I Am The Parent Of A Special Needs Child

I am starting this post with a note I wrote and posted on facebook at the beginning of this year. I know some of you have already read it. I also know that I will repeat some of this info in the last part of my post. It was just easier for me to do it that way!

Facebook note:
When Isabella was about 1 I started to notice that she just wasn't developing like she should. It wasn't long before I knew it was more than a kid who was just slower getting to those targets and milestones. She didn't walk when she should have, even crawled weird. She would rather pull herself with her arms than get up on her knees. Then she wasn't saying mama or Dada or baba and she had odd behaviors. It would take me a novels worth of words to lay all the details out so I am just leaving most of them out here. I was always forth coming with the Dr. and he was like "it's ok for now but let's keep an eye on it" He was most worried about her speech. Time went on with little improvement so he set up a speech evaluation.....then we lost out medical benefits and couldn't afford it on our own (still can't so we have to self pay in full out of pocket every time) so the Dr. said "well, we can put it off a bit" so we did. Her speech improved and she seemed to be progressing but still slow. As she grew, new problems arose. You have all seen my pics and read my stories of some of this stuff....well you can multiply that by at least 100 and that is how it really is. The climbing, getting into things she shouldn't and everything in between. We would take her to a playground (or anywhere) and she didn't care about the toys, she just wanted to run away from us hysterically laughing and I don't mean run around...I mean RUNNNNNNNNNNN out into the street or out of a gate or into the woods, she didn't care. Going to the grocery store with her could induce suicide and I am not kidding. I would love to see anyone try to get her into a cart without breaking her leg. I kind of force her into the back where the groceries go cause she won't sit in the part where kids should go and then practically lay on top of her to keep her in as I start sprinting through the store begging her to be quiet and bribing her to please sit still. If she can reach something she will throw it on the floor so I have to make sure she is far enough from everything. I can't use the basket either cause she will throw shit out of it so I use the bottom and hand basket if I have to. She will throw her shoes too so I usually have to take them off. She tries to climb out every chance she can.Sometimes she thinks this is funny so it's like a game and laughing and the other times it's like a tantrum and there is no laughter and it's not a game for sure. If it's a good day and she wants to shop she will sing as loud as possible and do the "echo...echo..." cause she loves to hear herself. She thinks it's all funny too. Either way, no one in the store thinks it's funny. People have been so rude to me I almost cannot believe it told me I should leave, they guess I can't make her be quiet, she should be sitting (not standing) in the cart etc. etc. I have been asked to leave the library and no joke I only went in, walked up to the desk, got my book that was on hold and was checking it out and the lady said "do you want to come back? No bitch, I don't, cause she's gonna be like this every time and we are 4 fucking seconds away from walking out the door any way!!!!!!!!!!!!!!!!! I didn't say that mind you I just said no and that was it. One of the most horrific things for me that she does is scream "Help, stop, don't, I'm hurt, I'm sick, I'm stuck, no, please, don't, HELP!!!!!!!!!!!!!!!!!!!!!!!!" all of it, at once over and over. She does this everywhere in public, like the library and grocery store but TWICE in front of the police. Once I had to pay a speeding ticket at the court house and right around the corner from the metal detector where all the cops are. I told her we had to wait and stay here and I was holding her on the little counter in front of the clerks window and she screams all that while we are in an intense struggle for her to get away from me and I turn my head and the cops are looking around the corner. The second time, we were at the police station pressing charges on that kid Anthony had a fight with and she starts doing it again! You can imagine I am sure, the horror that would be right? She doesn't stay in her car seat. Everything in my house is on secure lock down. I have had to remove so many things from and put them in locked rooms cause she will destroy them. I have more gates than anyone I have ever know, they have been zip tied and arranged so many diff ways lol as pics have shown, we even made a cage once for around the wood stove but she just learned to climb over and into it. She is like Houdini. Then there was the time she learned how to open doors. I planned to get locks or door knob covers on my next trip to the store but within a few days she got out of the house. Joe was in the shower, I was getting her bath ready and Tyson had left muddy paw prints in the tub. I had to use cleaner so I had to shut the door or she would get into whatever in the bathroom or the cleaner. I cleaned the bottom of the tub only, it was 3 min tops and when I came out she was gone. I noticed the door to our garage was open, I ran out and the door to outside was open. I ran out into the driveway screaming her name, I hear nothing (and she didn't answer to her name when you called her anyway, not with words) I see nothing. We live in the woods in all directions, I was spinning around in the worst panic I have even felt and I am thinking...which way do I go???? I ran back to the house screaming for Anthony, we both go out running and calling her. I see a car coming down the street and I want to stop her and ask if she's seen her but as she approaches, I see Isabella on her lap. I couldn't speak, I was gasping for breath, she handed her to me out the window and then got out and hugged me saying, it's ok, she's ok are you ok? I could only nod and she told me that she had run 3/4 of the way down our street...towards the main road. My neighbor (Carl) snatched her up as the other (Crystal) was driving towards Isabella. So she drove her home to me. Isabella was barefoot, it was dusk, cold and rainy and she didn't have a mark on her. I put her in the tub just as Joe got out of the shower I told him quick what happened and walked away. I went into our bathroom and puked and cried and just broke down in sobs like I never have. I have been scared many times in my life but never have I felt pure terror like I did that day. She has broke our TV, our toilet A light bulb, glass and everything in between.

So when I started taking her to the family place, they had people come in and talk all the time about services in the community. One place was called the hand in hand program and they screen and evaluate for learning disabilities. I was reluctant for a short bit before I decided to do it. Turns out she is developmentally delayed. That's their official diagnosis. She does have characteristics of autism but very few. Also a few characteristics of ADHD. Their services are free and they give 14 kids in our county grants to go to a preschool for "special needs" kids. Isabella got one of those grants and had been going half and 3/4 days since August. She has made significant progress already. They feel like she she will be on target by the time she is ready for kindergarten. If she is not or does not progress at any time, she will be evaluated again. She has an I.E.P ( individualized education plan) so they do things dif for her than the other kids. One of the things being picture cards. Isabella doesn't like to comply and/or it takes her a few mins to adjust to what is going on or a transition. It's kinda like snooze on your alarm clock. LOL So they have pictures like a calm face and the group circle and when she sees them, she says "calm down, it's time for group" and in her mind it's like she is deciding, she is not being told. It works well and we use it at home to.

So all and all things are improving but 1 bad day can just break me. Raising her in general has been the hardest thing I have ever done. It's exhausting, it's soooooo frustrating and stressful. When she started school, it was the first time in 3 years that I had spent one moment....yes one single moment in my house without her with me. Trying to get anything done until then was just not even possible most times. Now with her in school it's almost impossible to get her to get ready, get dressed, get in the car, take a bath, eat, or whatever on time and it's just very overwhelming. It's like she's a full time job from 6-7 and I still have a full time job of home maker to do from 7-6 and then there is the rest of life on top of all this.For me the hardest part is that I do lose my patience and yell and snap out and it's not pretty sometimes. Sometimes I am just like "how am I going to get through this day, how much more can I take" I feel horrible because I know it's like "not her fault" I don't have a bad kid, she just can't do some of the things she needs to be doing. I know everyone will say that I am only human and all and yeah, I feel that way too but what kind of person would I be if I didn't feel guilty about it ya know? I AM doing my best, there is no doubt in my mind about that. There are a lot of power struggles and "negative" times and I hate that. I want to have fun with her, she's my Daughter. I can't do the same things that other people can with their kids. I can't even enjoy her sometimes. It's rough.

So there you have it (most of it anyway LOL)


Current post:
In June 2011, Isabella finished her first full year of school. She had met all goals set for her. Her behavior had improved dramatically. Over the summer, she made even more improvements. We had her potty trained, with only pull-ups at night. I was able to take her places, playdates, playgrounds, public places and most importantly, shopping. She actually really likes going to the store. There were very little outbursts in public and even less at home. She was no longer this huge disruption to our lives, hers included. I was getting everything in order and back on track. Life became manageable and that was really more than I could ask for. A huge weight had been lifted off my shoulders. She was however a bit bored at home and didn't really seem to understand why she couldn't go to school. When the new school year began in August, she seemed so happy to be going back. A few weeks into the beginning of school, all hell broke loose.

Her school is a preschool for special needs kids. So 5 years old is the max age. Last year the majority of kids in her class were at the tail end of their "treatment" so they were very well behaved with little to no issues remaining. Isabella was just starting her treatment and although she had some issues, she pretty much fell into place. The other kids seemed to be good behavior role models. There were only a couple of kids still having a hard time or outbursts and poor behavior. One of the kids was also new and just starting, like Isabella so they were on the same level. This year, most of the kids are younger and/or just starting out in the school. Isabella and another boy are the only kids that were also at the school last year. One of the teachers is new. There are quite a few kids who are really having a hard time. It's still all new to them and they are having trouble adjusting. There are a lot of outbursts and "bad" behaviors. The first 2 weeks of school had passed with no problems. Isabella seemed to be falling right back into place. Then all of the sudden she starting acting in up school. She then started acting up at home. Some of her behaviors were old ones and some were very new. Things she had never done before, things that had never been an issue. I stayed on top of it and talked at length with her teachers about it. We all seem to agree that we think she is regressing due to all the changes in her class. We also think that she is feeding off of the behaviors of the other kids. Behaviors that she really wasn't subjected to as much last year. We are in agreement that this is most likely a phase. We hope that it's just a phase and that she will adjust in time and fall back into place and be back on track. It's been over a month since this all began and it doesn't really seem to be getting any better. Nap time has been very difficult for her. Some days she lays right down and falls asleep with a little help. Some days she doesn't want to nap but she will stay on her cot and read or do a quiet activity. Nap time is from 1-3. Even last year she wouldn't nap the whole time so I had to pick her up everyday at 2, because once she woke up, she had a hard time staying quiet and it was disruptive to the other children who were trying to sleep. Recently she has been refusing to lay down and will not stay on her cot or be quiet for that matter. She starts screaming and carrying on and is extremely disruptive during that time. Last week they informed me that if her behavior didn't improve, that I may have to start picking her up at 12:30, after lunch and before nap time. Friday I was on my way into town to do the weekly grocery shopping and they called me and asked me to pick her up. She was out of control, throwing a tantrum. She is no longer able to stay for nap time at least for a while. They hope they can work on the other kids and get them adjusted and then bring Isabella back in slowly as time goes on.

This news was a little heart breaking for me, as it directly impacts my daily life in several negative ways. I know I am repeating myself a bit here with these details so bare with me. We live about 20+ miles from "town" where all the stores are for grocery shopping etc. Her school is also in town so I have to drive there and back twice a day. This year they decided to change the schools start time from 8:15 to 8:30. 8:15 was already an inconvenience for me, 8:30 is a huge inconvenience. I have to drop my son off at 7:45, his school is about half the distance from home to Isabella's school. So I leave at about 7:30-ish. I drop him off and then I have 30-45 min till I can drop her off. I was running a quick errand every morn to kill time which worked out, until she started acting up again. Now taking her to the store is not pleasant in any way. Also I don't always have an errand to run so I take the long way or drive a bit further and go back to her school JUST to kill time. Since we are so far from her school, my weekly gas bill is already about $80+ which isn't easy for us to pull off on our income. She also was getting picked up at 2 and my son doesn't get out until 3 so again I would have to leave at 1:30 to pick her up and then do something to kill that hour gap till I had to get Anthony. I can't afford to drive back home either in the morn or the afternoon. I have a friend with a Daughter Isabella's age who met up with me several days a week at a local playground for playdates to kill that hour. I was losing 4 hours of my day just dropping off and picking up my kids at school. Every week I planned my shopping around school hours since I have to drive all the way to town to shop. I can't afford to make one more trip into town just for shopping. I had to make sure I did it when I was already in town. Now that I have to pick her up at 12:30, my days will go like this: Leave at 7:45, drop off both kids, get home by 9am. Then I walk with friends every morn for 1.5-2 hours so I am done by 11 at the latest. I will then have 1 hour till I have to leave to pick her up. Then I have to drive all the way back home, we will be home by 1pm. Then I have 2 hours till I have to go back out to pick Anthony up. This leads to an extra trip back home, it's like an extra 14+ miles a day. That's gonna cost me money for gas that we just don't even have right now. I have no idea how I am going to pull this all off.

Life with a special needs child isn't easy. Being a parent and mostly sole caregiver to one is so difficult. With Isabella, I never know when she will act up. from one minute to the next, I have no idea what to expect. The simplest task can become a nightmare in an instant. Even though she loves school, for a while she would cry and carry on when I would drop her off. This is something she never did before, not even once. She would beg me to bring her home. I had to walk away and leave her crying and fighting the teachers. It killed me inside but I wouldn't show that to her. She will pick up on your weakness and take full advantage of it. Every day I told her, I was giving her one kiss and saying goodbye one time and then I had to leave, whether she was crying or not. This went on for a couple of weeks but she seems to be back to her normal self with the morning routine. I drop her off with ease the last 2 weeks or so and she just says bye and kisses me without a care in the world, just like she always had. I hope it stays that way. When I pick her up, she would be so excited to go to the playground. She would go on and on about how she was gonna see her friend Kyra and play on the slide etc. We would get there and she would have a blast. Then 2 weeks or so ago, she started throwing a fit when I would pick her up, she didn't want to leave school. A few days it took me 10-20 min just to get her in the car and get her in her carseat. She would be screaming "No mommy, no playground. I don't like it, take me back to school" Then she would calm down and we'd be off to the playground like nothing ever happened. Other days she would be fine about leaving and she's be excited to go to the playground, until we got there. We would pull in the parking lot and she would just flip out. She would scream about how she didn't want to go, she wanted to go back home etc. I can't afford to take her back home. We have no choice but to go to the playground. Eventually she would settle down and then she'd play and have fun, again, as if nothing ever happened. The other day after she settled down, she was still acting up by taking her friends toys and running away laughing. She climbed the fence trying to get out of the playground several times. Sometimes when we pull into our driveway she doesn't want to be home, she wants to go back to school, or back to the playground. She refuses to get out of the car. I have to leave her in there for a few min till she settles down, then she comes in the house as happy as can be, again like nothing ever happened. Transitions have always been an area she has been delayed in and had difficulties with but never have they been this bad. She has taken it to new levels of impossible. In the moment, I try my hardest to stay calm with her. If I feed into it one bit or lose my cool, it will turn a 15 min battle into a half hour of misery for both of us. It's not easy and I am not always able to keep my cool as well as I'd like to.

Potty training has been another area where she has regressed. It's one of the only areas where I have given in. I know how to pick my battles and this is one I can afford to give up on. Sometimes she wears underwear and sometimes she won't. If she wants to wear a pull-up, I let her. There are too many other things that I refuse to give in on. One of those is getting her to stay in her carseat. Sometimes she stays in without one problem. Other times, I have to pull over 5 times to put her back in her seat. It can turn a 15 min drive into a half hour trip. Not to mention it's very frustrating while I am trying to drive. She has started name calling and talking back. This is also something she has never done. Yesterday as she was getting out of her carseat, I told her if she did, I was pulling over, she screamed at me to "hush mommy" and told me "I going to kill you" I was horrified. She has never been hateful or spoke to me like that and I have no idea where she even learned "kill you" from. She has been feeding the dog things like paper, tissues, toilet paper, candy, her dinner, any and all of her food and snacks, a whole bag of popcorn the other day. She doesn't try to hide it either, she comes and tells me if she hadn't done it right in front of my face. Then she praises him and tells me what a good job she did. In the tub, she has been splashing and throwing water, refusing to stand up and get washed. She been throwing things when she gets mad. Yesterday when I picked her up at school, she had refused to even sit at the table for lunch so she didn't even eat. She has also gone back to acting up in public and throwing a fit in any store I bring her into. On Friday when I had to pick her up early, I was on my way to do the weekly grocery shopping. Since I can't afford to add another trip into town to shop and it was the end of the school week, I had no choice but to bring her with me. I had a 50/50 chance of things going well. I had to go to 3 different stores. The first was walmart. I only had to get 5 things. She flipped out as soon as we walked in. She screamed and cried about how she didn't want to go. She tore down a display of pet hair mitts to brush your pet that was hanging from the shelf. I had to pick up and rehang about 20 mitts. She was so loud that a friend of mine was in the store too and she heard her and knew it was her so she came to say hello, she located us just by following the screaming. I made it through that store and was on to the next. Her behavior was worse in the second store. I honestly thought I was going to just have to leave. People were starring and giving me dirty looks AS USUAL! At one point we strolled by sponge bob cheese nips and she begged me for them. I thought it might help so I got them and put them under the cart where I have to put everything, cause she throws anything she can get her hands on out of the cart. She asked me if she could have the box and she had calmed down a bit so I gave them to her, she threw them out and laughed about it. she was trying to pull things off the shelf. I have to keep the cart in the middle of the isle and make sure we are not near a display. She saw some kids (walking nicely holding hands with their parents and behaving) she was talking to them and saying hello but as soon as they went one way and we went another, she started screaming "No mommy, go that way, go back to those kids" I tried my usual trick of telling her she could play that game/machine where you grab a stuffed animal and try to get it into the drop box, she loves that game and this usually works well for me. It did not work at all this time and so we left both stores with her screaming even worse when she realized I was not going to let her play it and I didn't. She was better behaved in the third store. Not good but it wasn't as bad. I can't take her to many places, like birthday parties, restaurants (she also has food allergies and we never eat out anyway) the library, or any other place that is kid friendly. She doesn't do well yet in these situations.

Going through the struggles I do with her has made me realize just how ignorant, judgemental, disgraceful and sad people in this world are. I have never in my life been looked at the way people look at me in public when she is having an outburst. 90% of these adult humans just assume that I am a bad parent of a misbehaved child. I know this because they tell me with the ugly faces of disgust I get. For the most part I pay them no mind but it hurts my feeling all the same. They make me feel more embarrassed then she does. Some of them even comment and are extremely rude about it too. It takes everything I have left in me to not slap them right in the face. They have no idea why my kid is behaving like this, there is no way for them to know. I can remember as a young kid seeing parents in stores with out of control kids and even then I would give them a kind smile. Even then I felt bad for them and couldn't imagine what it was like. I would see other people giving them the looks that I now get and even then I knew it wasn't nice. I knew all of this because I am a compassionate, non judgemental KID who never assumed anything of anyone. Some people do give me a kind look or say something kind to me. I have even had people come up to me that saw someone give me a look or say something to me and tell me how wrong that person was. It's those people that I take the time to say, my Daughter has special needs and it's hard for her to be in public. After this last incident, I have decided to do something radical, something that I have thought about doing many times. If her behavior in public doesn't improve soon. I am going to make a sign that I will either wear or hang on my shopping cart. That sign will read something to the effect of: "My 4 year old Daughter may scream and throw a tantrum while we are in this store. If I don't take her in public she will never learn how to act right in public. Many of you will stare and give me dirty looks, or say something rude to us. Her behavior is due to developmental delays and being a child with special needs. What's your excuse for your behavior??"

I'd like to add that children who are autistic, developmentally delayed, have sensory disorders, behavioral problems, ADD, ADHD and so many others. These kids look "normal" from all appearances, they don't seem to have anything wrong with them. I think society is hardest on them. They judge a book by it's cover. They see a kid who looks like any other and just assume that they are bad. If a kid who had down syndrome was in the store, they would take one look and know that child had down syndrome. With kids like Isabella, this isn't so. I learned not to judge a book by it's cover when I was a child. Anyone who still doesn't as an adult or in this day and age is just plain ignorant and me and Isabella or any parent or child like us shouldn't have to suffer the consequences of your ignorance and your actions because of it.

This brings me to the people who aren't just some asshole strangers. The people who know us, even family and friends. I have been told I should smack her, punish her, give her time outs. I have been told I am not doing anything about her behaviors (I'll get to why next) I have been asked why is she like that? I have been told I am too easy on her that I give in too much. People have said how they wouldn't "put up" with that type of behavior from their kids or any kid. I can't tell you how angry this makes me. I mean she has issues, delays, problems, struggles, etc and whatever you want to call them. I wonder and often ask these people: "If she were blind and couldn't tell you what color something was, would you punish her for that? If she were deaf and couldn't hear what you said to her, would you smack her for it? Give her a time out perhaps? Would you "put up" with that behavior. I am doing the very best I can. No one gave me a rule book or directions to raising a child with special needs. I go mostly by what the experts tell me. I get, ask, search for and take any advice I can from the people who have been educated in dealing with children like Isabella. People who deal with children like her everyday. Her teachers and therapists etc. I also use my own judgement as her parent, the one who deals with her all day every day.

Before we got her evaluated and into this school, I was pretty much at a loss as to what to do, how to handle her, how to manage her behaviors. I was doing all the things I had done with my Son and all the other kids I'd cared for over the years. My view on discipline is different than most peoples in the first place. That will be another blog topic of it's own. I am not big on spanking and I have and will spank my child if I feel they need it. Usually there's not really a reason that a spanking is needed, it's usually dome because I lose my cool. I don't think it's the end of the world to spank your kid. I just don't think it's effective. It's less effective with Isabella. She thinks it's funny and often asks to be smacked or if you ask her if she needs a smack she says "yes" I learned way before I was introduced to this program that Isabella lives for reactions of any kind, good or bad. If she does something that makes you laugh, she loves it and tries her hardest to make you laugh again. If she does something that makes you angry, she loves that even more and will do "bad" things to get you to the point of anger. Even when I yell at the dog, she thinks it's the funniest things she has ever seen. She will often be bad for no other reason besides getting a reaction out of me. She loves any kind of emotion even, again, good or bad. Even though I already knew this, I didn't know how much my disciplining her was actually feeding into her behavior and often causing her to act worse. I thought that I HAD to do something discipline wise to gain control of her actions and behaviors. WRONG! Distracting her from the behaviors. Ignoring the behaviors. Showing little or no emotion and having little or no reaction. These are all what is considered a punishment in her mind. Her pay off is the reaction. If she climbs the counter and I come around the corner and see her and gasp out of fear, just that gasp is like a reward for her. So that day she may climb the counter 20 times to try to get me to react in the same way. She even tells me to gasp when she can't get me to do it. If I just see her on the counter, show no emotion and just pick her up and put her on the floor. Then with little emotion say "It's very dangerous to climb on the counter If you climb up there again, I will take such and such away" or something to that effect. I have to use whatever she sees as valuable at that moment. She may still climb the counter that day in hopes of a gasp but it may only be 5 times instead of 20. Once she realizes what she's doing is working, the behavior stops. When we were at the playground and she climbed the fence, of course that was really dangerous and I had to run from one side of the playground to the other where she was. I had no choice but to run or she would have been over that fence before I got there. Just me running had her in hysterics and she kept telling me to run and laughing. She takes things she knows she is not supposed to have and she takes off running and laughing just to get you to chase her. This is all difficult because there are those times where I can't help but react, either because I have to or because I can't control myself or forget. Once she gets the reaction once, it's hard for her to forget it and let it go. Time outs don't work because she gets up on purpose so you will go get her and out her back. Lots of times she will have her eyes right on you the whole time she is about to and while doing something she shouldn't. She's even got a smile on her face, just waiting for you to react to it. So what they have taught me is that it's ok to ignore her, it's what needs to be done in her case. Unless of course in those times when it can't be ignored for safety reasons for instance. I have to stay calm and not show any emotion, she doesn't like it one bit.

Just getting through an average day is rough and has become even worse in the last month. It's near impossible to get chores done, cook a meal, get to where we need to go and get there on time. I can't take her many places. her behaviors take up a great deal of time, time that really needs to be spent on something else. I end up with not many choices. I have to deal with her before I can get to other things. If she starts acting up, I have to stop what I am doing to deal with her. I have burnt a few dinners and forgot many many things that I really needed to remember. I have had to let a lot of things go, such as cleaning my house and doing other chores, simply because there isn't enough time in a day. Things pile up on me quickly and it's very stressful. It makes me feel as if I have no control over my own home. In actuality I have complete control over it. I could chose to stay up late and mop the floors. I could choose to burn myself out just to get it all done. I don't though. Instead I choose to deal with what is most important. I choose to do what must be done and let the rest go. I chose to go for a walk every morning even though I know my house is a mess. I choose to take care of myself and make sure I have what I need in life. I choose to do that because I know how important it is for me to be in tip top shape for I am the one who has to deal with most of the stress this life has dished out on me. I refuse to forget about me, I refuse to let this all get the best of me and beat me down. I know how easy it would be for that to happen. Even when I am taking care of myself, I still feel like any moment could be the last moment of my sanity.

When I posted my first note about Isabella and her issues on facebook, I got a mixed bag of comments. Some peopled applauded me for putting it out there, for sharing. Some people thanked me for making them feel like they are not the only ones with a chaotic life. I was also thanked for admitting that I lose my cool and I am not always perfect. I was praised for being so dedicated and so involved with Isabella. I was also chastised for putting it out there, for airing my dirty laundry. I was even asked why I would write that and post it publicly...by a family member. I posted a copy and paste facebook status about autism awareness day, which in it's quote added children with special needs and sensory disorders. I was asked why I posted that if Isabella is not autistic. Some people obviously read that whole paragraph and only really saw the word autistic. That person was also a family member. That showed me their ignorance but worse it showed me shame. None of those things would have been said to me if there wasn't some shame on their parts to have a child with special needs in their family. Since I don't have time nor would I take the time if I had it to deal with the ignorance of some people, those people have been cut out of our lives. Family or not, I really couldn't care less. I care about how people treat me and my children and I don't care who you are, if you treat me badly enough times, you can consider your self dead to me. I can't have negative influences in my life or the lives of my husband and children.

I have also realized through the response of others, that my ability to be so open about this and any other parts of my life seem to be rare. That is just so sad to me. People are actually reluctant for many reasons to stand up and say HI. my name is Melissa, I am the parent of a special needs child and it's not easy and my life is a mess because of it. Really??? Like it's socially unacceptable to have a child that is not "normal" Like it's a family secret that should stay a secret and not be talked about. I would write this and tell the world on any given day about the good and the bad, because it's the kind of person I am, open and not ashamed or fearful. However now I feel like it's my duty of sorts to say it. I feel like more of us should come forward and tell our stories, blurt out the horror of it all. I promise you, that you will be relieved. I promise you that it will open the door for a neighbor or old friend or stranger to say hey, me too!. If more of us came forward and talked about these issues, it would educate the ignorant and maybe people would think twice before they talk shit about me in the grocery store.

I realize this post is extremely long. It needed to be in order for me to get most of it out. I know I am leaving things out but I wanted to get the basics down so I can update you all with shorter posts without having to give the background of it all over and over. I also realize how all over the place this post is. I am going to edit it and spell check it to some degree but I am not going out of my way to make it perfect. It's 4pm and I started this blog at 9am. I had to stop twice to get both kids and half the time I was writing jumbled and all over the place, well, it's a perfect representation of my reality.

I would like to end on 2 happy notes:

The first is Isabella herself. This whole post has been about her negative side but that is not her only side. She is absolutely beautiful. She is extremely intelligent and above average as far as academics are concerned. She is very compassionate and picks up on peoples feelings really well. She is extremely giving and thoughtful. She is hilarious and a goof and very silly and she can brighten a room with happiness just as well as she can bring it down with disorder. She's not really afraid of anything, she's a risk taker and seems to love danger and thrills. She is very loving and loves to cuddle and hug and be rubbed or tickled. She loves affection, LOVES IT and she is very affectionate. She is musically gifted and impresses me with her musical talents. She is unbelievably coordinated. She can play video games and games on the computer and navigate on the computer like no kid I have ever seen that is her age. She is really a joy to be around a lot of the time. She is so strong in these traits that most people who meet her just adore her, instantly.

last but certainly not least, I would like to say that I am blessed with many family members, close friends, online friends and strangers who have been understanding of my situation. They have praised me a job well done in raising her. They are there for me when I need to vent, cry scream or laugh at the chaos that is my life. They have given me the support that is very much needed to survive this kind of life. Most importantly they love Isabella with all of their heart and unconditionally. I am both grateful and thankful to have people like that in my life. I couldn't do it as well as I do without all of their support. You all know who you are.