Holland and Eden are going to be three years old in less than three months. It's hard to believe really. At three, they will no longer eligible for home based early intervention services. Eden's IEP is next week, where we will discuss options and come up with a plan for next fall. You have no idea how difficult this is for me.
As far as I can understand so far, these are my options (listed in order of how "restrictive" they are:
1. Eden could attend the Hearing Impaired preschool in Redford Union, with a full time aide. This program is half-days, five days a week. It is the most restrictive option in that it is a "center-based" full time special education placement, outside of our school district.
2. Eden could attend our district's ECDD preschool. This is also a full time special education preschool program. It is cross-categorical, meaning that there are children with a wide variety of disabilities, both physical and mental. The majority of the children in this program would likely be nonverbal.
3. Holland and Eden could BOTH attend at "regular" preschool that we would pay for, and we could take them to the Early Childhood center for OT, PT, and ST (speech therapy).
4. We could keep them home for another year and take them to the center for school-based OT, PT, and ST. Next year, at age four, they will be eligible to attend the free "at-risk" general ed preschool in our school district.
Although there are certainly advantages to each option, we are heavily leaning toward option #4, in conjunction with their private therapies.
I don't like options 1 and 2 because Eden could attend, but Holland could not. I don't like option 1 because I feel like 5 days a week is too much for my 3-year-old, it's like 20 miles away, she would have to ride a bus, she wouldn't have exposure to normally developing language peers, she is so little, and she can't tell me if anything goes wrong. That said, option 1 is also the best in some ways. I have visited the program and have met several of the consultants, and have all nice things to say. The classes are very small, they take great care of the kids, and seem to be really accommodating and caring.
Another downfall to options 1, 2 and 3 is that any preschool program with a group of other 3-year-olds is a cesspool of germies and sickos. Kids are sick. A lot. My kids are no different from other kids, except that what looks like a cold on another kid ends up putting us in the hospital for 3 WEEKS! I can't do that again.
Ruminating about all of this brings up the inclusion issue. I've been meaning to post about this for a while, but never have enough time. I work as a school psychologist, and have a strong bias toward inclusion - or mainstreaming kids with special needs into the general curriculum. I do not think that kids with disabilities should be segregated from their peers, particularly in instances when their only disability is physical.
By age 6, all things considered, I hope to have Holland and Eden in a regular kindergarten in their neighborhood school. Eden will likely need an aide, at least part time, to assist with her physical needs such as using the bathroom, getting in and out of her walker and wheelchair, etc. This is assuming by then that Eden has developed more language and her cognitive abilities are intact.
But am I being too optimistic? Should I be assuming that a general ed teacher will be willing to accommodate her in a regular classroom? Will they take the time to get to know her and to figure out what her strengths are? Will they love her and want to help her? Or will they see her as another burden in an already stressful setting? Will they be unable to see past her limitations to recognize her potential?
And what about preschool? Even if I delay it until they are 4, I still need to decide whether I want to put them in a regular preschool setting, possibly with an aide for Eden, or if I want to go with options 1 or 2 and have them split up. I really hate the idea of splitting them up and having them in completely separate places. I also hate that some preschool teachers might be unable or unwilling to give Eden a chance. I hate that in either setting, general or special ed, we parents have to rely so much on the compassion and abilities of the teacher. It's such luck-of-the-draw. A good or bad teacher can make or break the setting. I don't really care so much whether it's general or special ed. I just want good, quality teachers, who care about my kids. And boy have I seen some good teachers. But boy have I seen some bad ones too.
I am so afraid. I want everyone to love them, and to want to help them. I feel helpless at the lack of control I have over the situation. I wish I could protect them forever from the mean, ignorant people out there who will judge them based on their disabilities. Most of all, I wish I didn't have to worry about any of this.
30 comments:
As an occasional reader from Texas I'm not certain of your options. I know here we have a school www.shelton.org for intelligent kids with learning differences. If one child from a family is admitted, they give special consideration for all siblings even if they don't have learning differences. They are for 3 year olds - 12th grade and the kids who attend go to some of the best colleges in the country. I know when I have met someone from the school my first thought is to what a great education they have and in most cases they can be fully mainstreamed after a few years or if nothing else, by college. I know this is located no where near you, but maybe they could suggest other schools near you that would fit your needs.
Coming from someone who has NO direct experience in your situation, I'd lean towards waiting another year, too. There is no rush, and when you do decide to take them to preschool - no matter what type of preschool - speak to the teacher face-to-face to gauge how the teacher may cope. Based on what they tell you you may be able to better determine what is best for the girls. Good luck!
I'm going through the same thing with my little one too. I know you write things down on the IEP, but really, it's the teacher in the classroom that, in the end, matters the most.
I go through this EVERY SINGLE year and my kids have no physical challenges. Each spring I start obsessing about what teacher my kids will have next year, do I request the teacher with the better academic standards but is too strict or the teacher that is nice and will like my kid for the funny, bright kid he is but can't challenge him to achieve academic greatness? When it comes down to it I want to keep them home with me and protect them from the big bad world.
Hi Billie,
I can't imagine having to make this decision... and I think that if I were in your situation, I also would lean towards #4. Although we have been receiving home-based services, they are limited in our district and we have already been doing center-based in addition to what we receive at home. Thankfully, that is for both girls. For your girls, #4 sounds appealing for many reasons (I'm thinking a lot about the germ factor and keeping the girls together and monetary reasons); but it also exposes them to the center and better prepares them for other out-of-the-home experiences. (It's not full-day, it's not overwhelming them by doing center AND preschool, and it's not separating them.) Even limiting them to the center would expose them to more germs... but on a limited basis. After another year, you still would have the same choices in addition to at-risk preschool - but you also will have seen how they've adjusted to going to the center, how they've adjusted (or not) to more germs, etc.
Kudos to you for thinking all of this through. I also have seen a great many children in inclusion setting, and I understand the benefits of this vs. being in a setting where a child's disability is better understood (i.e. a specialty school or program). It is so hard to predict where a child would best flourish... it is so hard to predict where you will find the best teachers who will both challenge and support your children.
There is no right answer. There is no right choice... it's just what you feel comfortable with. And as I've seen with many families at my work, remember that you can ALWAYS change your mind and transfer schools or programs.
Lastly, I am so happy for your children that you have the educational background that you do. They have the very best advocate they could ever ask for! I'm sure that as you were going through your schooling and your jobs, that you never imagined that this (the care of your own children) is what you were preparing for! :)
(sorry I got so long)
Billie -
My heart goes out to you. We just went through Tanner's IEP last month, and it was heartwrenching for me. Our choices weren't quite as varied as yours (we already have them in daycare, so the germ issue had been nixed).
What we learned was that we had to chose what was right, and odds were that the staff would agree. It was first suggested to us that Tanner should attend a therapy preschool about 30 minutes by bus from his current school 3x/week. That would mean pulling him out of his current school. That didn't sit well with us, at all.
Ultimately, the school is providing therapy at their daycare. They can also do therapy at home for kids who are at risk for exposure to germs. Keep that in mind!
Finally, we were told if they did take Tanner into the preschool program, they have 50% of the class as peer models, and usually they will accomodate a twin into one of those spots.
I hope that helps - it was one of the most stressful times for me in this whole preemie run.
Three has always seemed like an awfully young age to be sending toddlers off to school for any amount of the day. At that young age, why not look into the curriculum the preschool would have and see if you can incorporate that into your daily routine (a sort of homeschooling lite)? Maybe you could also get a part-time helper, perhaps a highschool student, who would come by a couple days a week to give you a break. My sister did this for several years for a child with severe learning disabilities, CP and cystic fibrosis, when she graduated high school the school district hired her on as his aid.
I'll keep all of you in my thoughts - your girls are fighters and they will help you know when and how to fight for what is best for them.
I've been reading your blog for a couple of weeks (and have checked out all of the archives, too) and am awed by your family. Your girls are so beautiful, and true miracles!
I live in the UK, where children don't start school proper until they are 5 (or rather, they don't HAVE to start school proper until they are 5; most will start when they are 4, turning 5 in that school year). Consequently I don't think you have anything to worry about if you keep the children at home for another year. Obvoiusly the situation is slightly different for you, with their needs, but a lot can happen in a year!
I can understand why you wouldn't want to split Holland and Eden up; my little sisters (they're not so little now) are twins, and although they went to the same school, the school put them in different classes against my parents wishes, resulting in serious stress for all concerned. Ultimately they were put in the same class again, and when they moved on to secondary school (aged 11) they were in different forms, and were absolutely fine.
I firmly believe that there should be SEN provision available for those who need it, but I also believe that - where possible - inclusion is a much better approach. Eden has physical difficulties, yes, but no doubt she would thrive with other so-called 'normal' children of her age.
The way I look at it, nothing is ever set in concrete. You can try Eden in mainstream, and if that doesn't work then she can always transfer to the special school.
Good luck! Whatever decision you ultimately make you have the welfare of the girls at heart, and that's the most important thing.
:)
One thing you may look into is a Montessori school. They are very inclussive. My daughter attended one and they had one little boy with severe CP and one with mild CP. They had other students with disabilites as well but also students without disabilities. They were all in the same classroom and the children all learned to help each other. It was really amazing to watch all the kids work together and support one another. For preschool they usually offer a twice a week program that may work for you.
Ugh, I hate this three year old change, too. Darsie will be going to a preschool at the school district next year. It is a couple of hours four days a week. It does seem like a lot, but Darsie LOVES her preschool now which is two mornings a week. They want her to ride a bus, too, but I think I will just drop her off and pick her up.
You definitely have many more factors involved in your decision than ours, so good luck!
I had thought about looking into a Montessori school, too, which I still might for the summer.
Hello Billie,
This is a hard decision. In the end, what your heart says is right. Any choice you make will be the right choice as your girl will benefit and gain life experience in any of the options.
Honestly, I would say keep them home for another year. Don't rush them as they are already getting social development from all they go through in their other programs. They will be better able to handle the physical and emotional challenges in a year, and will be able to communiate their needs or troubles to you at that time.
Exposure to the germs is always a scary thing. Let them get stronger first.
Thank you for taking the time to share Eden and Holland with us. Best wishes as always.
Billie,
I have spent the last year trying to find a preschool program to meet my daughters needs and have had great difficulty, I have written to papers. our mayor the ministry of social services etc trying find a solution to having a special needs child welcome in the community. You guys have had rough time lately and you have seen how the girls are still fragile and need to be kept from all the dreaded colds and germs. Another year at home won't hurt the girls, you do so much with them at home that they really aren't missing out on too much. My daughters AV therpist told me to ignore everyones recommendations and that Elizabeth will get more from me working with her at home than she will get in preschool. I take my daughter to lots of play groups and gymboree so she can socialize with other kids and I can help keep her hands clean and keep her away from the kids with the runny noses. Elizabeth was very fearful in the beginning of all the kids running around as she is not walking but over time she is becoming confident. It gives me great joy to watch her being assertive and not letting the kids take her toy. It would be a shame to split the girls at different centres and it would be very hard on you as well. Eden is bright girl and needs to be around her peers so she can watch and learn from them. If you are worried about hem missing out hire an ECE for an am program at your house and borrow some of your friends kids, you can still be on germ patrol and the girls can participate in group activities and you don't need to do the planning.
Good luck its a difficult decision.
Angi (mom to busy-lizzy)
Hey Billie! I miss you guys so much! Anyways, I like option 3 or 4. I would only do 3 if you found a great preschool and you only went one or two mornings a week. It would be nice to have them home one more year too and keep them together. I would push for mainstream for as long as you can untill or unless it doesn't seem to work. Love ya!
Hi Billie.
I don't have any experience with disabilities, but in my home country -Italy- it is very common to keep children at home until they are 4 or 5 or even 6 years old. I think that if they need more time they should be given more time. And it is true that kids in daycare get sick a lot. Why not wait a year and then start sending them to a school for only a few hours each week to see if it is beneficial for them and if they like it?
Billie, Every single decision you have made for your girls has been well thought out, and looked at from every possible angle. Give yourself some time and go with your gut! I myself don't see how anyone could not LUV those two girlies, but I also understand your fears. Keep your chin up and ENJOY the summer!!!! Luv Liz
You will make the right decision.
I know you will.
You are intelligent and sensitive, and you will make the right choice for both your girls.
I love you.
Kendra
You make me want to become a teacher now! I, of course can not imagine how these kids can not be loved by everyone!
I definitely agree with the inclusion idea however I understand your concerns about judgement. You have to remember that Holland will not take anyones s--t and Eden will kill them with her smile.
You somehow find the strength to continue to make the best decisions you know how. And remember, your first decision may not be what works best, but you have time to make changes if necessary.
The thought of seperating them kills me.
looks like your getting some good feedback. i've got a little guy with a disability and I used to be a full inclusion specialist (therefore I definitely in favor of inclusion when possible). He just started preschool this year at 4--we kept him home an extra year. I felt terrified the first day of school. i wanted to keep driving and kidnap my own son and take him away. but it turned our great. and if it wasn't great, we would ahve pulled him out and tried something else. if you have a teacher who is open, it makes all the difference. sometimes you just have to follow your gut and then makes amends as needed. seems like the girls are thriving and have developed so well. one step at a time...
Billie, I was just talking to Miss Marley's teacher last week in regards to the same thing. PRESCHOOL! What a scary word. There is just no way that I will put Little Miss Marley on a school bus. Maybe when she is like 6 and she can tell me she wants to be with her friends or something. I am scare too that she won't be able to tell me if someone was mean to her or other stuff that I don't want to think about. Even though we have one more year at home I need to start preparing and looking into our options. I am such a planner and I want to be prepared. Maybe staying home one more year is a good idea. I know you will make the right decision.
Love Ya,
Heather
Billie,
Off topic but I wanted to let you know that any time I'm feeling beaten, I come here and let your girls brighten my day. A farm animal inclusive tea party could brighten the darkest hour, I think.
(and did you mean the "ruminating" pun under the cow pic? Brilliant.)
oh billie... i hear you on the some teachers are SO great, and others just SO aren't... i know it's scary. you guys will figure it out, though and the girls will be great :-) love you guys, and miss you.
lisa
I can only begin to imagine what you must be feeling like. I am facing a similar thing with my two, but on a much, much smaller scale; and I am feeling totally overwhelmed by it.
I have been thinking the same things as you. I dont want to split mine up, I feel strongly that I want to send them together, at the same time. Some people are pushing me to send Kate first and keep Adam back, but it doesn't feel right inside.
And I hear you on the depending on others thing. My boy is such an intense child. What if the teacher hates him? What if the teacher doesn't understand him, or gets impatient with him.
Sigh. My heart goes out to you. If it is this difficult for me, I can only begin to imagine how hard it must be for you.
Sending you lots love
Txx
Hi Billie. I can't image what what your going through. I do know that British Columbia Canada has a program for "special needs" children where the parents get help especially if the child has permanent disablities or other needs. I'm on persons with disablites (low thyroid among other things) which is a lower "grade" less help but I can get help with dental, bottled water, vitamins, special dietary needs, 23 dollars toward a massage ect. so imaging for Eden and holland they would get so much more. anyways here the link. The BC gov doesn't tell you much but I know there is help out there. http://www.eia.gov. bc.ca/mhr/hsp.htm
Your kids are beautiful and having such awesome parents I just know the girls will bloom under such love.
I always had difficulty with daycare as a child. I have asperger syndrome and always had difficulty interacting with groups of children and had frequent tantrums. When I was six, one daycare worker even said to my mother, "You've got to do something about that one!" Luckily, in my case, my grandmother lived (and still does live with us) with my family for all of my childhood so I only rarely attended daycare. The city where my family lives now has an early education program which takes children with all kinds of developmental delays/disabilities. It's an excellent program and has a very diverse group of kids with disorders ranging from mild language or social delays to severe and multple disabilities. I wish such a thing existed in the town I grew up in. I would recomend (based on my experiences) that before enrolling the children in a program, make sure the staff are familiar (preferably had previous experience) with your girls' types of disabilities. Since you're children's disabilities are mainly physical rather than social or cognitive, they would likely fare better with non-disabled peers if these peers were accepting of their differences than in a disabled-only class. However (and I know this from experience as someone who was very socially delayed as a child and especially as an adolescent) putting children with kids their own chronological age when their developmental age is much younger usually does not result in friendships but rather being ignored or rejected. Also (and I'm sure you know this since you're a school psychologist) observe the program for a few days and make sure the atmosphere is not one where children tend to bully each other. Some programs that say they have a zero tolerance policy really don't enforce it.
Oh, Billie, I wish you didn't always have to weigh every little decision (not that this is a little decision, but it would be for non-preemie parents of non-disabled kids) and worry so much about whether or not you are making the right decisions. It occurred to me the other day, when you wrote about having to find metal slides because the plastic ones create static that interferes with Eden's cochlear implant, that us parents of relatively healthy kids take so much for granted. This post on top of that one just really brings it home how much you have to struggle with, take into consideration, spend time thinking about, that other parents have the luxury of never needing to contemplate.
But you are an amazing mom because, no matter what, you always do the contemplating. You always think of the girls first. And you always make the right decisions for them. I know you will do that for this one, too. H&E are so lucky to have such devotion from you and John.
I am not in your shoes, and frankly have never come close. I think no matter what comes your way, you will do what is best for both girls, even if it takes a couple trial & error decisions to find what works best. Don't be afraid to make the wrong decision because you'll know it is wrong within a short amount of time (I think your instincts will let you know very quickly).
Just a thought to throw into your hat though, if you put both girls in a regular setting and Holland instantly thrives, makes friends, plays with the other kids and so forth, but Eden has a more difficult time (knowing how regular kids will shy away from her), do you think that Eden will feel bad and left out as she watches her sister thrive while she is ignored?
I'm not saying she will be ignored, but knowing kids (and people in general) I don't think it would be an anomoly if it did occur.
Secondly, although seperating them sounds heart breaking, it may be good for both of them because it could allow each of them to thrive in their own environments, which are best suited for their individual needs.
I agree with you that individuals with disabilities should not be segregated, but I wonder if segregating them in the beginning could be more bebeficial, at least until they (especially Eden) can gain self confidence and is reasured in herself before being thrown into a situation where she will be the odd duck out, watching her sister thrive and make friends where she herself may not. Perhaps if she were in a special school she would have an easier time making friends, and those friends would 'stick around' even after she went to public school.
I think you will be the absolute best judge for everything. You love them so much and you know them both so well, you will find what is right for them.
Without knowing the girls personally, and only assuming what it might be like to have twins, I would probably lean towards taking this year off of school, and then doing option 1 or 2 next year.
Best to you. Hope you find the answers you're looking for, but even if none of us can help, I have complete confidence in your maternal instincts...your blog radiates your love for them.
:)
Hey Billie,
What a tough decision you have to make? I have been thinking about this and I am torn between the options and they are not even my babies, so I can't imagine how difficult it must be for you!?!? I agree with you thoughts about keeping them at home for another year. They are so young, plus the germs and all that you said. At least that way you will have another year to think about your other options and see how Holland and Eden progress over the nest year. Miss you! Amy
Just a comment from a Texas grandma--you can NEVER by too optimistic for your children.
My twin grandsons have almost no physical problems but have thrived on each other's support--especially the shy introverted one. Now at 9 they are in separate classes and have matured to the point they can each stand on his own.
As a grandma, I've determined never to rush my grandkids--so you can tell I'm for waiting at least a year before separating them.
Sue
Hi, I just wanted to share my experience here. I know that you are in support of inclusion-based environments. For children of varying abilities, this is a great idea. However, with deaf children, they really do need each other so that they don't feel left out or alone as in the only deaf person in the world. If Eden is mainstreamed, you can at least try to find other families that have a deaf child and make playdates with them or participate in Deaf community events. I grew up with the best of both worlds: by getting an education at a mainstream setting and attending Deaf community events, playing with deaf friends and having babysitters who signed. It made the world of a difference for me and instilled great pride in myself as a deaf person. =D
At my elementary school they segregated those with phsyical disabilities, but we argued this for from grade four on until finally they were put into classes with us and it was such a relief. It was so...amazing. And people came to see that they weren't burdens, but just people, like us.
If they segregate Eden and Holland, just fight for what you believe. Good will come out eventually. You have two awesome girls, and they have so much to offer to this world at such a young age.
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