IEP meetings are tough. Before our meeting, I didn't really think about how tough they were on everyone else involved. Before, I didn't feel like my concerns about Ali were heard. Before, I didn't feel like we were a team. My how things have changed!
I went in there prepared to have to fight tooth and nail for every concession. I was met with a little opposition, but nothing serious. I felt it was of utmost importance for Ali to get more school time. Before, he was going from 12:30 to 3:00. He was having to cram therapy in there (a sore spot for sure), and has been there mostly socially. Now, gets picked up at 7:45 and I pick him up at 11:30. He gets Phonics/Reading/Handwriting time, Music/PE, and breakfast AND lunch time.
He's been having behavioral issues, and I wonder if it's due to the seasons. Shorter days, stomach bugs, allergies, etc. make ME cranky, so I can't imagine how they make him feel (especially since he's nonverbal). I just wish he didn't take it out on his teachers and paras. I know they're exhausted. I know this because that's how I feel! But I know that he can do more than 2.5 hours at school. I'm so relieved that they feel the same!
It was suggested that we start adding time little by little as to not overwhelm him. But my stance was to start with the bigger block of time and cut down if needed. This was more based on the fear that the added time may never come if it were based on his behavior. He is also going at an entirely different time of day which we thought might add to his behavior issues. He's not a morning person. Haha. But every time I wake him up and say "It's time for school" he hops out of his bed with a skip in his step! He is READY! I FREAKING KNEW IT!
Now, I have to say this because I feel horrible for not considering the feelings of the other folks on our team when I wrote previous blogs. When I described "centers" in his homeroom as chaotic, I meant that it was likely chaos in Ali's mind. Mrs. F. is the best teacher we could have asked for! She takes time out to spend individualized time with him daily, which is a formidable in and of itself with 20+ kindergartners! And all of his teachers, paras, and therapists deserve a freaking medal (and LOTS of chocolate) for dealing with his tantrums and meltdowns. That boy can kick and headbutt like Chuck Norris.
Previously, I didn't feel like we were all on the same page. I felt like I was fighting a losing battle to get Ali more time at school. I kind of felt like no one else believed in him the way I did. But I was WRONG, and for that I am grateful. I have always had full confidence in his school to treat him with respect and care, but I never realized how much they love him until our meeting. When I told them that I felt like they didn't believe in him like I did, there was not a dry eye in the room. They LOVE him, and are emotionally invested in him. And I couldn't be happier.
Monday, January 13, 2014
Monday, January 6, 2014
The Beginning
Here's a question from Jennifer posted on my Facebook page:
Would you mind sharing with us how your journey with Autism started? Like what made you feel that little man should be evaluated for Autism and how old he was?
Well, when Ali was a baby, we had his hearing tested many times. It was as if he couldn't hear someone interacting with him. Early intervention services recommended that I put him into speech therapy, but I was one of THOSE moms. You know, the ones who are all "There's nothing wrong with my kid!" So when he started preschool and they recommended speech therapy and a full-scale hearing evaluation, I was taken aback. He had the testing done, and they said there was nothing wrong with his hearing. Fabulous! Right? Wrong. They recommended Occupational Therapy, but I never even got him evaluated. Not then, at least.
Fast forward to just before Ali turned two. He got a blown eardrum due to an infected inner ear and was scheduled to get Eustachian tubes put in place. We thought that for sure that would help him speak! He hadn't spoken up until that point except for repetitive noises like "mama" and "dada". Which is pretty normal for that age, but everyone wants their baby to talk.
A couple months before his third birthday, I decided that I was worried. Ali still wasn't talking. He NEVER slept through the night. He was restricting what foods he would allow you to feed him more and more. He was extremely hyperactive. But I didn't have any basis of comparison because he was my first child. Was it okay that he was obsessed with turning the lights on and off? Was it normal for little kids to "paint" with their poop? Do all little kids eat one thing ONLY for breakfast and dinner, and do they throw up or scream in pain when you try to feed them something different? Is every little kid obsessed with movie credits? Was my kid quirky, or was there something "wrong" with him?
I took Ali into our pediatrician and told him my concerns. Surprisingly, he was flippant with his answers. "He's a normal, growing boy. He will grow out of this." Part of me was celebrating. There's nothing to worry about!! But I still had that inkling of fear. What if there IS something I am missing?
I did a LOT of research about things I knew nothing about. But then I found it. Autism. What is it? Surely my kid can't have that, he's so smart! He's a problem solver! He's got such light in his eyes and a joy that which none can compare! How could he have something like this? But then I saw another parent talking about how her autistic child is obsessed with turning the lights on and off (we had been battling that for months). I know it seems silly, but this sealed the deal. I was out of my mind with worry. So off I went to ask the doctor about speech therapy. It took THREE MORE TRIPS for him to agree to sign a referral for speech therapy! Are you f$%king kidding me?!? Needless to say, we switched doctors.
Upon switching docs, I was met with the same concern that I felt. When we went to therapy, they recommended both Speech Therapy and Occupational Therapy. They also suggested we think about getting him evaluated by a Developmental Specialist. I asked our new doctor (she's actually the PA, but we haven't seen anyone but her in the past three years), and she immediately got us on the 8 month waiting list to get him the extensive evaluation he needed. We also got his hearing tested again in the interim to rule out any hearing issues.
When he was evaluated, we knew it was autism long before they told us. What we didn't know was that he also had ADHD, Sensory Integration Disorder, Speech and Language Disorder, and Sleep Disorder. That's a lot of disorders! But they gave us medication that made him sleep! The first time he slept through the night was two months shy of his fourth birthday! I would be grumpy too if I missed that much sleep. Haha.
I hope this answered those burning questions Jennifer. Please don't hesitate to ask any more questions! I am definitely not all-knowing when it comes to autism, but I will help out in any way I can!
Would you mind sharing with us how your journey with Autism started? Like what made you feel that little man should be evaluated for Autism and how old he was?
Well, when Ali was a baby, we had his hearing tested many times. It was as if he couldn't hear someone interacting with him. Early intervention services recommended that I put him into speech therapy, but I was one of THOSE moms. You know, the ones who are all "There's nothing wrong with my kid!" So when he started preschool and they recommended speech therapy and a full-scale hearing evaluation, I was taken aback. He had the testing done, and they said there was nothing wrong with his hearing. Fabulous! Right? Wrong. They recommended Occupational Therapy, but I never even got him evaluated. Not then, at least.
Fast forward to just before Ali turned two. He got a blown eardrum due to an infected inner ear and was scheduled to get Eustachian tubes put in place. We thought that for sure that would help him speak! He hadn't spoken up until that point except for repetitive noises like "mama" and "dada". Which is pretty normal for that age, but everyone wants their baby to talk.
A couple months before his third birthday, I decided that I was worried. Ali still wasn't talking. He NEVER slept through the night. He was restricting what foods he would allow you to feed him more and more. He was extremely hyperactive. But I didn't have any basis of comparison because he was my first child. Was it okay that he was obsessed with turning the lights on and off? Was it normal for little kids to "paint" with their poop? Do all little kids eat one thing ONLY for breakfast and dinner, and do they throw up or scream in pain when you try to feed them something different? Is every little kid obsessed with movie credits? Was my kid quirky, or was there something "wrong" with him?
I took Ali into our pediatrician and told him my concerns. Surprisingly, he was flippant with his answers. "He's a normal, growing boy. He will grow out of this." Part of me was celebrating. There's nothing to worry about!! But I still had that inkling of fear. What if there IS something I am missing?
I did a LOT of research about things I knew nothing about. But then I found it. Autism. What is it? Surely my kid can't have that, he's so smart! He's a problem solver! He's got such light in his eyes and a joy that which none can compare! How could he have something like this? But then I saw another parent talking about how her autistic child is obsessed with turning the lights on and off (we had been battling that for months). I know it seems silly, but this sealed the deal. I was out of my mind with worry. So off I went to ask the doctor about speech therapy. It took THREE MORE TRIPS for him to agree to sign a referral for speech therapy! Are you f$%king kidding me?!? Needless to say, we switched doctors.
Upon switching docs, I was met with the same concern that I felt. When we went to therapy, they recommended both Speech Therapy and Occupational Therapy. They also suggested we think about getting him evaluated by a Developmental Specialist. I asked our new doctor (she's actually the PA, but we haven't seen anyone but her in the past three years), and she immediately got us on the 8 month waiting list to get him the extensive evaluation he needed. We also got his hearing tested again in the interim to rule out any hearing issues.
When he was evaluated, we knew it was autism long before they told us. What we didn't know was that he also had ADHD, Sensory Integration Disorder, Speech and Language Disorder, and Sleep Disorder. That's a lot of disorders! But they gave us medication that made him sleep! The first time he slept through the night was two months shy of his fourth birthday! I would be grumpy too if I missed that much sleep. Haha.
I hope this answered those burning questions Jennifer. Please don't hesitate to ask any more questions! I am definitely not all-knowing when it comes to autism, but I will help out in any way I can!
Friday, January 3, 2014
Longer Days and Shorter Tempers
Ali is supposed to either start going to school in the mornings or add an hour to his time in the afternoon starting three days from now, and I have yet to hear anything from the school. He goes to school from 12:30-3:00. Well, it's really more like 12:45-2:30 because they're always late, and they always drop him off early. And four of the five days he's there, he has 30 minutes of therapy (OT and speech rotating) to cram into his day! Plus we have been working on having him mostly integrated, and the time that he's there they're going "centers" AKA complete chaos. So, yeah.
They're trying to find enough people to "handle" him. He has a personal para that goes with him everywhere, and her lunch break is right in the middle of where it would be the most logical to get more time for him(his para is amazing, and has made all the difference in the world this year so my problem isn't with her at all). And they're short staffed. And Aidan can't "handle" the extra time or lunch with the other kids. I am tired of the excuses! I know he can do it, and I wish someone would side with me and believe in him, too!
But I guess that's how it is with "our people", right? We fight and fight for our kids even when everyone else thinks we're wrong or crazy. But what if I'm wrong? What if he can't handle the extra time? Is it worth all the fight to be wrong in the end anyway? I just hate the thought of my six year old son only getting to go to school for less than three hours because the school lacks the resources for him to have a better educational experience.
Exploring the Past: Part 3
January 18, 2013
“Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.” ― Debra Ginsberg
This could never be more applicable than it is right now. With every victory, my heart swells. With each regression, I feel like I've been stabbed. I've been wondering if I'm not just a tad too codependent when it comes to my children's happiness. How far is too far? When are you supposed to start letting your child's obvious pain(be it emotional, physical, psychological, etc.) take a backburner to your own need for happiness? Should I be more distant with my emotions? I know they say that you're not supposed to let someone else's happiness control your own, but does that still ring true when it's your kids? I mean, it's my JOB to make them healthy, though not always happy, people. I don't let my attitude go straight down the toilet at the first sign of a temper tantrum, but they do take their toll. When you listen to your child whine, scream, and cry for at least 60% of the day and you don't know WHY they're crying, it's bound to take it's toll. Right? Or am I supposed to disconnect? Maybe that's why our disciplining techniques aren't working. Because I am too emotionally attached to the discipline. Honestly, after a certain point, every mom will just grumble a warning or bark an order instead of getting up out of the seat when she JUST SAT DOWN for the first time in hours instead of making them do whatever it is that they're supposed to be doing(or not doing).
Today, autism means exhaustion. Not the kind that can be fixed by 8 hours of sleep and a steaming cup of coffee first thing when you get up. Oh, no! That'd be much too easy. This kind of exhaustion is like being neck deep in sand. You could climb out if only you had something to hold on to. Some tiny sliver of hope to grasp. And you try to kick your way out, but everything is bogging you down and it just makes it worse because you didn't have the energy to fight in the first place. You feel it in your bones. My heart hurts for Ali because I am his mom. I am supposed to fix his boo-boos and assure him that everything will be fine. And he is supposed to take comfort in that fact. What the hell do I do now, when the problem isn't something that will just go away with a kiss and a band-aid?!
Ali's neuro-psychiatrist said he is clinically depressed. She's been noticing the patterns, and brought my attention to the fact that this has all been coming to a head since he started school. Okaaaaay, so what do I do now? We are going to start therapy at the hospital again(his doc said perhaps he doesn't have a good relationship with his OT at school, which would explain the immediate need for a meltdown every time it's time to go.) But what if that doesn't help? We are also starting Parent Child Interaction Therapy. I honestly couldn't explain this very well if I tried, but I would venture to say that it will act as a mediator for Ali and me to build a stronger more stable relationship.
If you would've told me 6 months ago that Ali would be punching his teachers in the face on a daily basis, I would've called you a liar. If you would've said that he would become clinically depressed, I would've laughed in your face. His joy was always my most favorite quality about him. He used to be an extremely happy kid with rare moments of frustration/anger. Now he is a frustrated, angry kid with brief moments of happiness. Did we jump the gun by putting him in school? Did we overestimate his capabilities? Or do we not ask enough of him at home to where it is next to impossible for the school to get him to do things that he doesn't want to do? Where is my damn life manual?
“Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.” ― Debra Ginsberg
This could never be more applicable than it is right now. With every victory, my heart swells. With each regression, I feel like I've been stabbed. I've been wondering if I'm not just a tad too codependent when it comes to my children's happiness. How far is too far? When are you supposed to start letting your child's obvious pain(be it emotional, physical, psychological, etc.) take a backburner to your own need for happiness? Should I be more distant with my emotions? I know they say that you're not supposed to let someone else's happiness control your own, but does that still ring true when it's your kids? I mean, it's my JOB to make them healthy, though not always happy, people. I don't let my attitude go straight down the toilet at the first sign of a temper tantrum, but they do take their toll. When you listen to your child whine, scream, and cry for at least 60% of the day and you don't know WHY they're crying, it's bound to take it's toll. Right? Or am I supposed to disconnect? Maybe that's why our disciplining techniques aren't working. Because I am too emotionally attached to the discipline. Honestly, after a certain point, every mom will just grumble a warning or bark an order instead of getting up out of the seat when she JUST SAT DOWN for the first time in hours instead of making them do whatever it is that they're supposed to be doing(or not doing).
Today, autism means exhaustion. Not the kind that can be fixed by 8 hours of sleep and a steaming cup of coffee first thing when you get up. Oh, no! That'd be much too easy. This kind of exhaustion is like being neck deep in sand. You could climb out if only you had something to hold on to. Some tiny sliver of hope to grasp. And you try to kick your way out, but everything is bogging you down and it just makes it worse because you didn't have the energy to fight in the first place. You feel it in your bones. My heart hurts for Ali because I am his mom. I am supposed to fix his boo-boos and assure him that everything will be fine. And he is supposed to take comfort in that fact. What the hell do I do now, when the problem isn't something that will just go away with a kiss and a band-aid?!
Ali's neuro-psychiatrist said he is clinically depressed. She's been noticing the patterns, and brought my attention to the fact that this has all been coming to a head since he started school. Okaaaaay, so what do I do now? We are going to start therapy at the hospital again(his doc said perhaps he doesn't have a good relationship with his OT at school, which would explain the immediate need for a meltdown every time it's time to go.) But what if that doesn't help? We are also starting Parent Child Interaction Therapy. I honestly couldn't explain this very well if I tried, but I would venture to say that it will act as a mediator for Ali and me to build a stronger more stable relationship.
If you would've told me 6 months ago that Ali would be punching his teachers in the face on a daily basis, I would've called you a liar. If you would've said that he would become clinically depressed, I would've laughed in your face. His joy was always my most favorite quality about him. He used to be an extremely happy kid with rare moments of frustration/anger. Now he is a frustrated, angry kid with brief moments of happiness. Did we jump the gun by putting him in school? Did we overestimate his capabilities? Or do we not ask enough of him at home to where it is next to impossible for the school to get him to do things that he doesn't want to do? Where is my damn life manual?
Exploring the Past: Part 2
January 5, 2013
99% of the time I go on and on about how much progress Ali has made. 99% of the time, I don't complain(on the internet, at least). But you know what? Sometimes? Autism SUCKS. I usually talk about how "we're on the road less traveled, but at least we're together" and "God doesn't make mistakes." But, DAMN IT I DESERVE MY PITY PARTY!!!
I remember five years ago, looking into Ali's gorgeous little eyes and telling him that he could be anything he wanted. I had so many dreams for him. I could picture him graduating high school, going to college, getting married, etc. etc. All of that is gone now. ALL of it. I wanted so much more for him! Every year on every birthday in the past, we've thought "He will be talking by his next birthday." Not yet. We are still waiting. And I think about how if he could just communicate with us in ANY way, all of our problems would be solved! It would make it so much easier, but I know that is not the whole truth. We have lots more to deal with.
He has Sensory Integration Disorder. His sensory issues are very hard to handle sometimes. He has some outrageous oral sensitivity issues. Just the feeling of something different in his mouth seems to be painful for him. He is also very sensitive to sound. There are certain sounds that he cannot tolerate, such as the sound one of his Ninja Turtle toys makes. He freaks out. He also will NOT let me cut his toenails. I have to do it in his sleep! He hates for anyone to touch his feet, and has to wear socks at all times.
And he has a Sleep Disorder. Oh glorious clonidine, how I love thee. He will not sleep without medication. Ever. He didn't sleep through the night until two months before his 4th birthday. His body is tired, but his mind won't let his body stop moving.
Which takes us to the ADHD. Lord have mercy, this child bounces off of the walls. I mean that quite literally. He takes a running start at the wall(or the window, or the door...) and bounces off. Unmedicated, he knocks over furniture and people. He doesn't mean to, but he isn't aware of his surroundings. He's hurt his siblings and himself several times just by not knowing what was going on.
None of these things are his fault. Although I am upset/angry/sad at the moment, I know God truly doesn't make mistakes. Ali has a greater purpose than any of us can fathom. I just don't know if I'm up to it. I try to be a good mom to him, his brother, and sister. I try to be active with them, listen to everything they want to tell me, and make them feel like the beautiful little people they are. But what if I'm not good enough? For the first two years of Ali's life, I was a piece of crap mom. I wasn't what I should've been for him. I always wonder, if I would've paid more attention to the signs, would I have been able to get early intervention services early enough to where he would've talked? Perhaps his autism wouldn't have gotten so bad if I would have understood what was happening? "He was my first child, so I didn't know what to look for." Is that just my excuse for ignoring what was so plain to see?
I remember getting Ali's hearing checked multiple times before he turned 2. He stopped responding to his name, stopped developing speech, and started losing the words he had already learned at around 18 months. He was slipping away, and I didn't realize my world started to crumble. When I starting dating The Hubs (he is Ali's stepfather), he kind of asked questions and pointed out things that I hadn't noticed.
We hoped upon hope that getting tubes put in his ears would help. We thought he just couldn't hear! And our family doctor at the time acted like I was crazy for being concerned. "He's a normal boy. There's nothing wrong. He'll grow out of it." And I listened to that for a while. But he was almost 3 and still not talking, so I demanded an evaluation from a speech therapist. I was right about his developmental delays, and he started speech and occupational therapy twice a week. Needless to say, we switched doctors. Our new doctor LISTENED, and she immediately agreed that we should have him evaluated. 8 months later(the waiting list was looooooong), we found out for sure that he had Autism Spectrum Disorder. It wasn't surprising, but I'd be lying if I said it wasn't devastating. Every hope and dream I had for him went out the window.
I know that we are now on a different, not lesser, path. My dreams for him were MY dreams. But isn't what God has planned always better than what we plan for ourselves? I know I wouldn't be half the mom, heck, half the PERSON, I am today if it weren't for the struggles that we've been through with all of this. But it is HARD. Some days, I don't feel like being a mom. I wouldn't trade it for anything, but it sucks. Autism SUCKS sometimes. The feeling of "I have to live forever" because you don't know what would happen to your kid if you died SUCKS. Feeling like if you would've done something different, maybe your child wouldn't have to struggle through the most menial of tasks SUCKS. Having your almost one year old son passing your five year old in any area of development SUCKS. Wondering if there's some miracle treatment out there that you haven't tried to "fix" your child SUCKS. Feeling guilty for wanting to "fix" your child REALLY SUCKS.
Every great once in a while(about once a year, usually around his birthday) I mourn the loss of a person that never was. Every time The Princess passed Ali in any area, it was bittersweet. And now, Junior will do something every once in a while that shows just how far behind Ali really is. It just breaks my heart knowing that he will have to watch his siblings growing up without him. Does he notice? Does he see how it hurts me to see him falling more and more behind, but he just can't tell me? Do I make him feel like a lesser person because of all of that?
I don't think I could handle any more kids, and not for the reasons you might think. When The Princess hit age 2 and still wasn't talking a whole lot, I was out of my mind with worry. I kept thinking that I couldn't handle two with autism. Now, I watch Junior like a hawk. I try to make sure I don't miss any little sign of anything "off". But the biggest reason why I don't want any more kids is because I don't think my heart could take a third child surpassing Ali developmentally.
Thanks for listening. I know I probably sound like a big crybaby, and maybe I am. But it hurts. Sometimes it hurts so damn bad that I question God's judgement in making me Ali's mom. I will die trying to be the best mom I can for him. I just hope that it's enough...
99% of the time I go on and on about how much progress Ali has made. 99% of the time, I don't complain(on the internet, at least). But you know what? Sometimes? Autism SUCKS. I usually talk about how "we're on the road less traveled, but at least we're together" and "God doesn't make mistakes." But, DAMN IT I DESERVE MY PITY PARTY!!!
I remember five years ago, looking into Ali's gorgeous little eyes and telling him that he could be anything he wanted. I had so many dreams for him. I could picture him graduating high school, going to college, getting married, etc. etc. All of that is gone now. ALL of it. I wanted so much more for him! Every year on every birthday in the past, we've thought "He will be talking by his next birthday." Not yet. We are still waiting. And I think about how if he could just communicate with us in ANY way, all of our problems would be solved! It would make it so much easier, but I know that is not the whole truth. We have lots more to deal with.
He has Sensory Integration Disorder. His sensory issues are very hard to handle sometimes. He has some outrageous oral sensitivity issues. Just the feeling of something different in his mouth seems to be painful for him. He is also very sensitive to sound. There are certain sounds that he cannot tolerate, such as the sound one of his Ninja Turtle toys makes. He freaks out. He also will NOT let me cut his toenails. I have to do it in his sleep! He hates for anyone to touch his feet, and has to wear socks at all times.
And he has a Sleep Disorder. Oh glorious clonidine, how I love thee. He will not sleep without medication. Ever. He didn't sleep through the night until two months before his 4th birthday. His body is tired, but his mind won't let his body stop moving.
Which takes us to the ADHD. Lord have mercy, this child bounces off of the walls. I mean that quite literally. He takes a running start at the wall(or the window, or the door...) and bounces off. Unmedicated, he knocks over furniture and people. He doesn't mean to, but he isn't aware of his surroundings. He's hurt his siblings and himself several times just by not knowing what was going on.
None of these things are his fault. Although I am upset/angry/sad at the moment, I know God truly doesn't make mistakes. Ali has a greater purpose than any of us can fathom. I just don't know if I'm up to it. I try to be a good mom to him, his brother, and sister. I try to be active with them, listen to everything they want to tell me, and make them feel like the beautiful little people they are. But what if I'm not good enough? For the first two years of Ali's life, I was a piece of crap mom. I wasn't what I should've been for him. I always wonder, if I would've paid more attention to the signs, would I have been able to get early intervention services early enough to where he would've talked? Perhaps his autism wouldn't have gotten so bad if I would have understood what was happening? "He was my first child, so I didn't know what to look for." Is that just my excuse for ignoring what was so plain to see?
I remember getting Ali's hearing checked multiple times before he turned 2. He stopped responding to his name, stopped developing speech, and started losing the words he had already learned at around 18 months. He was slipping away, and I didn't realize my world started to crumble. When I starting dating The Hubs (he is Ali's stepfather), he kind of asked questions and pointed out things that I hadn't noticed.
We hoped upon hope that getting tubes put in his ears would help. We thought he just couldn't hear! And our family doctor at the time acted like I was crazy for being concerned. "He's a normal boy. There's nothing wrong. He'll grow out of it." And I listened to that for a while. But he was almost 3 and still not talking, so I demanded an evaluation from a speech therapist. I was right about his developmental delays, and he started speech and occupational therapy twice a week. Needless to say, we switched doctors. Our new doctor LISTENED, and she immediately agreed that we should have him evaluated. 8 months later(the waiting list was looooooong), we found out for sure that he had Autism Spectrum Disorder. It wasn't surprising, but I'd be lying if I said it wasn't devastating. Every hope and dream I had for him went out the window.
I know that we are now on a different, not lesser, path. My dreams for him were MY dreams. But isn't what God has planned always better than what we plan for ourselves? I know I wouldn't be half the mom, heck, half the PERSON, I am today if it weren't for the struggles that we've been through with all of this. But it is HARD. Some days, I don't feel like being a mom. I wouldn't trade it for anything, but it sucks. Autism SUCKS sometimes. The feeling of "I have to live forever" because you don't know what would happen to your kid if you died SUCKS. Feeling like if you would've done something different, maybe your child wouldn't have to struggle through the most menial of tasks SUCKS. Having your almost one year old son passing your five year old in any area of development SUCKS. Wondering if there's some miracle treatment out there that you haven't tried to "fix" your child SUCKS. Feeling guilty for wanting to "fix" your child REALLY SUCKS.
Every great once in a while(about once a year, usually around his birthday) I mourn the loss of a person that never was. Every time The Princess passed Ali in any area, it was bittersweet. And now, Junior will do something every once in a while that shows just how far behind Ali really is. It just breaks my heart knowing that he will have to watch his siblings growing up without him. Does he notice? Does he see how it hurts me to see him falling more and more behind, but he just can't tell me? Do I make him feel like a lesser person because of all of that?
I don't think I could handle any more kids, and not for the reasons you might think. When The Princess hit age 2 and still wasn't talking a whole lot, I was out of my mind with worry. I kept thinking that I couldn't handle two with autism. Now, I watch Junior like a hawk. I try to make sure I don't miss any little sign of anything "off". But the biggest reason why I don't want any more kids is because I don't think my heart could take a third child surpassing Ali developmentally.
Thanks for listening. I know I probably sound like a big crybaby, and maybe I am. But it hurts. Sometimes it hurts so damn bad that I question God's judgement in making me Ali's mom. I will die trying to be the best mom I can for him. I just hope that it's enough...
Exploring the Past: Part 1
I will be posting notes written on Facebook long before I created a blog. This is an effort to show you guys how things used to be. You can't know where you're going before you know where you've been, right?
April 22, 2012
Okay, so I do not do this very often. You will not see me constantly posting “FML” statuses, or complaining about my life with any consistency. Things have just been bothering me so much lately, and I feel like I need to vent.
I went into Wal-Mart the other day to buy diapers, and the cashier commented on the fact that I buy a lot of diapers. I told her that I have three kiddos in diapers at home, and she asked the ages of my children. I told her Ali was 4 and has autism. She said, “Really? My nephew has autism and he was potty trained at three. Maybe you’re not trying hard enough.” EXCUSE ME?! Come on! I am constantly trying new tactics on how to potty train my son. It is a daily struggle to even get him to let me know that he’s hungry! (He just screams and cries at a certain time every day to let me know that he’s hungry.) Do not tell me that I am not trying hard enough. I bust my ass every single day to make sure that he is taken care of. He is given every opportunity in the world to let me know what he wants/needs. You are not the foremost expert on autism because you know OF someone who has autism. Yes, I know your brother’s wife’s cousin’s sister’s mom’s stepdaughter twice removed has autism. That does NOT mean you know exactly what my son’s autism looks like. That is like assuming that you know all about how to fix a car because you watched “Pimp My Ride” one time ten years ago. Not. The. Same. I was rude to the cashier, and, looking back, I really shouldn’t have been. It is my job to explain things like this to people. I cannot complain about their ignorance if they have never been taught that they are ignorant!
Also, a lot of people think that "retardation" (In quotes because it is an ugly term) and having autism are one and the same. I, myself was guilty of this. They are very different. "Retardation" is categorized as having an IQ below 70, among many, many other traits (I am not going to claim to know a whole lot about it. I am not an expert). Autistic people can have a very high IQ, but they have difficulty in social situations. Expressing their needs/wants/emotions can be an extremely overwhelming task. And, no, not every autistic person can’t speak. Ali also has Speech and Language Disorder. If "retardation" were the case with my Ali, I would STILL love him unconditionally.
Also, I’ve seen many people stare at my son when we are out in public. You may look, but please have the decency to not STARE. I am not staring at you. Yes, he flaps his hands when he is happy, hits his chin with his fist when he is excited, and folds his ears over when he is nervous and unsure. I am totally aware of this. I am also aware of the fact that his behavior is not hurting you or affecting you in any way. It’s a shame that your mother never taught you manners.
That’s another thing. I have never been in this situation myself (God help us all on the day that it will inevitably happen), but if you whisper, “If that were MY child…” know that you’re what I would regard as the scum of the earth. If he were YOUR child, he would not be having a meltdown, is that it? Do you realize that public places, take the grocery store for example, are so overwhelming for him because everything is intensified for Ali? Imagine you have the world’s worst migraine. Lights are too bright, sounds are too loud, and even light touch can be excruciatingly painful. Now, imagine that you feel that way EVERY DAY. That is my son’s life with autism. My job is to turn down the volume. So, yes, if he were YOUR child, he would be in big trouble. Why? Because obviously you do not have the capacity to understand or help a child like Ali. Thank God He blessed me with my amazing gift of a son instead of you. Do not assume that because he cannot speak that he has nothing to say or that his silence is because he has no opinions on your topic of choice. He is crazy brilliant, such an amazing little guy that it astounds me daily. His problem solving (or making haha) skills far outweigh any other kiddo that I know of, and he is unable to speak.
Lately, I have been feeling very guilty. I have been trying to have Ali do all of the “normal” kid stuff. Like trick-or-treating last year. He went because I felt like he’d be missing out if he didn’t. He had a ridiculously huge meltdown every time he had to get back in the car. I mean a kicking-screaming-biting-hitting-crying mess of a meltdown. I wasn’t thinking about what would be best, easiest, and most enjoyable for HIM. I just wanted him to feel “normal.” But what I am beginning to understand is that he is never going to fit into my cookie-cutter mold for him. AND THAT IS PERFECTLY OKAY. I don’t want to make him do the things that society thinks he should do(or shouldn’t do) just because. If he doesn’t want to go trick-or-treating, we won’t go. If he wants to live as a “color outside the lines” type of kid, my job is to give him a loving and caring environment in which to grow in the direction he chooses. I am no longer going to push my own agenda onto him because it’s what other children his age do. I will urge change and growth, not “normalcy.”
April 22, 2012
Okay, so I do not do this very often. You will not see me constantly posting “FML” statuses, or complaining about my life with any consistency. Things have just been bothering me so much lately, and I feel like I need to vent.
I went into Wal-Mart the other day to buy diapers, and the cashier commented on the fact that I buy a lot of diapers. I told her that I have three kiddos in diapers at home, and she asked the ages of my children. I told her Ali was 4 and has autism. She said, “Really? My nephew has autism and he was potty trained at three. Maybe you’re not trying hard enough.” EXCUSE ME?! Come on! I am constantly trying new tactics on how to potty train my son. It is a daily struggle to even get him to let me know that he’s hungry! (He just screams and cries at a certain time every day to let me know that he’s hungry.) Do not tell me that I am not trying hard enough. I bust my ass every single day to make sure that he is taken care of. He is given every opportunity in the world to let me know what he wants/needs. You are not the foremost expert on autism because you know OF someone who has autism. Yes, I know your brother’s wife’s cousin’s sister’s mom’s stepdaughter twice removed has autism. That does NOT mean you know exactly what my son’s autism looks like. That is like assuming that you know all about how to fix a car because you watched “Pimp My Ride” one time ten years ago. Not. The. Same. I was rude to the cashier, and, looking back, I really shouldn’t have been. It is my job to explain things like this to people. I cannot complain about their ignorance if they have never been taught that they are ignorant!
Also, a lot of people think that "retardation" (In quotes because it is an ugly term) and having autism are one and the same. I, myself was guilty of this. They are very different. "Retardation" is categorized as having an IQ below 70, among many, many other traits (I am not going to claim to know a whole lot about it. I am not an expert). Autistic people can have a very high IQ, but they have difficulty in social situations. Expressing their needs/wants/emotions can be an extremely overwhelming task. And, no, not every autistic person can’t speak. Ali also has Speech and Language Disorder. If "retardation" were the case with my Ali, I would STILL love him unconditionally.
Also, I’ve seen many people stare at my son when we are out in public. You may look, but please have the decency to not STARE. I am not staring at you. Yes, he flaps his hands when he is happy, hits his chin with his fist when he is excited, and folds his ears over when he is nervous and unsure. I am totally aware of this. I am also aware of the fact that his behavior is not hurting you or affecting you in any way. It’s a shame that your mother never taught you manners.
That’s another thing. I have never been in this situation myself (God help us all on the day that it will inevitably happen), but if you whisper, “If that were MY child…” know that you’re what I would regard as the scum of the earth. If he were YOUR child, he would not be having a meltdown, is that it? Do you realize that public places, take the grocery store for example, are so overwhelming for him because everything is intensified for Ali? Imagine you have the world’s worst migraine. Lights are too bright, sounds are too loud, and even light touch can be excruciatingly painful. Now, imagine that you feel that way EVERY DAY. That is my son’s life with autism. My job is to turn down the volume. So, yes, if he were YOUR child, he would be in big trouble. Why? Because obviously you do not have the capacity to understand or help a child like Ali. Thank God He blessed me with my amazing gift of a son instead of you. Do not assume that because he cannot speak that he has nothing to say or that his silence is because he has no opinions on your topic of choice. He is crazy brilliant, such an amazing little guy that it astounds me daily. His problem solving (or making haha) skills far outweigh any other kiddo that I know of, and he is unable to speak.
Lately, I have been feeling very guilty. I have been trying to have Ali do all of the “normal” kid stuff. Like trick-or-treating last year. He went because I felt like he’d be missing out if he didn’t. He had a ridiculously huge meltdown every time he had to get back in the car. I mean a kicking-screaming-biting-hitting-crying mess of a meltdown. I wasn’t thinking about what would be best, easiest, and most enjoyable for HIM. I just wanted him to feel “normal.” But what I am beginning to understand is that he is never going to fit into my cookie-cutter mold for him. AND THAT IS PERFECTLY OKAY. I don’t want to make him do the things that society thinks he should do(or shouldn’t do) just because. If he doesn’t want to go trick-or-treating, we won’t go. If he wants to live as a “color outside the lines” type of kid, my job is to give him a loving and caring environment in which to grow in the direction he chooses. I am no longer going to push my own agenda onto him because it’s what other children his age do. I will urge change and growth, not “normalcy.”
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