Kari-anne sent this to me a few days after we found out about Mason. There isn't much I can say about it, the poem pretty much says it all. But I will add that tulips are my all-time-favorite flower ever :)
Welcome To Holland
by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child
with a disability - to try to help people who have not shared that
unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like
planning a fabulous vacation trip - to Italy. You buy a bunch of
guidebooks and make your wonderful plans. The Coliseum, the
Michalangelo David, the gondolas in Venice. You may learn some handy
phrases in Italian. It's all very exciting. After months of eager
anticipation, the day finally arrives. You pack your bags and off you
go. Several hours later, the plane lands. The stewardess comes and
says, "Welcome to Holland." "Holland?" you say. "What do you mean
Holland? I signed up for Italy! I'm supposed to be in Italy. All my
life I've dreamed of going to Italy." But there's been a change in the
flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place full of pestilence, famine and disease. It's
just a different place. So you go out and buy new guidebooks. And
you must learn a whole new language. And you will meet a whole new
group of people you would never have met. It's just a different place.
It's slower paced than Italy, less flashy than Italy. But after
you've been there for a while and you catch your breath, you look
around, and you begin to notice that Holland has windmills, Holland
has tulips, Holland even has Rembrandts. But everyone you know is busy
coming and going from Italy, and they're all bragging about what a
wonderful time they had there. And for the rest of your life, you will
say, "Yes, that's where I was supposed to go. That's what I had
planned." The pain of that will never go away, because the loss of
that dream is a very significant loss. But if you spend your life
mourning the fact that you didn't get to Italy, you will never be free
to enjoy the very special, very lovely things about Holland.
Friday, May 29, 2009
Ok, now what....
The lady from ABA Chicago emailed me. She has a colleague, in Joliet, that is willing to see Mason in the next 2wks, I just have to call him. I'm not sure if I should or not. It's odd to me, that this lady, who works w/autistic kids, would refer us to another clinic. It's sort of raising red flags for me, and I'm not sure if I'm over-reacting to it or not.
On another note, the school system called back, and Mason is scheduled to be evaluated next Friday morning! Yay! Progress! Unfortunately, they don't make a definate decision (on whether or not he qualifies for thier services) until he sits through a class or 2 observed. Because it's so close to the end of the year, that won't happen until the fall. The good thing, is, that she will be able to give me a good idea if he will qualify or not. She can't tell me 100%, but she will have a pretty good idea. So if she thinks he will qualify, then I will call DNS and tell them he won't be going there next year. I really don't think he will do very well in a classroom setting, as far as interacting w/the other kids, anyway. I *hope* he will listen to the teacher, LOL. Anyway, if he does qualify for the special ed pre-school, he would just end up starting a week or 2 late.
So, now we have to decide whether we keep him in Wee Care for group therapy, wait and see what the school says, all while continuing to persue the ever-elusive appointment at UIC. I'm told UIC is the place to be for autism. Or do we go into one of the other autism clinics and get him eval'd there, much quicker the UIC can. I'm not sure what to do now.
What am emotional rollercoaster this is! I just want my kid to get the help that he needs!!
I will update, later, when we know more. For now, I'm going to try and find a copy of "Welcome to Holland." It really sums up what this has been like for us.
On another note, the school system called back, and Mason is scheduled to be evaluated next Friday morning! Yay! Progress! Unfortunately, they don't make a definate decision (on whether or not he qualifies for thier services) until he sits through a class or 2 observed. Because it's so close to the end of the year, that won't happen until the fall. The good thing, is, that she will be able to give me a good idea if he will qualify or not. She can't tell me 100%, but she will have a pretty good idea. So if she thinks he will qualify, then I will call DNS and tell them he won't be going there next year. I really don't think he will do very well in a classroom setting, as far as interacting w/the other kids, anyway. I *hope* he will listen to the teacher, LOL. Anyway, if he does qualify for the special ed pre-school, he would just end up starting a week or 2 late.
So, now we have to decide whether we keep him in Wee Care for group therapy, wait and see what the school says, all while continuing to persue the ever-elusive appointment at UIC. I'm told UIC is the place to be for autism. Or do we go into one of the other autism clinics and get him eval'd there, much quicker the UIC can. I'm not sure what to do now.
What am emotional rollercoaster this is! I just want my kid to get the help that he needs!!
I will update, later, when we know more. For now, I'm going to try and find a copy of "Welcome to Holland." It really sums up what this has been like for us.
Thursday, May 28, 2009
This is beyond frustrating.
I'm fuming w/anger right now. It's been 2 wks since we found out Mason probably has PDD, and I haven't even been able to get an appointment for an evaluation yet.
We called UIC the same day we went to the pediatrician. We've been playing phone tag w/them for nearly 2wks, and today, finally, I did the "intake exam" over the phone. I spent, maybe 20 minutes on the phone w/the lady. She asked a bunch of questions about Mason, from my pregnancy w/him, his development, what we are concerned about and what goals we have right now. I assumed we would be able to schedule an appointment. Nope. She has to "triage" what we talked about, talk w/the head of the department, and then, IF he qualifies, he will be put on the 3-4 MONTH waiting list to get into the clinic. I am outraged to tears. My child needs help, and everyone is telling me I have to wait months to get it.
UIC isn't the only avenue we've been pursuing. I've contacted the school system, and I am pushing them to evaluate him before they are gone for the summer. I need to know if he will qualify for the special ed pre-school, or if he will go to the pre-school he is currently signed up for. I don't know, at this point, which is best for him. Even if we get in for an eval. now, he still won't start receiving therapies until school starts in the fall. So another 3-4mos of waiting. I will be calling the psych tomorrow to try and push an eval. date.
We've also contaced ABA Chicago. They've been the most promising, as far as getting help soon goes. I've been in contact w/them, they've been in contact w/our insurance. ABA starts a new session on 6/8, so hopefully he can start w/them, then, and get an eval beforehand. That leads me into my insurance rant. The insurance says that services aren't covered. The state law in IL says they HAVE to cover it. I truly do not have the energy to fight w/them, AND fight to just get my son in for help. The system is incredibly broken. They play stupid, and hope that when people hear "Services aren't covered." that they won't push it. They flat out lie. It should be illegal. We pay a high premium for this insurance. Jerime's company pays over $1500/mnth JUST for my family to get this coverage. We should NOT have to fight w/them. If he had cancer they would pay for him to get treated, but because he has autism, they don't want to. It makes no sense to me.
He is currently scheduled to start Group Behavior Therapy at Wee Care at the end of June. I'm lucky they would take him w/o an "official" DX. The downside....insurance will not pay for that because the behavior analyst doesn't have the degree they want her to have. (She has a degree, but not a psychiatry degree). It's very expensive to pay out of pocket for it. All the more reason I need him in at ABA or UIC. We will still have to pay some out of pocket, but not nearly as much.
I started out today feeling incredibly optimistic. I've been in contact w/the lady from ABA. I knew I would have this intake exam w/UIC, and I was sure I would have an appt. date after that. That's all gone now. Jerime "forgot" to print and fax some paperwork to ABA that I need him to do, because we don't have Word on our PC, so I can't print it. I did all the freaking work. All he has to do is print, sign and fax. 5 minutes of his friggin lunch hour. Douchebag. Doesn't he realize how important early intervention is?!?! %^&^%%$$^&**(*()*(*&^^&%!!
I'm really surprised at how therapeutic this blogging is. I feel slightly better already. Probably, mostly, because now I don't have to repeat this 500x for people.
Please keep sending good thoughts and prayers for my little boy! I will keep everyone updated on his progress, and our progress w/getting him what he needs.
We called UIC the same day we went to the pediatrician. We've been playing phone tag w/them for nearly 2wks, and today, finally, I did the "intake exam" over the phone. I spent, maybe 20 minutes on the phone w/the lady. She asked a bunch of questions about Mason, from my pregnancy w/him, his development, what we are concerned about and what goals we have right now. I assumed we would be able to schedule an appointment. Nope. She has to "triage" what we talked about, talk w/the head of the department, and then, IF he qualifies, he will be put on the 3-4 MONTH waiting list to get into the clinic. I am outraged to tears. My child needs help, and everyone is telling me I have to wait months to get it.
UIC isn't the only avenue we've been pursuing. I've contacted the school system, and I am pushing them to evaluate him before they are gone for the summer. I need to know if he will qualify for the special ed pre-school, or if he will go to the pre-school he is currently signed up for. I don't know, at this point, which is best for him. Even if we get in for an eval. now, he still won't start receiving therapies until school starts in the fall. So another 3-4mos of waiting. I will be calling the psych tomorrow to try and push an eval. date.
We've also contaced ABA Chicago. They've been the most promising, as far as getting help soon goes. I've been in contact w/them, they've been in contact w/our insurance. ABA starts a new session on 6/8, so hopefully he can start w/them, then, and get an eval beforehand. That leads me into my insurance rant. The insurance says that services aren't covered. The state law in IL says they HAVE to cover it. I truly do not have the energy to fight w/them, AND fight to just get my son in for help. The system is incredibly broken. They play stupid, and hope that when people hear "Services aren't covered." that they won't push it. They flat out lie. It should be illegal. We pay a high premium for this insurance. Jerime's company pays over $1500/mnth JUST for my family to get this coverage. We should NOT have to fight w/them. If he had cancer they would pay for him to get treated, but because he has autism, they don't want to. It makes no sense to me.
He is currently scheduled to start Group Behavior Therapy at Wee Care at the end of June. I'm lucky they would take him w/o an "official" DX. The downside....insurance will not pay for that because the behavior analyst doesn't have the degree they want her to have. (She has a degree, but not a psychiatry degree). It's very expensive to pay out of pocket for it. All the more reason I need him in at ABA or UIC. We will still have to pay some out of pocket, but not nearly as much.
I started out today feeling incredibly optimistic. I've been in contact w/the lady from ABA. I knew I would have this intake exam w/UIC, and I was sure I would have an appt. date after that. That's all gone now. Jerime "forgot" to print and fax some paperwork to ABA that I need him to do, because we don't have Word on our PC, so I can't print it. I did all the freaking work. All he has to do is print, sign and fax. 5 minutes of his friggin lunch hour. Douchebag. Doesn't he realize how important early intervention is?!?! %^&^%%$$^&**(*()*(*&^^&%!!
I'm really surprised at how therapeutic this blogging is. I feel slightly better already. Probably, mostly, because now I don't have to repeat this 500x for people.
Please keep sending good thoughts and prayers for my little boy! I will keep everyone updated on his progress, and our progress w/getting him what he needs.
Tuesday, May 26, 2009
The beginning
In case you don't know Mason's story, I'll post it here.
We've always described Mason as our high maintenance child. He's always been hard to soothe once he gets upset. Over the last 6 months or so (since about his 3rd birthday) Jerime and I where becoming increasingly concerned about some of his more quirky behaviors. We where mostly concerned about the fact that he refused to socialize w/other kids his age (besides his sister), but our concerns where increased when he started hand flapping, covering his ears when he was scared or nervous, and running in circles humming to himself. We knew these where all red flags for autism. We went back and forth about it, unsure whether or not we should be concerned. 85% of the time, he seems like a typical 3y/o boy. He's extremely verbal. He runs, jumps and plays w/all the typical little boy toys (and some little girl toys!) The final straw was on Payton's first birthday party. There where tons of kids his age there. At least 6 kids in the 2-4y/o age range. He not only didn't socialize w/them, but he completely segregated himself from them. You could see the stress in his face when asked if he wanted to go play w/the kids. After the party, we decided it was time to consult the pediatrician.
Making that appointment, was probably one of the hardest things I've ever had to do. It was like admitting to the world that there might be something wrong w/my child. I scheduled his appointment, and Payton's one year check up for the same time. Laura talked me into cancelling Payton's, and offered to watch my girls for me so I could just take Mason alone, and concentrate on him. I am eternally greatful to her for that. Jerime decided last minute to take the day off work and go with me. I hadn't asked him, because, well, it's a doctor's appointment. I've always been capable of takin the kids in alone, why would this be any different? So we went in, and talked to the pediatrician. He couldn't give a DX, but he did refer us to the Developmental Behavioral Pediatrician at UIC. He said "Something is definately wrong here." He feels strongly that Mason has PDD (Pervasive Developmental Disorder). PDD is an autism spectrum disorder. Basically another way of saying High Functioning Autism.
I knew. I knew that was what he was going to say before we walked in the office, but still, hearing it was like a kick in the stomach. Worse then a kick in the stomach. It felt like my world had been ripped out from underneath me. The most random things ran through my head. Things I'd never really thought about and where just givens. Would he ever play T-ball? Have a career? A family? Would kids at school be mean to him? Is he going to care? Everyday has gotten a little bit better. The world hasn't ended. He's still my Mason. Happy, funny, silly, adorable Mason.
So the next step is getting him in to see a specialist for an official DX and treatment.
We've always described Mason as our high maintenance child. He's always been hard to soothe once he gets upset. Over the last 6 months or so (since about his 3rd birthday) Jerime and I where becoming increasingly concerned about some of his more quirky behaviors. We where mostly concerned about the fact that he refused to socialize w/other kids his age (besides his sister), but our concerns where increased when he started hand flapping, covering his ears when he was scared or nervous, and running in circles humming to himself. We knew these where all red flags for autism. We went back and forth about it, unsure whether or not we should be concerned. 85% of the time, he seems like a typical 3y/o boy. He's extremely verbal. He runs, jumps and plays w/all the typical little boy toys (and some little girl toys!) The final straw was on Payton's first birthday party. There where tons of kids his age there. At least 6 kids in the 2-4y/o age range. He not only didn't socialize w/them, but he completely segregated himself from them. You could see the stress in his face when asked if he wanted to go play w/the kids. After the party, we decided it was time to consult the pediatrician.
Making that appointment, was probably one of the hardest things I've ever had to do. It was like admitting to the world that there might be something wrong w/my child. I scheduled his appointment, and Payton's one year check up for the same time. Laura talked me into cancelling Payton's, and offered to watch my girls for me so I could just take Mason alone, and concentrate on him. I am eternally greatful to her for that. Jerime decided last minute to take the day off work and go with me. I hadn't asked him, because, well, it's a doctor's appointment. I've always been capable of takin the kids in alone, why would this be any different? So we went in, and talked to the pediatrician. He couldn't give a DX, but he did refer us to the Developmental Behavioral Pediatrician at UIC. He said "Something is definately wrong here." He feels strongly that Mason has PDD (Pervasive Developmental Disorder). PDD is an autism spectrum disorder. Basically another way of saying High Functioning Autism.
I knew. I knew that was what he was going to say before we walked in the office, but still, hearing it was like a kick in the stomach. Worse then a kick in the stomach. It felt like my world had been ripped out from underneath me. The most random things ran through my head. Things I'd never really thought about and where just givens. Would he ever play T-ball? Have a career? A family? Would kids at school be mean to him? Is he going to care? Everyday has gotten a little bit better. The world hasn't ended. He's still my Mason. Happy, funny, silly, adorable Mason.
So the next step is getting him in to see a specialist for an official DX and treatment.
Hi everyone!
I started this blog to keep everyone updated on Mason and what's going on with him, and us in reguards to his diagnosis. People keep asking me what's going on, so I either end up repeating/typing it a hundred times, or I forget who I've talked to, and don't update them. I'm hoping a blog about him will keep this from happening.
Before that, though, I have to thank my amazing and wonderful friends, Kris, Paul, Shannon, Laura, Annette and Ray. Between them they have been a rock to lean on and a wealth of information. I seriously don't know where I would be right now if it weren't for them.
In fact, this blog got it's title from Shannon, who promised me that Mason would, learn to fly. And I believe that with every ounce of my being.
The support we have recieved from everyone has been amazing! I am truely grateful to every one out there who has been thinking and praying for our little boy. Please continue to do that, as the road ahead of us is going to be long and trying.
I've been sitting here trying to figure out how to end this, and I seriously can't come up with anything. I guess I should just thank everyone who reads this, and hope you all enjoy watching Mason learn to fly.
Before that, though, I have to thank my amazing and wonderful friends, Kris, Paul, Shannon, Laura, Annette and Ray. Between them they have been a rock to lean on and a wealth of information. I seriously don't know where I would be right now if it weren't for them.
In fact, this blog got it's title from Shannon, who promised me that Mason would, learn to fly. And I believe that with every ounce of my being.
The support we have recieved from everyone has been amazing! I am truely grateful to every one out there who has been thinking and praying for our little boy. Please continue to do that, as the road ahead of us is going to be long and trying.
I've been sitting here trying to figure out how to end this, and I seriously can't come up with anything. I guess I should just thank everyone who reads this, and hope you all enjoy watching Mason learn to fly.
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