter almost missed out on pivotal therapy all because of her age. They had capped it so that you couldn’t get this early childhood therapy unless you were under the age of 5, do you know when we finally got the word that she was accepted into one of these programs? Right after her 4th birthday and I thank God she got in when she did, as she did 2 years of 1:1 ABA therapy and it helped her so much. If she was 5, she wouldn’t have been offered that placement, and why, because of her age, AUTISM doesn’t stop at age 5!!!!! Don’t get me started. I went and protested and wrote letters and petitions and joined groups and went to rally’s all for the sake of our children and getting them the therapy they needed. It’s crazy what us parents of autistic children have to go through to get help for our kids. Parents need money, aba is not cheap, its about $50,000 a year but of course we have our government we just have to get on a waiting list and wait our turn because their are not enough therapists, enough centres to take care of all these kids. If we have money for infrastructure or immigrants, then we should have money for OUR children, they will run the future, they will vote and they are the ones you need to worry about and help and protect and provide every measure of assistance possible, I’m talking to the politicians here because in the end these children will become adults and they will vote, and most likely not for the ones that didn’t help them when they were young. Between dr’s appt’s and therapists and writing political leaders and educational superintendents to just making sure they are in your constant eye sight, or not too far, as many know, you turn your back, and all heck can break loose. My daughter would destroy furniture, the walls, computers, ipads, tv’s, vcr’s, just about everything in one way or another. Throwing it down, pouring liquids over things, playing with the toilet water, or cracking eggs into dinner that was just made,or pouring flour all over the flour, the mess just never ends. You basically need to be a wife, mother, teacher, nurse, therapist, maid, friend, and everything in between when raising an autistic child. We essentially run on empty, on fumes by the end of the day and we have many down days, many days when we get overwhelmed and feel like we are going to lose it.  A lot of us even think of the worse at really low points and on days where we do everything and its not enough, and our child is hitting us, or hitting themselves, or crying uncontrollably or breaking and making messes all over, that their lives would be better without us (its just the frustration talking) because we know that WE, their moms are the only ones that truly know how to deal with them and if we weren’t here we fear what will happen to our precious children, so that usually snaps us out of black haze, the stupid thoughts that occasionally creep into your mind and you are so tired and overwhelmed and you think you just can’t take anymore….and Yes, daddy’s can feel the same way, daddy’s help, they are there and they try,  but there is no bond like a mother’s and when you spend 24/7 with a special needs child, you learn everything about them and every way to calm them down, to make them happy, to help them when they are upset or angry, and even then, it doesn’t always work so you improvise and pray to God that it works, it becomes a lot to deal with. I know a few mom’s with autistic sons who are violent and I know how hard it is with Elizabeth and she’s not violent, so I can only imagine dealing with what you have and adding violent outbursts to that. I just don’t know how some do it. Their autistic children who won’t sleep, they won’t sleep!!! I mean some sleep for an hour or two, how can a parent function while staying up watching your child and getting up for work the next day, or even staying home with the child, its crazy. Some hit themselves over and over and they need to wear helmets, some break walls with their heads, some hurt the parents that love them so, and not because they want too, its that they don’t know how to express what they are feeling. They have so many things going on at once, its hard to focus, and therefore must be so frustrating. When a child is on the floor in the mall, its not because they aren’t getting what they want, its because they can’t express what they are feeling at the moment and its all too much and may need some time to calm down. Some need hours to calm down, others need minutes and maybe a good strong hug for a while. I remember leaving the aquarium with Elizabeth last year, she loved it so much, didn’t want to leave, and she just got overwhelmed and started screaming and laying on the floor and my hubby had to physically carry her to the car. I felt like people were watching us, maybe even video taping us thinking what bad parents we were, but at that moment, we had tried everything we knew to make Elizabeth understand that it was time to leave. I didn’t give her a warning and that may have been enough to set her off, as they usually like routines and need to know when something will finish ahead of time so they can prepare. Now I tell her all the time, Elizabeth you have 5 minutes until bedtime, or 5 minutes until we have to go, she may protest, but she knows its coming so she is prepared. I guess I’m writing this because I’m tired. So tired, and I just feel for the moms that deal with this daily and no one knows what we go through on a daily basis. So here is just a little bit of what goes on in our lives, and trust me that there is so much more I could say and I’m just scratching the surface, and I can’t stress it enough, if you know any moms with a disabled child, please reach out to them, they most likely won’t reach out to you, we will think you probably want nothing to do with us anymore, and may think you are mad at us even, we won’t want to bother you, so please pick up the phone and call them, talk to them, take them out for lunch, or to go shopping, to see a movie, somewhere before they go nuts!! I read that mother’s of autistic children usually get PTSD, like soldiers in the war do, because we are constantly fighting battles that we do not know how to win. We have to learn a different language as autistic children think and process information differently and they get very upset when they don’t feel like they are heard or understood and many of them don’t have the capability to communicate verbally so its a struggle to figure out your child’s needs adn wants and it usually takes years of studying them to figure things out. We feel alone and lost and isolated, we don’t want to ask for help and we don’t want to bother other people, but we don’t know what to do and are often depressed and emotionally distraught. This is where a good friend can help. Seriously, a good friend is the best medicine, just a shoulder to lean on, to laugh with, to vent too. Bring them a meal, or wine,  or if you are really adventurous offer to babysit, they probably won’t let you anyways, but its the thought that counts. One simple nice gesture can do so much for a mom who is having a hard time, I think we all go through hard times, even when we don’t have disabled children, but think of the moms that have disabled children and how much MORE they have to deal with and what it would be like if you were going through that and how much you would love for a friend to reach out to you. OH… and please try to teach your kids about being nice to other disabled kids too, if everyone was nice, I don’t think moms would worry so much about their kiddos when they were playing at the playground. We don’t want your sympathy, we just really want your understanding, and maybe your time for a cup of coffee, or even a lunch. You have no idea how much your friendship means to us, the worse thing you can do is ignore us or stop talking to us altogether as it can be a lonely world and often a kind word, a simple gesture from a good friend means the world to us and is enough to bring us out of that funk that comes over us sometimes.