Tuesday, September 11, 2012

Living with Autsim: "Recovering" Autistic children

Living with Autsim: "Recovering" Autistic children: (So one of the desperate housewifes of IDK where was talking today about her son having autism, but she kept saying, we are trying to "rec...

"Recovering" Autistic children

(So one of the desperate housewifes of IDK where was talking today about her son having autism, but she kept saying, we are trying to "recover" him, and that really confused me, because the whole time am saying "well, hun where did he go?" Her son spoke before he digressed and that is what am guessing that she is talking about, my son never spoke, so idk what it is to hear my son say "i love you" like her's did. But I still think that she is being a bit , I don't want to say "dilusional" but like she is still stuck on her son before he started digressing, you know what I mean? I just found it really weird, because my son is my son, he just happens to be autistic, he just happens to be socially awkward (but how many of us aren't) he just happens to be non-verbal ( well i like to think of him as a great thinker) and he just happens to learn differently (not everyone learns the same).  
And its amaizing how people think differently, some actually believe that by doing special diets and doing all this stuff their son is going to "come back" whatever that means. How can you fix a missplaced wire, or wrong fuse with a special diet??? Idk that is just me, what do you ladies think?)

This is what I wrote on CM today, because it really bothered me, and I wanted to know what the other "supermommies" as we call ourselfs think about this.
But seriously, I even twitted about it to @Anderson, where did the child go? he is still there, I just think your not really looking at him the way he is now.  Just like a person that you met in HS, might not be the same way as an adult, maybe something drastic happened in their life and they changed it, for the better or worse. And I am a true believer that what my son has, was going to happen no matter what I did, not matter what I ate while I was pregnant, no matter how many times he cried as a child and I refused to pick him up and fall for his child manipulations!! 

I truly believe that it has to do with his make up, meaning it could be genes, it could be something in his brain that is not wired like ours, idk, all I know is that this is not anyone's fault, I know that, do I sometimes dwell on it and cry because he might not give me grand babies one day, yes, yes I do, because I am human, sue me! I do know that everyone has a different believe when it comes to Autism, but this is soooo far out that i don't even know how i listened to the whole thing she was saying without changing the channel, must be because I think Anderson is good looking, idk, but she kept saying, we are trying to "recover" him, and i was like in my head am going "did he fall down a well" what?? how can you recover him? how can you fix this? with a damn diet! you think that whatever wire is misplaced can be cured with a diet?? really? it helps with the stemming ( which btw, they do to feel good, or when they are happy)  but not the actual Autism! ( Yes I think Jenny McCarthy is full of crap!) Anyways, just wanted to put out there my opinion on the matter and letting people know that not all parents of Autistic children think the same.

Monday, August 20, 2012

Living with Autsim: School Started!!!

Living with Autsim: School Started!!!: August 8th, 2012 Ok so he started school, and its been a week and a half and I thought it was going to be hell on earth. I thought...

School Started!!!

August 8th, 2012

Ok so he started school, and its been a week and a half and I thought it was going to be hell on earth. I thought there were going to be late nights and early mornings, I thought that he was going to be moody, angry, hurt, and he would feel abandoned .. yes.. I am that dramatic lol. But no, by the third day, my son would not let me hold his hand while waiting for the bus, my son would push my hand away before the bus would stop and he would walk his little self up to the bus.
He has been excited, he has come home with so much energy, he is more interactive, he is more aware, he is more himself I guess. At 9:30 we go through our usual routine of bath time, and milk and he goes to sleep by 10 and he wakes up at 6. And I am shocked, of course he has his good days and he has bad days, last week he did have one day of meltdowns, today he threw up on the bus (he has a very mild case of motion sickness, that is why he doesn't like heights, like his mama :) and his aunt Katia) but I can't go running every time he falls down or has a mild case of motion sickness, he has to learn... no matter how guilty and shitty I feel as a mother ... obviously am feeling kind of guilty today...anyways, but look at my little man for his first day of school!!!

Tuesday, June 19, 2012

Living with Autsim: Tiredness and a Twitching Eye...

Living with Autsim: Tiredness and a Twitching Eye...: Sense Alex started group again this summer my left eyes has not stopped twitching. Its a thing I get when am stressed and just plain exhaust...

Tiredness and a Twitching Eye...

Sense Alex started group again this summer my left eyes has not stopped twitching. Its a thing I get when am stressed and just plain exhausted. I didn't use to be like that, everything would just wash off my back, and I mean EVERYTHING. I didn't care, before his diagnoses I treated him like a regular bullheaded child like his mother LOL then after the diagnoses and the therapies I have become mama bear to the freaking tenth degree. I worry about absolutely everything!
Just thinking about fighting him in the afternoon to leave him crying his little eyes out at group while he watches me walk out the door, breaks my damn heart and it stresses me out. It does. Its 10:43 in the AM and guess what, am freaking exhausted, am tired, physically and just freaking mentally.
My husband came home on sunday, and it was father's day, I had a few beers and we ate some good Cuban food, and then I totally crashed at 8 at night on the couch, both my eyes were twitching and I could not for the life of me stay awake, I was extremely tired, I think my body just waited for my husband to come home so I could just reset LOL but I haven't reset, my eye still twitching, am still tired and I have no energy whatsoever.
The thing is, while Alex went to school I would go walking and running, and that was a stress reliever for me. I would let go of everything while I was walking and running, and now I am not able to do it, cause I take him to the park and I have to worry about him wanting to go into the middle of the street or a stranger asking why my son is crying and then telling me that "i am so glad my grandson is healthy" after I tell her that my son is autistic... really... it wasn't necessary to say that.
And I have realized something about my self this couple of weeks... I have become a tight ass... I don't laugh as much any more, I don't have fun like I use to, my son is not to blame, and I don't even blame autism. But I do blame myself, because I know better. I know that I have to take it easy and not let things bother me and just accept things that happens, but its difficult, everyday the same thing, the same routine, the same issues and the same challenges, its hard, but a lot of people either chose not to understand or they blind themselves to reality, "things are not happening, his going to be better, he'll wake up one day and start talking, he'll wake up one day and be a regular 5 year old".... and its up to me, on my shoulders not only to educate my son, but everyone else around me, that is a possibility in the back of your head and this is ALWAYS is something that just doesn't go away, that he might never leave home, that he will never have a regular life, that he won't be able to adapt, that he will need help for the rest of his life, that you might not be able to give him siblings because you might not be able to handle the stress and you might break..... and I fight every day, every day I fight, because that is what I do, and at the end of the day I tell myself "i can do this tomorrow, I will get up and I will keep on going" because that is what I do, as a mother.
So I try to read, keep up with my recipe book, I blog, I love cooking so I cook everyday, just to have something new everyday to eat, or just to create, and I try to focus on other things besides on focusing on what might happen in the future. I need to relax, and I don't know how.

Tuesday, June 12, 2012

Living with Autsim: School Year Around for kids with Special Needs!!!

Living with Autsim: School Year Around for kids with Special Needs!!!: Yes, I am about to start a freaking petition, and trust me a lot of parents with kids with Autism would totally sign. Not because we want ou...

School Year Around for kids with Special Needs!!!

Yes, I am about to start a freaking petition, and trust me a lot of parents with kids with Autism would totally sign. Not because we want our kids to be taken care by someone else, or we want to be rid of them, NO, is because kids with Autism, and yes, I mean PDD and Asperger's, thrive on schedule and structure, they NEED to have some kind of schedule, that is how they develop faster. Is like if you let their minds rest, they can totally regress and start doing stuff that they were doing two years ago, and as a parent, you feel totally helpless!!
(And that is when the "depression" comes in, the "guilt" the "blame", and everything comes at you at once and then I go and hide for a little while and have a good cry and then I come back stronger than ever, because I put it all aside and keep on going.)
But seriously, these kids need school, they need something to do, as a parent there is so much you can do at home, because at home there are a million and three different distractions and they won't focus as well!! and not only does the child suffer, because they feel out of orbit, but when they try to go back to school or in my case (Group) they are giving the therapists and the teacher a hard time, because at least what I think goes through their mind "so i don't go school any more, I spent two weeks at home, with nothing to do but play, and now you want me to go back to Group time or to school?? why?" and as we as parents of kids with Autism, know that our kids do not think as we do, nor do they comprehend as we do, so we basically just confused the heck out our kids!! and I blame the school system.
I love my son to DEATH!! he is the center of my world.... but am about to tore out my damn hair. I have to think of different tricks to even get him to go out the door of the house so we can go to group. AND i can not do the same trick once, no no no no, because he is so freaking quick (proud mama) and he catches on! Because now he has this thing that he will not go outside, you have to MAKE him. And my son is 5 years old, almost 4 ft and weights between 58 to 60 pounds.... am 5 ft, and that's about it, ain't going to give you the rest! how dare you?! a lady never reveals their AGE! and he is strong, I mean scary I-can't-believe-your-son-is-five-he-must-have-super-powers STRONG... actually his teacher did ask me if i have had tested for super human powers.... yes, right before the MRI.... ok... so I have to wrestle him, to put on the clothes, last time I had to finish putting closes on him in the car because I just picked him and threw him in the car... and I have my arms all bruised, he has bruise (totally afraid of some one calling the cops, not only the bruises but the blood curly screams of terror that he does once I take out a pare of short to put on...) because I have physically wrestle him... but how long can I keep that up for? how long until I say "fuck it" lets not go to group and let you be a wild animal and caged in... but I wake up in the morning, and I totally ignore my twitching eye of anxiety and I do it all over again. Because he needs it, because I need it ( I go to group also every Monday) because after each night that he comes home from group, he is like the perfect little man. I just want the damn school system to work with me!!! 

Monday, June 11, 2012

Living with Autsim: Summer setbacks!!

Living with Autsim: Summer setbacks!!: Ok so its summer, Alex spent two weeks and a half weeks without school nor therapy, I tried to keep him occupied, between taking him to the ...

Summer setbacks!!

Ok so its summer, Alex spent two weeks and a half weeks without school nor therapy, I tried to keep him occupied, between taking him to the park each morning for 2 hours everyday and buying a small pool and trampoline so he can play in the yard.... but now, his having some set backs... he doesn't want to go out, now my son LOVES and I mean LOVES the out doors, more than I can say for myself and my husband lol but he loves the outdoors, he loves being outside and running and wondering and discovering... lately, I go and open his closet which to him it usually means we are going out side "lets get dressed" ... he totally panics, he starts screaming and taking whatever item of clothing that i have in my hand and putting it back in the closet.
To the point that he kicks me out of his room. We are also having set back with his schedule, which to tell you the truth, it was to be expected sense he has no schedule, its summer, so he has no fit schedule and that totally takes him out of his element. Which means he can go to sleep one day at 6 in the afternoon and the next day at 2 in the morning, which he has been doing the later for the past two nights, because he has no schedule.
Again I was ready for that. But still, its hard, for the past two days we both have slept basically only 5 hours a night.

Another unfortunate things is, its summer and people want to go to water parks or go other public places and they invite us, but they don't really know or realize that I can't take Alex every where, I want to, but if is an unfamiliar place with tons of people is a recipe for disaster in our lives and many people, friends and family don't realize what that does to Alex. If his not going to enjoy himself because he is in a strange place with lots of people, then there is no point guys, there really isn't. We know the reality of our lives, we understand who is our son, and am not going to put him in a situation where he might feel stress or totally confuse just to make someone else happy, or make someone else pretend in their miniature little brains that we are "NORMAL" whatever the heck that means. Even before we had Alex I realized that I wasn't normal, am me, unique and extremely sarcastic and anti-social, way before my son was born, you can ask my family... for real.

Part of the reason that I have this blog, is to make people understand that Autism is a real thing. Is something that we have to live with every day of our lives. We live with fear, everyday, my son doesn't speak, my son has no sense of danger, imagine putting my son in a crowded room or in a crowded public place, and I turn my head for one second, just one second, and he freaking runs off and I can't find him, now, how would I find him? he won't be able to tell someone he is lost? he won't be able to call for me... so then what? what do I do then? is not about having a spoiled brat for a kid, or an overly active child, is not, is about having a child with Autism! with real sensory issues and real developmental delays...

Today, I have to physically drag him to the car so he could go to therapy today, and so I could go to therapy today and discuss with therapist the anxiety issues that am having when I have to fight my son physically so he can even get in the car.... and then I have people ask me to go to water parks and other places with lots of people so I can physically wrestle my son to have a good time .... rightttttt!

Wednesday, April 25, 2012

Can't Speak!

I was on CNN this morning and I came across an article from Cherry Hill NJ about a father of a 10 year old Autistic boy, who has mild to severe autism and he is some what non verbal, who was being told by his teachers that his son was become violent. Now I strongly believe that most Autistic kids are not naturally violent, they don't hurt people or throw things because they want to hurt, they do this things because they can't communicate how frustrated they are, or angry, or sad, they just can not express themselves.
And in this case we see a father that truly knows his son, and he knows that his son is not violent, his a loving happy ten year old boy. So he wires his son and send him to school, and that night what he hears in that recording explains why his son is violent and not because he is being bullied by other kids, or because his just violent, no, is because the teachers and aids in the class room are the ones doing the bullying.
Imagine for a second, but yourself in this father's shoes, you have a ten year old boy who can't tell you that his teacher are calling him names or that they are hurting his feelings, and imagine how helpless you will feel as a parent, and imagine the guilt of knowing that you were sending him to that class with those people.
The father took the recording to the school, the aid got fired, but the teacher were moved to another classroom, allowing them to be around children, allowing them to keep working, keeping everything quiet.
Its incredibly disturbing that the school system is not acknowledging what is going on, the opposite, they are trying to cover it up.
And the father only wants an apology, he is not going to sue the school, there is no law suit, he just wants a public apology from the teachers acknowledging that they did something wrong, so this man can tell his son one that it wasn't his fault.
And you know the worse part, Autistic children have no malice, they don't understand that there is people out there that are willing to hurt you, they don't have a bad bone in their body. They are even unable to LIE!! Yes, they are incredible smart, at least my son uses his Autism against me, but I am proud of that, am glad he does that, because that tells me that he is bright, smart and sneaky lol but his unable to lie, he is unable to recognize bad people.

Wednesday, April 4, 2012

Living with Autsim: IEP Meeting for Alex's progress.... or complaints ...

Living with Autsim: IEP Meeting for Alex's progress.... or complaints ...: Ok so I went to the yearly meeting over at Freedom Elementary to see Alex's progress and his "issues". Alex is actually working with the IPA...

IEP Meeting for Alex's progress.... or complaints in this case.

Ok so I went to the yearly meeting over at Freedom Elementary to see Alex's progress and his "issues". Alex is actually working with the IPAD which is great, and means that I will have to invest in one. He is great with puzzles and physical activities.
But.. surprise surprise Alex is very resistant to things that don't interest him. If he is willing to do something then there is the chance to improve him in that particular activity, if he is not, then there is no way that you will get him to do it. And he has the attitude to do what he wants to do when ever he feels like doing it, there is no particular time that you can get him to do it, is when ever he wants, and he will get what he wants at whatever cost, or how loud his tantrums are.
Another thing that his teacher asked and I quote "you should get him tested for super human qualities"... huh? well, Alex is extremely strong for his age, other autistic kids you can guide their hands and no matter how resistant they are you will always be stronger than they are... not Alex, Alex can get the biggest man tired, because he is extremely strong, is pretty incredible. I got that from when he was like 1 1/2 when I found him holding a small plasma tv up because it was falling on him.... he was just there holding it up, he couldn't even walk at the time, he could stand holding on to things... but not walking completely.. so I know for a fact that he is very strong for his age. And to get him to do something the hard way is impossible because you are not able to force him.
So like my mother says, leave the teacher to teach and you are the one who educates him. And I realized something, everything that Alex has been able to do, is because I have fought him all the way, other wise he wouldn't do ... anything... And I am extremely forceful with him because I want him to be able to do the basic stuff without depending on others to do them, and for that I have had to force him, not physically, I understand that physically I can't force him because now is an issue, but when he gets older is going to be a problem. I am 5 ft, Alex is going to be at least 6f taller than me by the age of 15... so I know that I will not be able to match him physically in the future so I try to force him to do stuff by nagging him, by repeating everything 100 thousand times and be on top of him 24/7.... but that is my job, and I know he learns that way, but is much difficult with teachers and OP therapist and everyone else because they don't have the time, but I do... and I will get him to accept the fact that he is not going to be able to do everything he wants when he wants it, because that is not how life works, but I can't do that in a day, his only 5, like I told the teacher, maybe by the age of 10 he'll get it, but not right now.
Another thing... they haven't really found anything that interests him, nor is he a child that asks for much. Yeah if he wants to play or for you to tickle him, he'll get out of his world long enough to enjoy it, but other wise you can leave Alex is a room with everything he needs and he will not bother you... at all... and that worries the teachers, because there is not really anything that gets his attention real well, except being outside. And I told the teachers and OP and speech therapist, well, maybe that is what he is trying to tell us, his interest has to be an activity outside, but until we find what it is, he just likes to be outside and be able to be free....
He has a very difficult road ahead of him... but I can get him there.

Monday, April 2, 2012

Living with Autsim: Autism Awareness Month (Letter to Alex)

Living with Autsim: Autism Awareness Month (Letter to Alex): I saw this on Cafemom and I thought it was a great idea, in Celebration of the start of Autism Awareness Month to write a letter to your kid...

Autism Awareness Month (Letter to Alex)

I saw this on Cafemom and I thought it was a great idea, in Celebration of the start of Autism Awareness Month to write a letter to your kid, to a child or a person you know that has autism.

Dear Alex.

5 years ago my life completely changed. You are the best thing that has ever happened to me. You have made me grow up, you have taught me responsibility, patience and the most important one, love, pure and simple love, without question or convenience, without malice or resentment.  Before you I asked myself why I was the way I was, and what was my purpose, before you I never really finished anything, and I was very angry for a very long time for things that were so insignificant.
Then you came, and my world changed. You were so precious and unique and you were all mine. I fell in love with you the first time I laid eyes on you.
Then you were diagnosed with Autism. It was shocking, scary, overwhelming and very confusing. But I knew, that that couldn't stop me, my first reaction to this was, "well, whats next, what can we do?" it was wasn't to break down and cry and regret and feel guilt. I figured that out about myself, i am not the time of person that breaks down, because I can't afford to. You taught me that, and you have come so far and you have done so great, and am so proud to be your mom.
I will be on this earth for as long as I can to teach you how to be yourself, to be the best that you can be, because you can do anything!!
I am so great full to you because you made me realize why I am the way I am, and the reason I was put on this earth. And you are very loved because your a special boy.

Thursday, March 29, 2012

Living with Autsim: Schedules and Robots!!

Living with Autsim: Schedules and Robots!!: So I was talking to my therapist about making Alex a Calendar so he sees the days that he has school, and the days that he doesn't, so he do...

Schedules and Robots!!

So I was talking to my therapist about making Alex a Calendar so he sees the days that he has school, and the days that he doesn't, so he doesn't get confused. She asked if I wanted to go even further and make him a schedule of his whole day... and I thought about it... and I figured out that I don't want that. I know that some parents have down on the schedule when the kids brush their teeth when they can play.. and that to me is so insane... when do they have time to be kids??

Yes, they are special needs, but they understand, they comprehend what is going on, they even use their disability against you lol i mean Alex is extremely bright and very independent, why would I take that away and make him into a robot, control everything he does and everything that happens (which btw, you can't control the freaking universe, as parents of autistic kids we need to understand that there will be situations that you will not be able to control) so he doesn't have a meltdown?
 I can tell Alex to get dress that we are going out spontaneously and he would not have a problem, like at all, is the opposite he brings his shoes lol why because I know that there are situations that we can not control and if he gets use to it then there is no problem.

We sometimes make it harder for our selfs, my mom has a saying that routine makes the monk, whatever you get him use to, is whatever he is going to be familiar with and comfortable with. Why schedule him to death and not give him time to be a kid?? because it makes it easier on you?
 for kids that have a social disorder they usually crave being around other children and around people, at least Alex does, so taking him to the park unexpectedly is a treat to him not chaos cause its out of his schedule..you know... like a regular kid!

I know when my son needs time to adjust and to feel comfortable, I know when I need to back up, I am pretty good in foreseeing a meltdown and I try always to prevent it, with a soothing voice and constant reminder that i am here and that everything is alright. I try not to panic or get upset.. why? cause they feel everything you feel, you know when a blind person can hear better than anyone else, is because they develop their hearing more to make up for the lack of sight, well I strongly believe that my child has developed more his instincts because of his lack of communication, so he picks up from me and his environment.

I try to keep calm, if something doesn't go according to "plan" which in my world it never does lol, I keep my self under control so he doesn't feel out of control. Sometimes I think that parents do more harm than good sometimes and they over work themselves and they over think everything to death, they don't relax so by the time their child is 10, they have nervous issues, panic attacks and everything else. Its not worth it I think, if you go with the flow you will get more results and a happier child.

Friday, March 16, 2012

Living with Autsim: Living with Autsim: Group Friend!

Living with Autsim: Living with Autsim: Group Friend!: Living with Autsim: Group Friend! : In group they encourage parents to become friends so we can have a support system. Its great because we ...

One Simple Act of Kindness... plz watch!!

I saw this video on CM and I took  it LOL so please watch, it is a beautiful video and a beautiful story and I really hope and wish that my son finds someone like this one day...

Living with Autsim: Group Friend!

Living with Autsim: Group Friend!: In group they encourage parents to become friends so we can have a support system. Its great because we get to talk to people that really kn...

Group Friend!

In group they encourage parents to become friends so we can have a support system. Its great because we get to talk to people that really know what we go through, and that understand. Marianne is one of those women that is in group with me, and she read something that she wrote about her son, and I asked her why she didn't blog, and she said that she didn't know how. So am going to teach her how to do things because I think she is a great writer and she totally understands her child and what Autism really is. I copy and pasted what she wrote about her son so you guys can read it as well.

His hands are flapping, his body rocking and spinning, his head is shaking/nodding repetitously-
 Noises come from afar-airplanes, police sirens, car alarms, loud music and so much more
His eyes are filled with sadness, scarce and uncertain expressions-all he wants is to be understood
People are pointing, kids are laughing and his voice is unheard-he just wants a friend...
Change all around him is surfacing, how can I stop his fears? Where is his mind going?
He may have words but still not clear-feeling confused but I keep him secure-
Why must they mock me for trying to keep him safe? Half the time-they do not even know his name
He is a child with so much ambition and ready to explore-everything he can to further his future
To not to understand his needs, his way of life, only hides your insecrutites or understandings.
He may scream at times to get  his point across-throw down his toys or want his own routine-do not look at him as being inapropriate; just see him as a child who is trying to express who he is the only way he can at hand.
Too many times others, stare and make judgements on children and how he or she is raised-but do not take enough time to understand those children with different needs feelings-they just pass them by. Not even thinking of anybody but themselves at the time-there are those who do reach out and  want to lend a hand, but sadly it is a small number of them. When we take time out to just say "hi how are you"? those words to one person can speak volumes if you are also willing to hear their stories too. Be a willing heart, be understanding to those parents struggling in difficult challenges, be open minded to those around you-only takes a minute to say "hello".

Monday, March 5, 2012

Living with Autsim: Parent Group Session

Living with Autsim: Parent Group Session: Today was the first parent group session for parents of Autistic kids. And it was great. It felt soooo good to talk to women that totally un...

Parent Group Session

Today was the first parent group session for parents of Autistic kids. And it was great. It felt soooo good to talk to women that totally understood what you were going through, and that honestly have a good sense of humor about it.
We talked about sensory issues with each of our kids, of dentists who treat autistic children (which I got a name and an address, i am going to look it up because the school will ask for it this year).
We talked about how we are treated in public with our kids, how people have no idea what we go through when we are in a public place and our kid is having a meltdown because its too loud, or the lighting is wrong, or they want something that they can't have. And we get the looks "your a bad parent" look that is really annoying. I pick it from my son, if he doesn't care, am not going to care why or when other people look at him... i have no shame LOL

Its incredibly comforting that I am not alone. That there are people that are going through the same thing and sometimes they are worse than you are. Its great to express all the headaches and the joys of your child, even tho they are not the same cases or one is more advance than the other. I love this group sessions because you get to learn what other parents are doing that I might want to try, or give your opinion on what is going on with their kids, without "you have no idea what your talking about" stare. Plus, i can not imagine talking about sensory issues to a parent of a regular kid, cause the truth is, unless you research and learn about it, or you live it like many of us do, you have NO IDEA.

Tuesday, February 28, 2012

Living with Autsim: Autism not diagnosed as early in minority children...

Living with Autsim: Autism not diagnosed as early in minority children...: Ok so I have been reading on Twitter and on the news how minorities are being diagnosed later than white kids.. http://abclocal.go.com/ktrk...

Autism not diagnosed as early in minority children... Wth??

Ok so I have been reading on Twitter and on the news how minorities are being diagnosed later than white kids..

Seriously is not enough that we have to deal with the diagnosis of Autism and now we have to make it a racial issue?? The problem I don't think is the race of the families, I believe is on the doctors. I have encountered several overbearing and condescending doctors, who don't listen to you and give you the run around.

Because for some reason, there are some doctors who don't listen to the parents (the ones with the child 24/7) they just believe what they want and don't even diagnosed the kids because what they believe goes.

When Alex was 1 1/2, the neurologist told us there was nothing wrong with Alex. That people were wrong to want a child that age to follow rules and to even listen to parents, basically he said that Alex had the terrible two's... we have been having the terrible two's for a while now by his diagnosis...

So please parents, you know your child best, if you think there is something wrong with your child and your doctor is not listening go for a second opinion, a third a fourth, these is the life of your child especially if you suspect he has special needs.
It does not matter what race you are, you have to make your doctor's listen to you!

Thursday, February 16, 2012

Living with Autsim: Emotional Connections

Living with Autsim: Emotional Connections: I went to a meeting with a new program in the community program that Alex participates during the school year and during the Summer. And thi...

Emotional Connections

I went to a meeting with a new program in the community program that Alex participates during the school year and during the Summer. And this new program called IMPACT which will connect me with different therapies and different programs including Michelle P. Waiver (if you don't know what or who Michelle P. Waiver was, google it) .
We were discussing how I "deal" and "cope" with Alex, and he mentioned something interesting, that I think people don't understand. He said that most parents of children with autism, the most difficult part that they go through is "not having an emotional connection" with their child. ???? what? Yes, Alex lacks basic understanding of emotions, he doesn't understand why your crying, he doesn't get basic humor, he will never understand sarcasm (poor me), but just because he doesn't understand it, doesn't know he doesn't feel it.
Everyone expresses emotions in different ways, so do they. And it sooo ironic to me that I have a child like Alex. I grew up, basically trying to shut down human emotion because it was better that way, logic was better than feeling the disinfection that was going on around me. (I had a difficult childhood) It was better to separate emotion from every day living... and trust me I accomplished it, in fact if it wasn't for my brother, i truely would have no idea how i would have dealt with everything... hopefully he won't read this cause he'll gloat...lol so its easy for me to separate emotions from my daily life, and its so IRONIC that I have a child like Alex, he naturally does what I learned to do lol and I connect with him because I know that in his head, things don't work in an emotional level.
I have an emotional connection with my child, it might one sided lol but every morning Alex comes to my bed so he could snuggle with me, that's my emotional connection, I take my emotional need from stuff like that and it takes me closer to him. I don't struggle with the emotional side, because I take what I need from moments like that, and thats it, take what you can get. I know he loves me, I know he cares, but he can't tell me, but i am sure as hell he lets me know with actions like that.
Basically the moral of the story kids is, that you have to understand your kids, somehow, get inside their heads and get to know them, its hard as hell when they can't speak, but they show you if ask the right way.

Tuesday, February 7, 2012

The Difference between Autism, Aspergers and PDD-NOS...and new changes by the APA

I know many who get confused, or just don't know. I will tell you the difference, either way is my opinion that each child is special in their own way, it doesn't matter what spectrum they are on, or if they are not in any.


- To have Autism, a child struggles with social delays, language delays, and repetitive or obsessive behaviors.

Asperger Syndrome

- To have Asperger Syndrome, a child has social delays, later delays in communication and language usuage (without early language delays), average or above intelligence and obsessive behaviors.


- To have PDD-NOS, means a child has social and communications issues, but does not fully meet the criteria for either of the other two diagnoses.

Now, I gave this definitions because there is a new evaluation being done by the American Psychiatric Association that will re-define the diagnosis in the Statistical Manual of Mental Disorders, which is used to determine treatment, insurance coverage and access to services for a variety of mental illnesses.
Basically what the "Experts"  will do is exclude Asperger's and PDD-NOS from the Autism Spectrum. They believe that this changes will probably lower the amount of Autistic diagnosis, which has been rising sharply in recent years.
So the so called "Experts" are going to set stricter set of criteria's when diagnosing, the person would have to show three deficits in Social Interaction and Communication and Two Repetitive behaviors.

  What bothers me about this, is that a lot of children will no longer get as much therapies, nor as much help because they will not "fit" the criteria. Read the definitions and you will see and understand that no matter what this kids NEED speech therapies, behavior therapy, IP therapies, all of this kids need groups so they can socially interact, so they can learn how to interact, because unlike regular kids, these kids need to be trained, and educated in social interaction. We naturally learn how to act in public, what to say in front of people, these kids DON'T, they just don't know, they don't learn like we do. (Perfect example, watch The Big Bank Theory, and see how Shelton acts, see what he says and the things he does and you will understand)
Also, a huge issue is Communication problems, just because two of this two can speak doesn't mean they actually know how to communicate, in fact, most regular adults can't freaking communicate LOL what makes you think they CAN. Some of these kids you have to say what you actually mean, you can't be sarcastic because they can take it literal sense, those are communication issues that this so called "Experts" are overseeing.

Friday, February 3, 2012

Living with Autsim: Carly

Living with Autsim: Carly: Ok, so I was on CM yesterday and someone put this video up and I was absolutely blown away by it. Carly is a young teenager from Canada...


Ok, so I was on CM yesterday and someone put this video up and I was absolutely blown away by it. Carly is a young teenager from Canada, who has Autism, well what the "experts" define as "Severe Autism".
And I watched it, and I made my husband watch it, and then I made my MIL watch it, and I put it on FB and I got a lot of positive responses.
And after watching it, I looked at Alex and I almost said "Shit" and then I realized... his actually most likely listening to everything I say. And I know he does listen, he is responding very well to everyone, following directions and everything, so now, this video kind of proofed what I have been feeling for a long time.
Just because he can't speak, just because his outputting noises, it doesn't mean his not listening to me, and you actually see the things that she talks about in Alex. The outputting noise, the hand flapping, everything that he does, he does for a reason, and I always understood, that there were some things that he could not help doing, so I would leave it alone because I am not going to fight something that he himself can't control, at least that was my way of thinking, and it turns out... i was half way there.
Now we see Alex in a whole different way, I told my husband, once you see this, it will totally change the way you think about Alex, and when he was done watching it, he was like, wtf? he was like your right!
We now see him in a different, more positive light. And it gives us hope, no one knows if what happened to Carly is something that is standard, or something she can only do, but it gives us hope that one day he will pick up the computer and type up something, anything. Or that at least, he will find a way to communicate somehow.
Anyways, watch the video guys, its something that we all have to celebrate.

Thursday, February 2, 2012

Police Killed a 15 Year old Autistic Kid in Chicago!

So I was on Twitter this morning and I have @earlyautism on my twitter and they give news and info on a lot of Autism things that are going on. And today I saw something that totally worried me and I thought it was so badly handled.

BTW here is the link to the actual article. http://www.chicagotribune.com/news/local/ct-met-calumet-city-shooting-20120202,0,6999817.story

An autistic 15 year old was killed by Police, he was diagnosed with Asperger's when he was 9. Now this is not the first time that the police has been called in regards to Stephon Watts. Steven Watts (his father) mentioned in the article that I read that he was advised by the child's doctors and social workers to call police every time Stephon would become agitated, because Stephon was 5'10 and 220 pounds (at 15) and he has punched his mother in the face before, and the cops have been called at least 10 times sense 2010.
So the Chicago police knew that that house was a red flag because there was an autistic child living in that house with past insidents.
The situation was, Stephon did not want to go to school and so his father took away his computer and took it to the basement, Stephon was at the moment of the incident in the basement with his father when the police came, Stephon was holding a butter knife (yes, I said a BUTTER knife) and so the cops felt threaten and so they shot him twice and Stephon was killed.

So there is a few things that I would like to point out, the Chicago police had no idea how to deal with a child with autism (NONE WHATSOEVER) so obviously they are not trained to deal with the mentally disabled nor with autistic children, that's sad, and something that especially police officers SHOULD know, and know how to handle.
Another, if the police knew that the child had Autism and that he became violent and that that property had a red flag because of past incidents.. why not handle the situation better?? why not disarmed the kid and calm him down by holding him down on the floor? why was that not an option?
Another thing that worries me from a parent point of view, this kid was 15 years old, and he was 5'10 and 220 pounds... my son is 4 about to be 5 and he is 3'1/2 feet tall and 58 pounds and extremely strong... what the hell am I going to do? and am like 5' ft.. well my driver license says 5'2.. what am I going to do when his older and bigger??

Wednesday, February 1, 2012

Living with Autsim: Therapy Session with MIL.

Living with Autsim: Therapy Session with MIL.: Today was the first session with my MIL and the therapist Kourtney and a translator. Side note, I could have done a better job at translatin...

Therapy Session with MIL.

Today was the first session with my MIL and the therapist Kourtney and a translator. Side note, I could have done a better job at translating than this lady, for real, I understand that she did not understand what the session was about, but she was mainly misinterpreting was Kourtney was saying, whatever, the point was with my help the damn point got across.
So, mainly what Kourtney was telling her was that she needed to do in steps if Alex had a meltdown. And to also start setting boundaries with him.
We also explained to her that when Alex grabs my hand, he lets me know what he needs or wants, that I don't just make it up (Alex grabs my hand and my MIL asks me whats wrong, at first I would tell her idk, then it was hold on, it came to a point that I would not answer) so now she knows that if Alex grabs her hand she needs to let him show her what he wants or what he needs.
Also if the boundaries that she sets is not working with him, then someone needs to step in and help. Also that she needs to be firm, even in the face of a meltdown, and if she can't handle the meltdown, then she needs to walk away.
The first question that was asked "how do you feel about the situation with Alex" her response was "its sad, because no one wants to deal with a special needs child" and she was honest, and she expressed her feelings. Until finally we got to the core of the problem... she feels bad, it hurts her to see that he is not understanding or coping with a situation and his having a meltdown, it gives her anxiety when he has anxiety, but Kourtney told her that she had to take a hold of herself and use self control.
A thing with Alex, you can't show a moment of weakness, no moment of hesitation, he sees it, he smells it I swear LOL and he knows right now who the weakest link is in the house is, he knows when your giving in and how to do it, he has actually sat down next to his father and screamed his head off knowing that daddy gets desperate, with me he has tried every thing, but Mommy don't play that!
So, we are going to have another session next week, but with another translator... hopefully.

Tuesday, January 31, 2012

Living with Autsim: "Latest Work"

Living with Autsim: "Latest Work": Ok, so I have mentioned before that I am a member of Cafemom.com and that I do belong to support group for Mother of Autistic Children, and ...

"Latest Work"

Ok, so I have mentioned before that I am a member of Cafemom.com and that I do belong to support group for Mother of Autistic Children, and a few weeks ago this mother, her screen name is destiny29, and she uploaded an amazing picture that she did with watercolor to describe her child and what he likes. To me it just shows not only the fact that as Mothers of Autistic children we are sooo intoned with our kids that we see them differently, we understand them completely, but that this lady has an amazing talent!


So above is a link to that cafemom.com post to show you the picture that destiny29 did, I think its great, she has an amazing talent and complete understanding of her child.
And she actually does pictures for others if anyone is interested, she just needs a picture and she needs to know what your child likes and she does it for you.
Please check out the link and it hopefully shows you a lil bit of what Autism is and how the mothers see it.

Friday, January 27, 2012


There has been a lot of changes in our household starting the new Year. My MIL has moved back in and Alex has been showing some behavior issues, because of the changes.
And I am proud member of Cafemom.com and I am a member of two support groups for mothers of autistic children, and I asked for advice regarding this issue. And it brought to my attention that most mothers of autistic children work from instincts, it has become very hard to explain things to my MIL because of the fact that I can not explain what I do every day because I just do it.
Many mothers on Cafemom.com and in those specific groups, work with their instincts as well, because that's the only way we can understand them, and thats the best way to help them.
I have talked to the therapist, and like i have said before, i have already set up a therapy session with a translator for my MIL because I can not explain half of what I do with Alex.

My mother would call this mother's love and mother's intuition, and she is right, I have developed a sixth sense only for Alex, my husband actually thinks that I have eyes in the back of my head, but I don't, I can literary smell if Alex does #2 from the living room, I know where he is and what he is doing when he is too quiet (naturally with any child, if they are too quiet, there is something going on, or their sleeping).

And going to Cafemom today and reading some of these mother's responses, and we all have that in common even tho our children are totally different. We work on instincts, we do what we can everyday but we can't actually explain to another human being what it is that we do, I personally can't, especially to a person that has no idea what Autism is. I mean, you can read and research Autism all you want, but theory is always different than practice, you have to be around Autism, you have to open your self mentally to be able to understand, and one thing that is very important especially with Alex, emotion has to be separate from logic, Alex does not respond to emotion, he doesn't know how to read it, he doesn't know what the hell it means, what works with him is logic, is either black or white, i am not saying you can't hug or kiss him, it just means that he sees it as a game, not as affection, and that is hard enough to deal with, but again, its logic not emotion that is involved.

Wednesday, January 25, 2012

Living with Autsim: Involving MIL into Therapy

Living with Autsim: Involving MIL into Therapy: So, MIL moved in a couple of weeks ago, and we have been dealing with behavior issues sense she moved back in, he is acting up, his anxiety ...

Involving MIL into Therapy

So, MIL moved in a couple of weeks ago, and we have been dealing with behavior issues sense she moved back in, he is acting up, his anxiety level has gone up ( and if you know or research autism, you would know that all Autistic children have anxiety issues), so he has gone back to doing things that he hasn't done in a long time. So I spoke to his doc and she told me that I needed to include her in the group so she can understand him more, and so she can get in the same page with us.
I spoke to his therapist and I have an appt set up for next week with the therapist and a translator so we can all sit together and talk. FUN!!
The thing is, she is one of those ppl that she fears what she doesn't understand, except she is not scared, she just feels sorry for him. Last time he had a meltdown, she walked away and the husband found her crying in her room, I understand where she is coming from, really I do, cause I was there, but I didn't have time to dwell on it, I just did what I had to do to get him Help, so right now am a bit inpatient with her, but thats not her fault, thats mine.
So, we have set up a plan for her to follow, so she can recognize things and be able to deal with them.
Truth is, living with Alex is like playing "discover the treasure" all day long, why? Ok, Alex is NON-VERBAL he can't speak, but he can show you what he wants, so half of the time, i don't know whats wrong with him, but I sit and I observe him. In her case, she asks over and over again whats wrong with him, it has come to the point that I stopped answering, not trying to be rude, but I just can't handle the stress of dealing with him and with her and her questions, I just can't, I am a person that can do one thing at a time, and I like to focus on him only when he wants me to figure out something, call me creazy!
She would have to learn how to observer him, and identify the object or his needs, and then address it, if is a negative, you tell him NO, and if she can't handle it, she has to walk away.
So, next week will be eventful to say the least. FUN!

Living with Autism!

Hey, am a SAHM to my wonderful 4 year old autistic son Alex. I live with my hubby Laz and my MIL Betty. Well now that we know all the players I can start with story.

Alex was a wonderful baby, he slept through the night sense he was 4 1/2 months. He would look you in the eyes and gurgle when you spoke to him. But then, by the age of 1, things changed, he stopped responding, he stopped making eye contact. He wasn't hitting the milestones, we took him to the pediatrician, it was acknowledge that he was delayed, we took him to a neurologist, he said he was fine, we did MRI's, we did all kinds of test, including hearing test (4 of them in fact). And everything came out normal. We knew something was wrong, my mother, Izzy, she was a special educations teacher in Cuba, she kept telling me something was very wrong, we got him speech and occupational therapy but it did not seem to help much. He was 2 years old and Alex wasn't talking. His meltdowns were explosive, it was a very confusing time.

As a parent, you feel helpless, you don't know whats going on, you don't know what to do, how to help him. Especially when you have a neurologist telling you that he is a normal 2 year old, that he is just going through the terrible 2's. Its depressing, you go through the guilt, was it your fault? did I do something wrong? Was it that chicken that I ate while I was pregnant that didn't set well with me? was it the coffee that I drank? is my genes? then you move on because you have to, because you wake up in the morning and think, how can I make this day better for him? and you realize that he is who is, and no matter what happens Autism does not go away, there is no cure. Is like trying to cure homosexuality, you can't, they are born that way, and so was my son. So now I try to help him.

I moved to KY from FL, I got him into the school system here, we did various evaluations, we got him into the right program, into the right school, the right therapy. Right now he is only in pre-k, and only 4, I have a long road ahead of me, but you know what, I have discovered something about myself and my family. We don't give up, we keep on going, we don't stop, and that makes us stronger.

Next, when he turns 5, I will put him in the Michelle P Waiver, for those of you who don't know, its a programs only in the state of KY for kids with autism, they offer more therapy, more activities for him, they offer in home care, out home care and whatever else he needs.


Everyday is a struggle, but everyday is a day of discovery, of constant joy, of knowing that we are doing the best I can.