Because she's aging out of the B-3 organization she is entitled to preschool services, the state of Connecticut is required to ensure that she receives services in the most convenient and helpful way for her so that means that they pay to have her put in preschool as opposed to requiring us to seek outpatient therapy services for her at the hospital ( which we do anyways , because we love her PT at ccmc)
Per usual when the state decides that they're going to pay for something they also decide that they are entitled to all types of information and answers which I have no problem providing....
So we have been going through this transition process with the Wethersfield Board of Education (they get all the 'answers' and determine if Sophia is elligable to special education services)
As her mother I really do not feel that my three-year-old child is ready to be in a preschool program. I'm not there, she's being cared for by strangers, surrounded by strangers, in a strange building, in a strange place, for hours every day...... without Mickey Mouse..... without any of the comforts of home that she's used to, without the ability to speak, defend herself or let her preferences be known.
If my child was not special-needs I would never put them in a preschool program at three years old as a parent it's not something that I would do. I would spend the time with my child...Being special needs or not really wasn't the issue for me here.... it's just that I don't feel that three-year-olds belong in a preschool program and if I can teach them at home I would rather do that I would be actively engaged with my" typical" three-year-old child, teaching them letters numbers and shapes at home I wouldn't leave that up to a stranger and I certainly would never pay out-of-pocket for it....
So I wasn't about to let the state bully me into doing something with my child that I wasn't comfortable with...
Yet when I talk to people about holding her back from the preschool program I got the looks and the held breaths, are you sures and again and put in the position where I have to defend that I know what's best for my child and that what's good for other kids and what's good for the masses isn't good for my child. Think about it by the time that most people put their kids in school they can eat by themselves, drink by themselves, tell someone one if something hurts or if they're being bullied, they can let people know that they're hungry or that there sad or that they missed their mom.
They can come home and tell their mom if someone is touches them in an inappropriate place or done something inappropriate in front of them. They can come home and tell their parents if they had a bad day at school or if their stressed out...
They can come home and open their mouth and tell their parents anything about their day all of those things are taken from my daughter. Imagine your child without any of those tools would you feel safe and comfortable trusting them with complete strangers for hours on end. In diapers with a bottle in school?!?! I really don't think you would!!!
So we have been going through this transition process with the Wethersfield Board of Education (they get all the 'answers' and determine if Sophia is elligable to special education services)
As her mother I really do not feel that my three-year-old child is ready to be in a preschool program. I'm not there, she's being cared for by strangers, surrounded by strangers, in a strange building, in a strange place, for hours every day...... without Mickey Mouse..... without any of the comforts of home that she's used to, without the ability to speak, defend herself or let her preferences be known.
If my child was not special-needs I would never put them in a preschool program at three years old as a parent it's not something that I would do. I would spend the time with my child...Being special needs or not really wasn't the issue for me here.... it's just that I don't feel that three-year-olds belong in a preschool program and if I can teach them at home I would rather do that I would be actively engaged with my" typical" three-year-old child, teaching them letters numbers and shapes at home I wouldn't leave that up to a stranger and I certainly would never pay out-of-pocket for it....
So I wasn't about to let the state bully me into doing something with my child that I wasn't comfortable with...
Yet when I talk to people about holding her back from the preschool program I got the looks and the held breaths, are you sures and again and put in the position where I have to defend that I know what's best for my child and that what's good for other kids and what's good for the masses isn't good for my child. Think about it by the time that most people put their kids in school they can eat by themselves, drink by themselves, tell someone one if something hurts or if they're being bullied, they can let people know that they're hungry or that there sad or that they missed their mom.
They can come home and tell their mom if someone is touches them in an inappropriate place or done something inappropriate in front of them. They can come home and tell their parents if they had a bad day at school or if their stressed out...
They can come home and open their mouth and tell their parents anything about their day all of those things are taken from my daughter. Imagine your child without any of those tools would you feel safe and comfortable trusting them with complete strangers for hours on end. In diapers with a bottle in school?!?! I really don't think you would!!!
Every time I brought up the subject of what I thought was right for my child and trying to alter the idea of putting Sophia in preschool I was immediately met with "well other kids… And well for most moms… And you know everybody goes through this…"
One day in the middle of a therapy session I flipped out on my therapist saying listen ...
"I don't give a flying rats ass what other moms have to do I don't give a flying monkey fuck about what other kids do or what's typical for them or what works and what doesn't work I just simply do not care about anything pertaining to any child other than my own and what I feel is right for my child. Sophia is one of 54 children in the world with her disease not a single one of them currently living in the state of Connecticut so I would love to know how all of these people in my life pretense from time to time like they know what's best or even that their experience is relevant because as far as I'm concerned I'm on a level playing field with these professionals they know as much about my daughter is I do if not less and most circumstances I am the smartest person in the room when it comes to my daughter doctorates be damned.... "
I've had learned fast and the hard way that I am the biggest loudest supporter of my child that no one knows her better than I do and I cannot let people push me around into making decisions for her I cannot be pressured into what other people think might be right..
"I don't give a flying rats ass what other moms have to do I don't give a flying monkey fuck about what other kids do or what's typical for them or what works and what doesn't work I just simply do not care about anything pertaining to any child other than my own and what I feel is right for my child. Sophia is one of 54 children in the world with her disease not a single one of them currently living in the state of Connecticut so I would love to know how all of these people in my life pretense from time to time like they know what's best or even that their experience is relevant because as far as I'm concerned I'm on a level playing field with these professionals they know as much about my daughter is I do if not less and most circumstances I am the smartest person in the room when it comes to my daughter doctorates be damned.... "
I've had learned fast and the hard way that I am the biggest loudest supporter of my child that no one knows her better than I do and I cannot let people push me around into making decisions for her I cannot be pressured into what other people think might be right..
So one day I tell people you know what either she gets home services, we homeschool her or she gets nothing and I walk....
I just woke up one morning and decided I don't care what any of you think I don't care what any of you will do I don't care with the repercussions are I will pay out-of-pocket to homeschool my child if I cannot get homebound services for her through the school system..... but I will not and cannot be pressured into doing something with my child but I'm not comfortable doing....
I cannot risk the progress that we have made. I cannot put her in a position to digress with skills or her communication. I just can't afford to lose a single skill that I've spent the past 2 3/4 years fighting for with her.. That IS EXACTLY what would happen if I put her in school and she wasn't being properly watched or properly communicated with, if she felt like she wasn't being heard or she gets overly frustrated she clams up stops trying and we would lose things.
This is not a risk I'm going to take under any circumstance!
I just woke up one morning and decided I don't care what any of you think I don't care what any of you will do I don't care with the repercussions are I will pay out-of-pocket to homeschool my child if I cannot get homebound services for her through the school system..... but I will not and cannot be pressured into doing something with my child but I'm not comfortable doing....
I cannot risk the progress that we have made. I cannot put her in a position to digress with skills or her communication. I just can't afford to lose a single skill that I've spent the past 2 3/4 years fighting for with her.. That IS EXACTLY what would happen if I put her in school and she wasn't being properly watched or properly communicated with, if she felt like she wasn't being heard or she gets overly frustrated she clams up stops trying and we would lose things.
This is not a risk I'm going to take under any circumstance!
So basically with nothing more than ruthless determination I decided to single-handedly take on the Wethersfield Department of Education. I set appointments with my pediatrician and with Sophia's neurologist to discuss my concerns I did my research and found out that all I need his a letter from her doctor or a doctor stating that they agree with me , that Sophia would be put at risk if put into the school system and that we need homebound services for her .
In the days leading up to my first transition meeting our B-3 therapists are coaching me "try not to be too aggressive, you get more flies with sugar than you do with salt!"
Basically telling me to tone it down. I guess they thought i was going to jump in and rip someone's throat out as soon as they show up for our meeting...
In their defense though I have not been shy with them about what I want for my daughter nor have I been shy about the fact that I don't like being pushed around or when people try to put Sophia into their square of acceptability ...
Basically telling me to tone it down. I guess they thought i was going to jump in and rip someone's throat out as soon as they show up for our meeting...
In their defense though I have not been shy with them about what I want for my daughter nor have I been shy about the fact that I don't like being pushed around or when people try to put Sophia into their square of acceptability ...
I take my first transition meeting with three people from the Wethersfield Department of Education Sophia's two birth to three therapists and myself in my home to discuss expectations and procedure and just the general overview of what is going to occur in this transition and I look all of these professionals right in the eye and tell them I don't care what it takes but I will get my child services in her home .
I calmly explained to them all of Sophia's health issues all of the potential health problems that could come up all of the things that I do for her and her day. Just exactly how dependent she is upon me and exactly what I would expect out of an aid if I were to put her in school and then I finish it all up by telling them that "if I did not feel that Sophia is properly serviced I will walk on the spot .
I have a plan to submit her in kindergarten only when and if I feel that she is ready for that. I am not attached to the idea of preschool and I am simply allowing this meeting to occur to test the waters ..."
I calmly explained to them all of Sophia's health issues all of the potential health problems that could come up all of the things that I do for her and her day. Just exactly how dependent she is upon me and exactly what I would expect out of an aid if I were to put her in school and then I finish it all up by telling them that "if I did not feel that Sophia is properly serviced I will walk on the spot .
I have a plan to submit her in kindergarten only when and if I feel that she is ready for that. I am not attached to the idea of preschool and I am simply allowing this meeting to occur to test the waters ..."
They all seem to agree with me that Sophia does seem to be on the small side and that she seems to be kind of delicate and they informed me that if I can obtain this letter that they have a system set up where they send people to the house and she will get her full preschool day at home with me and I'm thrilled when I hear this!!
When the meeting is over my therapist congratulate me and give me hugs on being so great in my delivery was amazing and I did everything just right but I did things my way I said it the way I wanted to say it. I came across how I wanted to. I didn't listen to their coaching and listen to their tips and listen to their help because I didn't give a shit if these people were overwhelmed or thought I was intimidating they do this all the time. I need to be mama bear first always, after that I can be kind and sweet and well mannered. But not until I know I don't need my "teeth"
Now when I say "team Sophia" I call it a team for a reason because all of my medical professionals for the most part admit that they don't know very much more than I do about this they look at me as an ally they look at me as someone who's an equal to them when it comes to Sophia's treatment and that's absolutely key in Sophia's success.
So I knew that I wouldn't have a hard time getting this letter because all of her doctors take me very seriously and I don't have to pull out my muscle and my attitude when it comes to them they just hear what I have to say and take it for what it is. I schedule a meeting with Sophia's pediatrician to explain the situation and my concerns and without question or hesitation she write me the letter that I need, I have it in my hands within 24 hours of my appointment. My therapists are completely in shock that my pediatrician didn't fight me tooth and nail to give me the letter and I call a member of the Wethersfield school board to inform them that I have in fact obtained the letter and that we need to proceed with homebound services. They didn't sound surprised. but they couldn't really believe that I managed to get it all done so fast....
Approaching this Friday is our second transition meeting... this meeting will have five people from the Wethersfield school board, Sophia's birth to three therapists, myself and Sophia all in my home to discuss therapeutic techniques and approaches that have and haven't worked in the past. to discuss Sophia's progress overall and so that we can formulate some sort of battle plan for moving forward in the future.
As of May 1st Sophia will be in preschool! She will be receiving preschool services here in our home with me as her primary educator working in conjunction with therapists.. speech therapist, physical therapist and occupational therapist from the school as well as Sophie's preschool teacher coming in meeting with us once a week..
Honestly I'm terrified.... I don't know if I'm making the right choice.... I don't know if I should have me put her in school ... No I'm staying true to what I know that she needs......
But every single victory for her that I make, cuts myself down.. NOT because I'm not happy or proud, she's going to get what she needs to succeed.
But underneath my pride is pain because it's just one more thing she can't take part in. I guess in my mind its irrelevant that I wouldn't have submitted a typical child to preschool I never would've done it anyways I just know myself I wouldn't . But somehow Sophia not being able to go into preschool keeps me up at night .....I think maybe should like the kids, maybe she would like environment , maybe she would have fun, maybe she would like to be away from me she might get sick of me....
None of that really matters though.... the point is i'm much more comfortable with my choice to keep her here.
I'm confident in my choice that this is what's right for her and I'm confident in my ability to keep her socialized with other kids so I guess as usual I'm just following my heart blindfolded... Parenting by faith not by sight.
I'll be really honest there's not really a whole lot more besides that feeling in the pit of my stomach that's guiding me on this.
My family, my medical team, my friends, even my fiancé, everyone looks to me to decide how they feel about things and for me to be their compass as to what's right and what's wrong for her. They'll support me 110% that's not a question but it is all on my shoulders to make these decisions. Her father would help me in anything but he knows that I am the primary caregiver that I am the one that's going to be doing it so he follows my lead .
It's nice because when things go right, I get to take the credit, my name goes up in shining lights and everyone congratulates me for a job well done but its my skin if this goes wrong and I don't even know homeschool could go wrong but I guess that's just my mind and the way that things work, the way that I think. The sky is always falling.... lol
ill let you guys know how things go Friday!!
thanks so much for reading! ill be redoing the page soon , maybe making a website!! stay tuned :)
So I knew that I wouldn't have a hard time getting this letter because all of her doctors take me very seriously and I don't have to pull out my muscle and my attitude when it comes to them they just hear what I have to say and take it for what it is. I schedule a meeting with Sophia's pediatrician to explain the situation and my concerns and without question or hesitation she write me the letter that I need, I have it in my hands within 24 hours of my appointment. My therapists are completely in shock that my pediatrician didn't fight me tooth and nail to give me the letter and I call a member of the Wethersfield school board to inform them that I have in fact obtained the letter and that we need to proceed with homebound services. They didn't sound surprised. but they couldn't really believe that I managed to get it all done so fast....
Approaching this Friday is our second transition meeting... this meeting will have five people from the Wethersfield school board, Sophia's birth to three therapists, myself and Sophia all in my home to discuss therapeutic techniques and approaches that have and haven't worked in the past. to discuss Sophia's progress overall and so that we can formulate some sort of battle plan for moving forward in the future.
As of May 1st Sophia will be in preschool! She will be receiving preschool services here in our home with me as her primary educator working in conjunction with therapists.. speech therapist, physical therapist and occupational therapist from the school as well as Sophie's preschool teacher coming in meeting with us once a week..
Honestly I'm terrified.... I don't know if I'm making the right choice.... I don't know if I should have me put her in school ... No I'm staying true to what I know that she needs......
But every single victory for her that I make, cuts myself down.. NOT because I'm not happy or proud, she's going to get what she needs to succeed.
But underneath my pride is pain because it's just one more thing she can't take part in. I guess in my mind its irrelevant that I wouldn't have submitted a typical child to preschool I never would've done it anyways I just know myself I wouldn't . But somehow Sophia not being able to go into preschool keeps me up at night .....I think maybe should like the kids, maybe she would like environment , maybe she would have fun, maybe she would like to be away from me she might get sick of me....
None of that really matters though.... the point is i'm much more comfortable with my choice to keep her here.
I'm confident in my choice that this is what's right for her and I'm confident in my ability to keep her socialized with other kids so I guess as usual I'm just following my heart blindfolded... Parenting by faith not by sight.
I'll be really honest there's not really a whole lot more besides that feeling in the pit of my stomach that's guiding me on this.
My family, my medical team, my friends, even my fiancé, everyone looks to me to decide how they feel about things and for me to be their compass as to what's right and what's wrong for her. They'll support me 110% that's not a question but it is all on my shoulders to make these decisions. Her father would help me in anything but he knows that I am the primary caregiver that I am the one that's going to be doing it so he follows my lead .
It's nice because when things go right, I get to take the credit, my name goes up in shining lights and everyone congratulates me for a job well done but its my skin if this goes wrong and I don't even know homeschool could go wrong but I guess that's just my mind and the way that things work, the way that I think. The sky is always falling.... lol
ill let you guys know how things go Friday!!
thanks so much for reading! ill be redoing the page soon , maybe making a website!! stay tuned :)
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