That's me, standing partially on a soccer field biting my nails. I never bring a chair, I have never been able to sit down. That's me, holding my head in my hands, then moments later holding my crying sons head in them also.
He wanted to play a sport and soccer is what he chose. Coming out of an amazing year in Kindergarten and a relatively calm summer, I chose to put him in an intermurals team that was for typical children. I may have made a mistake.....no, I made a mistake.
That's me running between two fields, one with my four year old daughter and the other with my son. That's me missing my daughters first goals because I have to wonder if my son will hit yours. This is me looking like a basket case on the sidelines crying, crying because my son can't process and handle his emotions when your son says he's stupid.
There are days I wish I could hang a sign around my neck, or our necks that say "my son has Autism....yes i know he doesn't look it" (whatever the F that means) . I use to think the sticker on my car was obvious enough but, its not. You see my son, he looks like your son...except mine is talking obsessively about numbers. My son is socially awkward and anxious and your son picks that up.
That's me pacing up and down the sidelines, I see whats going to happen before it does. That's me yelling "Frankie!" . I'm sure half the parents think I'm some psycho helicopter parent, I don't want to be. I want your kid to stay safe, my sons new response to your child's unkind words it to kick him.
Your kid kicked my kid....because my son is "weird". You respond, "just stay away from him, stay away from that kid". That's me wiping away my tears. As much as bullying words hurt, parents telling their children to stay away from my son, that hurts just as much. That's me dragging my sobbing son off a soccer field for running full force into another child....for no real reason. Maybe you think I'm overly strict, maybe you think I'm being too hard on him. That's me dragging him off early because i can't stand to cry in front of you all.
That's my son.....walking to apologize to your son....who ignores him because he was instructed to stay away from that kid. Mine stands there defeated and yells, "I tried, they walked away"
That's us....walking off the field, defeated. I waited to cry till I thought my son couldn't see me. He saw me, he began to sob himself. He made promises I know he can't keep, we have one more day of soccer, he made me promises.
The next time you see people like me, a family like us.....give them the benefit of the doubt. Don't assume that child is bad, don't assume that mother is incompetent, teachyour children to be kind.
One....More.....Practice......God, let him get through that last practice, I'm going to have a positive attitude, because that's just me.
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Sunday, November 9, 2014
Tuesday, October 28, 2014
Soccer
Yes.....Soccer. That's the title.....Nothing fancy. This is what I base my come back on.....Friggen Soccer.
I left blogging for a little because I was tired. It wasn't some move to gain sympathy and cries to not go like some others do. I was just tired and out of material. Frankie did amazing in Kindergarten, and that basically left me with no material. Its hard to connect sometimes with other special needs families when all you say is "He's doing AMAZING" blah blah blah
Well thankfully for all of you Summer and the first few weeks of school have been less then AMAZING! Yay Material back!
I thought it was time....it was time to get him involved in some typical kid things. I right away new we were doing cub scouts and that sign up was done. Then came a night in August while drinking my second glass of wine and watching some terrible reality show about parents who put their kids in too many sports, I decided I was signing BOTH my kids up for soccer.
The next morning, I confessed to my husband that in my buzzed state I proceeded to take his credit card from this wallet and sign our kids up for soccer.....oh and not the special needs kind, no no, the typical kind.
So Saturday and Sunday mornings I was to report to the soccer field....3 kids in had, 2 in different age groups on different fields. My daughter cried the first 2 weeks....then became a Super Star
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| Hot Pink Socks is mine :) |
Its hard when parent volunteers are coaching. They don't know what a child on the spectrum is like....have no clue how to deal with him. I have this huge sense of guilt as I leave my 4 year old on a field across the grass and hover over my 6 year old praying he won't hit someone.
Last week I made a public wish. I wished that we could make it through a weekend of soccer without one of us crying. Saturday is practice and luckily he likes just practice so we made it through all tear free. I woke up Sunday morning, started at the ceiling and thought....I can't do this, I can't do another Sunday of madness.
Soccer was at 11 and I'm pretty sure I didn't decide till 10 that we would go. I knew they might be doing pictures that day.... if you know me, I love a good picture and so we got ready. I did the whole talk in the car, "hands to ourselves, nice words only, if someone says your a loser say I don't care".......I do this everyday. My stress turned to thankfulness when I saw the guy who runs the soccer club was working with Frankie's group. I gave him the quick heads up on Frankie's previous weeks. He put Frankie in goal (F WORDS FFFFFFF)....weeks prior Frankie had been in goal and had a meltdown. To my surprise Coach K actually got in the goal with Frankie and helped him out, teaching him what he had to do instead of just letting him stand there. Coach also made HUGE...and I mean HUGE deals out of what Frankie accomplished, the positive reinforcement was over the top, even in my book. He stayed in goal, he liked it and hour later he was smiling for his team photo.
My wish came True. This weekend there were no tears at Soccer....Hallelujah. Only 2 weeks left!
Tuesday, January 22, 2013
I push my kid....dont worry, not physically!
This would be my bad a** self many moons ago....ok maybe 6 years ago
Skinny and Athletic....imagine that. I think I stared Skiing around 11....then the winter of the year I was 12 I think I went skiing nearly every other weekend. When I was 15 I decided to learn how to snowboard, well because that's what all the cool kids were doing :)
So that's the back story. My mother and stepfather go skiing almost every weekend. How a woman born in Cuba (my mother) came to be a skier is another story, but it was apparent that my mother has been waiting to see Frankie ski since he was in utero.
When the weekend came that we would bring Frankie to Vermont was approaching, to say I was anxious would be an understatement. My skin broke out,I was moody and semi insane. With Frankie you can do a social story but God Forbid you say we are going skiing...he must go NOW. So For two days prior to going....he had to go NOW.
Now I might get some Shit (sorry have to use it) for what I am going to say. I HAVE to push my son. I know he has Autism, I know things stress him out, I know he is sensitive but truth is if I don't push him he will sit on the couch the rest of his life watching TV because it will be easier then getting up. Say whatever you want, but I know because I suffer from the same nonsense. When my anxiety gets bad I have to be forced to do things, maybe I had a good time, maybe I did not, but I got it done.
We drive the 4.5 hours to Vermont. The big guy is amazed by the snow. The last time he saw real big amounts of snow was Dec 26th of 2010. There was no snow in NY last year so it was like seeing it for the first time! My first mistake that Friday evening was not pushing him to get his boots sized. The plan had been to get to get there and have his ski boots fitted and rented but of course being that we JUST got there, the transition to getting back in the car made him meltdown. Say what you want but I should have pushed him through it, the discomfort of that transition would have made other things a lot easier the following 2 days.
The following day we went up to the mountain in the afternoon after an whole morning of meltdowns because snow is cold and the house was different and there was no cable and the netflix didn't work and we weren't going skiing NOW. I could have went that morning to bring him skiing but he was just getting upset left and right over everything it wasn't going to happen. At the mountain he decided he needed to go skiing that SECOND and needed the biggest skis that had.....meltdown because he couldn't have the biggest ski's.....bigger then skis I could even use lol. I thought bringing him to the mountain just to see, to get him ready for Sunday morning would be a good thing, that he would have slowly adjusted.....NOPE...needed to SKI NOW SKI NOW!
This is us after going to the Candy store (bribery).....He still needed to Ski right then and there. Also that is my husband....wearing our little guy in the Ergo.....gotta love a daddy wearing a baby!
We managed to get through Saturday with promises of skiing in Sunday morning.
Sunday morning, Frankie needed to go skiing NOW
This is us in the room where you can put on your boots. We walk in and Frankie is adamant about getting his Ski's NOW. Well....first paper work "I NEED MY SKIS".....then some boots "THESE BOOTS ARE TOO HARD, I CAN"T I NEED SKIS"....Then get Skis " THESE SKIS ARE TOO LITTLE THEY ARE FOR BABIES"
I'm not sure if most would quit by then. Maybe people thought I was cruel to push him....but if my butt got on my ski clothes and all my equipment out after 6 years.....he was going skiing.
This is what a four year old on Skis looks like. Boots, ski's, helmet, goggles helmet and awesome harness so mom can carry you around. Can you see HOW BIG of an event this can be for a kid on the spectrum???? I think he was crying a little bit after this because now that we were on the mountain he wanted to go on the BIG SKI LIFT and not on the little bunny slope "magic carpet". So again I had to force my child up a small ski lift as he screamed that he need to go on the "BIG HAND GLIDER NOW"
Now after a morning of screaming he has decided he want to go up the BIG "magic Carpet"
We went up a few more times. After about an hour he was pretty much done, which was fine with me, I was happy he did it for more then 10 minutes. I asked him if he wanted to do it again and he said only if we go on the "hand glider"(aka the chairlift that goes higher up the mountain). I then asked if we could bring Lia next year....he said no, this was just for me and Mommy.
Maybe people think I'm terrible for pushing him, for making him deal with things that make him uncomfortable. I wondered if people would say, just let him be himself, not be what you want. Well If he never wanted to Ski again then I'm ok with that, but he has to try. That's all, call me crazy.
Sunday, November 6, 2011
The Special Mother by Erma Bombeck....for you Moms
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Thursday, August 18, 2011
Behavioral Regression Anyone?
Today was a mixed day. I will start with the good! LP has become less echolalic I have noticed. For a very long time he didn't answer, he just copied what you said. My dad stopped by and was drawing pictures for LP. Grandpa was making elephant noises and LP said " your funny Grandpa Joe!". Sooooo Appropriate!!! He has been saying funny things lately, like on Monday his teacher wore her hair curly like my sister in law does.....LP pointed at her and said " You look like Aunt Lisa!!". We are working on tons of emotions, but he still thinks it's funny when mama is mad. I try to make a mad face when I'm super pissed......he just laughs.
Now the bad.....ok not bad just inconvenient.
We went school shopping at Kohls......and like a typical 3 year old, my son learned to hide in clothes racks. The issue is my son does not understand to come back, nor does he care when you do that whole " I'm leaving you here, bye". He just screams back " bye mama". Out of the stroller he was running away, in the stroller he was hurting his sister. He just laughs when she cries, he hits her in the head, pulls on her legs....it's endless. I managed with many looks and nervous smiles, at one point I even blurted out he is autistic to a stranger because I wanted her to feel bad for me. That's so lame, but we were on line and again he was kicking his sister, the lady didn't even say anything, but I had to say something. Next stop.....supermarket. He has been doing so much better, but not today. I asked him if he wanted to push the cart or sit."..he picked push, fantastic. We go to produce and pick out what we need.....and again he flips out in the freezer section. He had a sweater, he wasn't cold!!! He runs away, he ran away again in the store, if I put him in the cart he tries to jump out, he ran head first into a ladies cart.....craaaappp. People say to leave him home, but I want to expose him to as much normal things as possible, but I find myself getting aggravated. I have been a hermit for months, and I'm trying to be brave and venture out and do typical things, but its so much work.
The hardest thing is the nervous looks. Today I felt the women were better, some older men looked annoyed. I younger guy laughed and told LP he was awesome as he dumped a bag of grapes all over the dairy aisle.....I ran ay from that spill haha. I was in a mode that I wanted someone to say something so I could yell at them. His active level is off the charts and I just have no idea how to lower it.
He really is the sweetest boy, I feel horible when I am so frustrated. My mother in law once wished upon my husband that our child would be like him if not worse as a child......her wish came true. We are in such a regressive behavioral rut that it's painful.....he now can talk, but he won't listen.
Now the bad.....ok not bad just inconvenient.
We went school shopping at Kohls......and like a typical 3 year old, my son learned to hide in clothes racks. The issue is my son does not understand to come back, nor does he care when you do that whole " I'm leaving you here, bye". He just screams back " bye mama". Out of the stroller he was running away, in the stroller he was hurting his sister. He just laughs when she cries, he hits her in the head, pulls on her legs....it's endless. I managed with many looks and nervous smiles, at one point I even blurted out he is autistic to a stranger because I wanted her to feel bad for me. That's so lame, but we were on line and again he was kicking his sister, the lady didn't even say anything, but I had to say something. Next stop.....supermarket. He has been doing so much better, but not today. I asked him if he wanted to push the cart or sit."..he picked push, fantastic. We go to produce and pick out what we need.....and again he flips out in the freezer section. He had a sweater, he wasn't cold!!! He runs away, he ran away again in the store, if I put him in the cart he tries to jump out, he ran head first into a ladies cart.....craaaappp. People say to leave him home, but I want to expose him to as much normal things as possible, but I find myself getting aggravated. I have been a hermit for months, and I'm trying to be brave and venture out and do typical things, but its so much work.
The hardest thing is the nervous looks. Today I felt the women were better, some older men looked annoyed. I younger guy laughed and told LP he was awesome as he dumped a bag of grapes all over the dairy aisle.....I ran ay from that spill haha. I was in a mode that I wanted someone to say something so I could yell at them. His active level is off the charts and I just have no idea how to lower it.
He really is the sweetest boy, I feel horible when I am so frustrated. My mother in law once wished upon my husband that our child would be like him if not worse as a child......her wish came true. We are in such a regressive behavioral rut that it's painful.....he now can talk, but he won't listen.
Labels:
ABA,
ASD,
aspergers,
Autism,
discipline,
parenting,
regression,
special needs,
spectrum
Wednesday, July 27, 2011
Playdate or Play Disaster?
Ahhhh, this is my son at around 18 months.....around the time I believed that he had started the terrible twos early. I think this may have been one of the last play dates I went on.....that is up until recently.
I remember being afraid to bring him places, afraid of what he might do or react. At around 18-22 months he was a huge pusher/hitter. Unless I was literally on top of him, I ran the risk of him hurting another child. I always felt like other moms thought I was blowing them off, and I suppose in a sense I did. I would "forget" or make up excuses all because I didn't want people to look at me and think I was a bad parent, at that point I thought I was.
I can remember one time I was brought to tears because I thought my child must be insane. I met up with some friends at a local strip mall to have breakfast and go baby shopping (I was about 5 months pregnant at this point). LP must have been about 21 months old and for some reason i felt like it was a good idea to take him out of my car with out his stroller. I suppose I wanted to look normal and stupidly thought my son could handle walking. So walk we did and we had breakfast.....well I had breakfast and he stared at some birds and ran around and ignored everything I said. I could see the disapproval in the eyes of my friends, I heard then implying I was not putting my foot down and that my son just needed tough love. After we ate I wanted to go get the stroller because the idea of walking around with this kid seemed impossible. Once again I listened to others who said my son needed to get over it and i had to stop babying him. Well let me tell you that's the last time I don't trust my instinct. Here I was, pregnant in the heat, dragging a screaming toddler who had no language and no way to communicate to me. He tried to run off in the parking lot, he slammed his head on the floor.....and the whole time I was stared at, everyone thinking I made my child like this. It was the first time I felt so embarrassed at my child, if I had known the problem I wouldn't have been, but at that point I thought it was all my fault and that my child was horrible. I did not leave my house to be with people that weren't family for another 7 months.......because 7 months later I found out this wasn't my fault.
Things are better now that we get ABA, I can take my boy out with friends, I can take him to the park. Its not always easy and sometimes I have to leave. For those who are just starting this journey, always remember to trust your gut. Also remember to tell people what they can do with their opinions. A lot of the mourning and crying I did was over the fact that i listened to others and believed I had a demon child and treated him as such. I'm not proud of secluding him or myself, I'm not proud of how I treated him. I felt I hurt him those months where I resorted to punishing him and spanking him because that had to be the way if he wasn't responding to everything else.
If you are the parent, remember what i said, listen to yourself forget everyone else and take you kid out to see the things they love. If they melt down, if someone looks at you or comments, tell them where to go. And if you are one of those people who is in the store or the park that wants to open their mouth about how someones kid is acting, shut your mouth and turn your head. Even if that persons kid does not have special needs.....no one wants to hear how you think they suck at parenting.
I remember being afraid to bring him places, afraid of what he might do or react. At around 18-22 months he was a huge pusher/hitter. Unless I was literally on top of him, I ran the risk of him hurting another child. I always felt like other moms thought I was blowing them off, and I suppose in a sense I did. I would "forget" or make up excuses all because I didn't want people to look at me and think I was a bad parent, at that point I thought I was.
I can remember one time I was brought to tears because I thought my child must be insane. I met up with some friends at a local strip mall to have breakfast and go baby shopping (I was about 5 months pregnant at this point). LP must have been about 21 months old and for some reason i felt like it was a good idea to take him out of my car with out his stroller. I suppose I wanted to look normal and stupidly thought my son could handle walking. So walk we did and we had breakfast.....well I had breakfast and he stared at some birds and ran around and ignored everything I said. I could see the disapproval in the eyes of my friends, I heard then implying I was not putting my foot down and that my son just needed tough love. After we ate I wanted to go get the stroller because the idea of walking around with this kid seemed impossible. Once again I listened to others who said my son needed to get over it and i had to stop babying him. Well let me tell you that's the last time I don't trust my instinct. Here I was, pregnant in the heat, dragging a screaming toddler who had no language and no way to communicate to me. He tried to run off in the parking lot, he slammed his head on the floor.....and the whole time I was stared at, everyone thinking I made my child like this. It was the first time I felt so embarrassed at my child, if I had known the problem I wouldn't have been, but at that point I thought it was all my fault and that my child was horrible. I did not leave my house to be with people that weren't family for another 7 months.......because 7 months later I found out this wasn't my fault.
Things are better now that we get ABA, I can take my boy out with friends, I can take him to the park. Its not always easy and sometimes I have to leave. For those who are just starting this journey, always remember to trust your gut. Also remember to tell people what they can do with their opinions. A lot of the mourning and crying I did was over the fact that i listened to others and believed I had a demon child and treated him as such. I'm not proud of secluding him or myself, I'm not proud of how I treated him. I felt I hurt him those months where I resorted to punishing him and spanking him because that had to be the way if he wasn't responding to everything else.
If you are the parent, remember what i said, listen to yourself forget everyone else and take you kid out to see the things they love. If they melt down, if someone looks at you or comments, tell them where to go. And if you are one of those people who is in the store or the park that wants to open their mouth about how someones kid is acting, shut your mouth and turn your head. Even if that persons kid does not have special needs.....no one wants to hear how you think they suck at parenting.
Monday, July 25, 2011
Club Spectrum: The Secret Handshake
I think there should be a secret handshake, or maybe a special signal or an awesome hand stamp we can show each other. How many times do you see someone that you know has a child on the spectrum and you just want to yell :I'm in the same boat" and just want to hug that person? I was recently reading a Blog post by Autism Unexpected, where she goes into being at the grocery store and seeing a man with his son who is defiantly on the spectrum. I find it funny that the last two times I noticed kids on the spectrum I too was in the grocery store.
It was only one of those times I actually spoke to a mom, I wanted to tell her she was a great mom, I wanted to say I have one too! She was in the dairy section of the supermarket with her son, I was alone with my daughter, left the boy at home. He was holding an Ipad.....she was reinforcing how great he was doing at sitting quietly. I just wanted to reach out to her, I wanted to say "Hey, me too, I have a kid at home and he is on the spectrum too. Tell me it gets easier, tell me your secret, give me advice". I didn't say any of that.....instead I said "excuse me, where did you get the case for that Ipad" She told me at the Verizon store, I then mentioned my son also had an Ipad....its like you can see the lights go on in someones head when they realize. We talked about how it was such a great tool, how it helped her shop, about her sons behaviors, diagnosis etc. I think us moms long to talk to others like us, its hard, they say we are 1 in 100, but with no obvious hint of a Spectrum Disorder, you can't always see someone like you.
The second time in the store, I didn't see an Ipad, I saw two boys in a cart. One boy sitting quietly and the other verbally stimming, then I heard the words "Quiet mouth"....Whhhaaat quiet mouth! Your kid listens to quiet mouth, crap I'm walking around this store shoving crackers in my sons mouth so he wont grunt uncontrollably! I knew she was like me, I knew they were like us. Once again I wanted to yell, "you are doing a great job, you are a good mom!"
I think we need code word, can I just scream CLUB S and see who turns around? My greatest fear would be approaching someone who's kid isn't on the spectrum, or at least doesn't know it......that would suck. I don't know if I am the only one who yearns to be near other parents on the Spectrum, its probably half the reason I made this blog, but its just nice to have something in common. Sometimes I want that other person to know they are not alone. Maybe one day I will get gutsy and just start talking to all the ones I suspect, but till now, I'll work on our code/handshake.
It was only one of those times I actually spoke to a mom, I wanted to tell her she was a great mom, I wanted to say I have one too! She was in the dairy section of the supermarket with her son, I was alone with my daughter, left the boy at home. He was holding an Ipad.....she was reinforcing how great he was doing at sitting quietly. I just wanted to reach out to her, I wanted to say "Hey, me too, I have a kid at home and he is on the spectrum too. Tell me it gets easier, tell me your secret, give me advice". I didn't say any of that.....instead I said "excuse me, where did you get the case for that Ipad" She told me at the Verizon store, I then mentioned my son also had an Ipad....its like you can see the lights go on in someones head when they realize. We talked about how it was such a great tool, how it helped her shop, about her sons behaviors, diagnosis etc. I think us moms long to talk to others like us, its hard, they say we are 1 in 100, but with no obvious hint of a Spectrum Disorder, you can't always see someone like you.
The second time in the store, I didn't see an Ipad, I saw two boys in a cart. One boy sitting quietly and the other verbally stimming, then I heard the words "Quiet mouth"....Whhhaaat quiet mouth! Your kid listens to quiet mouth, crap I'm walking around this store shoving crackers in my sons mouth so he wont grunt uncontrollably! I knew she was like me, I knew they were like us. Once again I wanted to yell, "you are doing a great job, you are a good mom!"
I think we need code word, can I just scream CLUB S and see who turns around? My greatest fear would be approaching someone who's kid isn't on the spectrum, or at least doesn't know it......that would suck. I don't know if I am the only one who yearns to be near other parents on the Spectrum, its probably half the reason I made this blog, but its just nice to have something in common. Sometimes I want that other person to know they are not alone. Maybe one day I will get gutsy and just start talking to all the ones I suspect, but till now, I'll work on our code/handshake.
Friday, July 22, 2011
Remember You
Remember to take care of yourself.......I am writing this, as I am trying to do this for myself. I'm really trying to practice what I preach.....easier said then done. I've heard this told to me before and I remember rolling my eyes internally and thinking, um ok, you have no idea.
I think what people should explain is that this "you time" doesn't need to be some huge grand adventure. I kept thinking of some big thing I would go do for myself, and I would constantly shut it out, because in reality going to Vegas far far away from my children was never going to happen.
So I did something really little.....I bought a cheap pair of Big Sunglasses! In a Previous Post, I had mentioned I use to have a pretty awesome collection of Big sunglasses. It was part of who I was, part of my identity, I have a big head, so big sunglasses are great. So for $5 I purchased a ridiculously odd pair of floral print sunglasses. It felt goooooood. Oh yea, it was the littlest thing, nothing huge and it felt so good. I wanted to wear them, but it was 8pm so I would look kind of dumb. So I propped them on top of my head and went on my merry way, smile ear to ear, for $5 I got a piece of myself back.
Thursday, July 21, 2011
Stop Spinning!
I don't even know what in Gods name is up with the boy today. Seriously, the behaviors the last 2 days are pure insanity. Many people have told me that when he is learning new things, it won't be uncommon for him to regress in other areas. HOLY CRAP! Here I am hoping that these Omega -3's and vitamins are going to help him out and he is behaving like a nutso......talking in sentences, but acting like a nut. I guess that would prove the theory right, he's talking and having horrible behavior.....before he was being good and just using vocabulary.
He looks at me and says "mama, help me, get juice". Aw how cute! I get him juice and I go about my scrap booking. I hear him drinking his juice and then I realize I hear spitting. He had taken all 10 oz of water/juice put it in his mouth and then proceeded to SPIT it onto his castle and dinosaurs. My carpet was soaked, his clothes were soaked and I was on the verge of loosing my mind.
Mind you this has come after a long day of cracker smashing into my rug and table flipping. Yes, you heard me right, he tried to flip his work table over at least 5 times with all 3 therapists today. Beasting out table flipping ala Teresa Guidice (Real Housewives of NJ). He's also shaking his body and head uncontrollably which I've never seen before and spinning again, which I haven't seen in months. The last thing he did was slam his head into the steps TWICE......he hasn't hit his head on something since he was 16 months old.
I am so bummed today......I have this super optimistic outlook for my son and I get scared when I see these behaviors come out. I ignorantly thought they were gone, today hurt. August 9th I made a neurologist appointment for him. I'm on the fence about bringing him to a Developmental Pediatrician......I'd bring him to a DAN! Dr but they don't take insurance.
The last few weeks we started down this road of starting alternate treatments on top of his therapies (which I will say are the only proven methods of "Curing") and its just made me more stressed. I am hoping I can see a difference soon, cant wait to try the behavioral balance in the coming weeks. We are actually using my husband as a guinea pig first, we got him Omega-3's and the Behavioral Balance in pill form.....he starts tomorrow. Hopefully that can work for him too and relieve some stress and help him socially. All we want is to fix our baby.......I know there are people that say they want to leave their child the way they are but for us, slamming your head into a step and spitting on your toys is not ok. Dear God, help us fix our baby.
Labels:
ABA,
anxiety,
aspergers,
Autism,
biomedical,
parenting,
special needs,
stress,
vitamins
Wednesday, July 20, 2011
The Cost of Autism
First let me say, I am lucky, I live in a great school district that will pay for my sons preschool. Most of the things I would like to do to help my son are extra, but like I have said, once you have a child you will do ANYTHING to help them. I find that a lot of people not effected have no idea the cost, time, stress that is placed on us parents who are raising 1, 2 even 3 children with Autism. So here I will lay it out.....and as of now, nothing is covered by insurance :)
Average Cost home ABA - $60-$100 per hour.....20-40 hours a week recommended = $1,200- $4,000
Average Cost of Speech Therapy - $50-$80 an hour 2 hours a week = $100-$160
Average cost of Occupational Therapy - $70-$120 an hour 2 hours a week = $140- $240
Average cost of Physical Therapy - $50- $120 an hour 2 hours a week = $100- $240
Average Cost of Special Ed School with Autistic Program- $35,000 - $93,000 a year
OK those things for most of us in NY state are covered.....that is except that amount of ABA hours, I get 15 hours covered and can not pay for the extra. Once my son starts school he will get no ABA, that is unless I get a doctor to say he needs it. There is no way on earth I can afford 1/8th of that so I will have to do it myself at home which leads me to...........
Loss of wages because one parents must now be a teacher - 20k-60k a year..... oh yea people forget that part.
Now the Extras
School supplies and Tools (language builder cards, ipads, apps, speech therapy tools, trampolines, sensory tools, swings, feeding tools ) - $200 - $5,000
Hyperbaric Treatments - Recommended 40 hour treatments = $4,000
Vitamins and Supplements = $300-$1,000 a year depending on severity
Biofeedback = 60 hours with in one year @ $150 a session = $9,000
Chelation Therapy- $75- $125 an hour...I'm not even sure what the hours are on this but I know the cost is in the thousands.
Gluten free and Casein free diets - I cant even begin to go into this....this is something I CAN NOT do.......I can not pay $4 for a loaf of bread. Everything is literally twice the price of regular. i dont have the will power to go through with this.... .I suppose is all else failed, I would do it.
Now I will get contreversial.......there are some groups that do not help with these things mentioned above (Autism Speaks). People walk for Autism and raise awareness and I love it. My issue is where does the money go.....the largest chunk to salaries, the second chunk to research.....25 million to research to find one gene (which doesnt exist) that causes Autism. $1.7 million went to 34 families to help them........that's out of about 72 Million raised. I say instead find an organization that give the money to the FAMILIES. I had an issue lately where my husband wanted to start our own run to put money away to look into getting the Hyperbaric Treatments at St. Josephs in Bethpage......I tried to tell him that we cant really start our own run, but he was just trying to help. There are plenty of local organizations in everyone's areas that help the kids, and help the families, donate to them. Here On long Island we have the Nassau/Suffolk Austim Society, they set up family days free of charge at different museums and places around the area free of charge for families.
Having a Child with Special Needs is exhausting, its stressful in every aspect. And if anything check out this Blog From Lost and Tired <------he does a wonderful job of explaining what us parents really need.
Much <3
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