I got an email from Autism Speaks...all excited about the new "puzzle piece pretzel" they are selling in stores now. What struck me immediately as odd, it that it is not gluten free. And you can make a pretzel gluten free. This is to raise money and awareness for autism. I think what it does is completely confuse the GFCF issue. Autism Speaks even has a 100 day kit, a kit that it designed to help parents the first 100 days after the diagnoses and it talks about the GFCF diet. But their new pretzel is not gluten free. WTF?
I get gluten free pretzels for A.J. at Mother Earth. They taste exactly like real pretzels. Anyway, I think it is just stupid to make a food that is supposed to benefit autism, but a kid with autism shouldn't eat it. Whoever thought that one up must have eaten their Wheaties for breakfast and probably shouldn't have...perhaps having a foggy day??
So I have talked to two new mom's this week. Just two. One I talked to at a bake sale for Owen's preschool and she told me that her daughter was diagnosed two days ago as being on the spectrum. Then today I popped in on my parents old next door neighbor and she told me their two year old is on the spectrum. Two moms...one week, both with autism stories directly relating to their immediate family. Does everyone's kids have autism now...or is it just that all the really smart kids, who also got their shots, have autism now? I need to set up a, "What I wish I would have done right after the diagnoses, post" because they both wanted more advice than I had time to give.
I just want to do a quick catch up with the methyl b12 shots. Much to my excitement, A.J. is definitely a responder. We have no fog these days. If I forget to give her the shot, she goes back in a fog. If I remember, (which now I always do) we have lots of words, conversation and happiness for A.J. and for me. The downer is she wakes up now when I give her the shots and she screams. Then she says it was only a little owie but she is pissed at me anyway. It is partly a control thing, and partly a, "I don't want to be stuck in the but with a needle, thing." I put numbing cream on her skin first and wait 20 minutes, but it doesn't seem to help much. It doesn't seem to numb my fingers at all.
So hopefully I guess she/we will just get used to the shots but it sucks that something that helps her, is also traumatic for her, and for me to do. But when she asked me if it was going to hurt I said, "yes, a little." So when I cut her fingernails later and she asked me if it was going to hurt and I said, "no." She trusted me to cut her fingernails.
She still gets lethargic in the afternoon sometimes and the taurine seems to help a bit with that, as do afternoon snacks and a short rest in her bed with a pacifier. Yes I did write pacifier, and if she wants one her whole life, that is fine with me. She only has it at home in bed and it helps her to self-regulate. She doesn't have tantrums, she calms her self by lying in bed for a few minutes, then gets up, puts her "paci" on her pillow and runs off to play. Her pacifier is no longer a baby calming device, it is a tool that helps my daughter to self-regulate. Everyone tries to give me advice on how to get rid of it, but I'm not going to. I don't care if society frowns upon it and no would have known anyway if I didn't write it in this post.
I am so excited about A.J.'s improvements and I need to share the the road to this improvement with the world. I wish I would have done all of this stuff when she was 2 and maybe she would not have regressed so much. Finally we are moving forwards instead of backwards and I see glimpses of a life for her that I imagined before the autism got bad and I suddenly was "redirected to Hollond" (see the poem.)
It is strange to be given something back that at times I was convicned, had been taken away from us. Now I think, yeah, she probably will get married and have kids and a job. Maybe, maybe. It doesn't seem impossible anymore, which is kind of weird. I am nervous to let myself get comfortable with that because I got comfortable with that when she was born and it was taken away from us. But here it is, creeping back in. "Normalcy."
I have never craved normalcy before. I always thought normal was boring. But if normal means freedom, self-sufficiency and happiness, than I want some of that for A.J.
Mabye this will all get taken away next week. But for now, I will watch her and let myself be filled with joy, just a little bit.
me.
Sunday, April 13, 2008
Friday, April 4, 2008
Still Trying to Figure It out
Now I know why mom's are always terrified of the autism diagnosis at first. We don't want our kids to be labeled and/or judged. Here is a letter i wrote to Brentley:
Dear _______________,
I have decided to enroll Avery in Brentley and I want to explain why. First let me tell you that A.J. loves school and she loves learning. I have worked very hard as a stay at home mom, to ensure that she is always in a loving and nurturing environment. She is in an environment right now where she is adored by her classmates and her teachers. As she is moving into kindergarten next year I needed to make sure that she will once again be in a wonderful nurturing, learning environment.
Bob, when we first spoke and you took me around the classrooms I listened quietly and carefully to everything you had to say. I was impressed when you told me that you don’t label your kids…and that some of them have learning disabilities and that these same children have gifts…and that the individualized approach to learning helped them reach their potential.
A.J. has to work hard on her fine and gross motor skills. She is guarded about expressing herself until she is completely comfortable in a situation. But academically she is advanced and has a photographic memory. She has an above average IQ and socially she is very sweet, quietly thoughtful, intuitive and well liked. I want to make sure that she is not judged in any way, because she is coming in from an ESE program. In her ESE program were impressed by Ms. Scott and how she was able to connect with the children and install an excitement and respect for learning. It has been a great experience for A.J..
Now I want A.J. to start fresh, without the stigma of a label. Any classes or therapy she does is done in the private sector. In school, I want her to feel like she fits in and can and will do what her friends do. She is physically and mentally able to be just another little girl in kindergarten. This is what I want for her. We don’t need IEP’s, we need a great school, teachers who are passionate about their craft and a place where as a mom I can be active and volunteer and be a part of her school experience. We need to be comfortable that Avery is completely embraced, welcomed and appreciated.
I think that not only does A.J. have the ability to learn, she has the ability to teach. She has a remarkable aura to her that is calming and happy. I feel like she will bring a lot to the table. A good school and wonderful teachers will quickly understand what an asset she is and what a positive presence she brings to a learning environment.
Thank you,
So that is the letter. I don't know yet if I am going to send her there. Today when I visited the school again, Bob got all prickly and cold when he started saying that they have turned away other children who have needed a more clinical environment. I wanted to wring his neck, as if he were suggesting that A.J. may need to be put in a cold grey concrete room with a straight jacket. I can't stand that attitude.
If we send her there it is because it has a good reputation for teaching, because it won't matter if we move...she won't have to switch schools because of zoning, and because we could never afford to send her there if she couldn't get a scholarship for having a disability. Maybe if she goes there for 5 years, she will be completely "integrated" and shed the diagnoses???? Ahhh, dreams. Hopefully I won't have to spend much time with the director as I am disgusted with his attitude over ese kids. Am I setting myself up for a fall?
me.
Dear _______________,
I have decided to enroll Avery in Brentley and I want to explain why. First let me tell you that A.J. loves school and she loves learning. I have worked very hard as a stay at home mom, to ensure that she is always in a loving and nurturing environment. She is in an environment right now where she is adored by her classmates and her teachers. As she is moving into kindergarten next year I needed to make sure that she will once again be in a wonderful nurturing, learning environment.
Bob, when we first spoke and you took me around the classrooms I listened quietly and carefully to everything you had to say. I was impressed when you told me that you don’t label your kids…and that some of them have learning disabilities and that these same children have gifts…and that the individualized approach to learning helped them reach their potential.
A.J. has to work hard on her fine and gross motor skills. She is guarded about expressing herself until she is completely comfortable in a situation. But academically she is advanced and has a photographic memory. She has an above average IQ and socially she is very sweet, quietly thoughtful, intuitive and well liked. I want to make sure that she is not judged in any way, because she is coming in from an ESE program. In her ESE program were impressed by Ms. Scott and how she was able to connect with the children and install an excitement and respect for learning. It has been a great experience for A.J..
Now I want A.J. to start fresh, without the stigma of a label. Any classes or therapy she does is done in the private sector. In school, I want her to feel like she fits in and can and will do what her friends do. She is physically and mentally able to be just another little girl in kindergarten. This is what I want for her. We don’t need IEP’s, we need a great school, teachers who are passionate about their craft and a place where as a mom I can be active and volunteer and be a part of her school experience. We need to be comfortable that Avery is completely embraced, welcomed and appreciated.
I think that not only does A.J. have the ability to learn, she has the ability to teach. She has a remarkable aura to her that is calming and happy. I feel like she will bring a lot to the table. A good school and wonderful teachers will quickly understand what an asset she is and what a positive presence she brings to a learning environment.
Thank you,
So that is the letter. I don't know yet if I am going to send her there. Today when I visited the school again, Bob got all prickly and cold when he started saying that they have turned away other children who have needed a more clinical environment. I wanted to wring his neck, as if he were suggesting that A.J. may need to be put in a cold grey concrete room with a straight jacket. I can't stand that attitude.
If we send her there it is because it has a good reputation for teaching, because it won't matter if we move...she won't have to switch schools because of zoning, and because we could never afford to send her there if she couldn't get a scholarship for having a disability. Maybe if she goes there for 5 years, she will be completely "integrated" and shed the diagnoses???? Ahhh, dreams. Hopefully I won't have to spend much time with the director as I am disgusted with his attitude over ese kids. Am I setting myself up for a fall?
me.
Wednesday, April 2, 2008
Trying to find kinder"garden"
Two weeks ago, AJ was drawing on a notepad with flowers lightly printed on the paper. I said, "Oh! are you drawing a beautiful Garden?"
She said, "No, I'm drawing kinder"garden" because kinder"garden" is beautiful!
Wow, what pressure...to find her a beautiful kindergarten...here is the journey...
We want her to stay at the school she is in now...Oakwood, where she participates in the ese pre-K program. We have applied twice for first, a choice seat (denied) then a zoning exemption which is only for 1 year and you have to reapply each year (denied). Now I am appealing the denials but I realize I need to also explore my other options.I want her to stay at Oakwood because there is a multi-age class right next to her pre=K clasroom. The teacher is excellent and if A.J. were to be in that class she would have the same teacher for 3 years and be in the same environment. She does much better when she is not faced by change...which is pretty standard for kids on the spectrum. If we are denied again... the school we are zoned right down the street is an "A" school, but so is the crap elementary school I went to. I am afraid she will get lost in a large overcrowded classroom of overwhelming kids. I want A.J. to be in a calm environment where she can learn and not be sad. Thats all I want. I guess that is a lot.
Soooo.....in the interest of exploring options should we be denied Oakwood, rather than just accepting the school down the street (who won't give me a tour.) I went to visit Brently school today. Let me tell you about Brently. I have heard about it around town, it is one of the best little private schools. BUT last summer I talked to the parents of a child, Neil, who was in A.J.' class and who is on the spectrum, (now he is in kindergarten). They said that Brently turned Neil away because he wasn't "independent enough". I was furious that they would turn him away. He is remarkably gifted, sweet and such a wonderful little boy. It was nothing short of scary to me that Brently would deem him not good enough for their school. I had actually called Brently for a tour right before this conversation with Niel's parents. When Oakwood called me to set up the tour, I told them that I had just heard that they don't take kids on the spectrum so thanks but no thanks and hung up on him. That was last summer.
Now here I am...taking the tour this morning and there were flowers all over the window to the kindergarten classroom making it look like a kinder"garden".
I know that I should boycott their school. But....but...I can't bare for A.J. to end up in a regular kindergarten class where she will get lost in the shuffle. If she ends up at the school down the street, then she will need an aid, maybe. I do and don't want her to have an aid. I want her to have one so that she can be helped. I don't want her to have an aid because I don't want her to feel like she is different from the kids and that she can't take care of herself. I was hoping that Brently would be a good alternative.
Brently will accept take A.J. in their school as she is so much improved these days. I think that at Brently she would be OK without an aid because the classroom environment was so calm and positive. But then again, I don't know if I can bare to send her to the school that turned away a smart and sweet boy on the spectrum. Neil needs an aid and doesn't communicate verbally. But I strongly feel like there should be a way to provide him an aid at this Brently. I think that private schools should be legally bound to provide the same help to kids with disabilities, that the public schools are legally bound to provide. It should not be legal to discriminate "privately" Tuition here is $5450 a year. They can get an aid.
Oh, what to do.
I did look into a Montessouri school but they were full. I wrote an email pretty much pleading with them to take A.J. and they didn't answer it. I will post the email below.
me.
Dear Bridgett,
I am writing to you because I have heard wonderful things about your school and I want to introduce my child to you. A.J. is 5 and is currently in an ESE pre-K class at Oakwood Elementary. This is her second year of pre-K there and she will be going into kindergarten in the fall. Because she has been there for two years I applied for, first a choice seat then a zoning exemption for her to say there. I was interested in the multi age class that is offered, but now that we have been denied twice we are looking at other options.
Our options are not bad. We are zoned for DK Langly, which I'm told is an excellent school and is about a 2 minute walk for us, but I have decided to apply for a McKay scholarship for A.J., and let me tell you why...
When A.J. was born she was amazing. She liked to look at pictures on the wall at 3 days old and strangers would tell me that I had a "remarkable baby" People would say that "She just looks so intelligent, you can see it in her eyes." Avery went on to know her letters, letter sounds and numbers by 14 months and would say them for people who would look at her in shock. A.J. had a photographic memory and from doing a United States puzzle a few times, memorized all of the states and some of their capitals. At age 2, she started to go into her own little world, as you have probably guessed, the world of autism. But through intense early intervention, she is now 5 and most people can not even tell she is on the spectrum at all. She has friends and her classmates yell, "A.J.'s here!" and run up to her when she walks in the door.
She is in the ESE class but did not qualify for it. When she took the aptitude test she scored as average and above average for her age level and I was flat out told she did not qualify for special ed. Since she did not qualify for services, I needed the autism diagnoses to get her the services, and so she was granted them. The therapy helped to "bring her out of her world and into ours." She is a very very smart little girl. The autism is very mild, she is lucky in that sense. The only "problem" the autism presents now is that it makes it hard for her to express herself easily. She still talks a lot and holds conversations and even makes eye contact. She understands completely, others feelings and facial expressions. But she will not yell or argue. She is passive and sometimes it takes a few moments for her to "process" a request before she fulfills it. This processing time takes a while because she has so much going on in her head. Sometimes it is like trying to get the attention of someone who is typing an email. You just have to wait for a sec. She does not required extra attention and does not need extra help.
I want Avery to be in a school with a small classroom size. I want her around children who are intelligent and kind like she is, and I want her to be able to fit in with her eccentricities. She loves to sing and play her keyboard. She draws elaborate pictures for hours and tells me wonderful stories when I ask her about them. Today at the park she drew pictures in the sand and exclaimed, "Look Mom, Angels are hiding in the sand!" Kiwi fruit are called "fireworks" and clouds are many different wonderful creatures and animals.
I wanted to try the multi age class at Oakwood, but now that we have been denied twice, and I will have to change schools, I realize that I don't want her to get lost in a huge classroom where she will not be noticed. She is such a good and smart little girl that she could just float about a class all day without being spoken to by a teacher and she wouldn't have a problem with it. I don't want her to go unnoticed or unchallenged. I think that A.J. would be a wonderful fit for Sun Montessori. I am working on the McKay scholarship and would be such a happy and grateful parent if you as a school would be able to have A.J. as one of your own and embrace her for who she is. Avery loves to learn, but she has a lot to teach also.
Thank you for taking the time to read this email.
Shena Hays, mom to Avery Jane Hays.
She said, "No, I'm drawing kinder"garden" because kinder"garden" is beautiful!
Wow, what pressure...to find her a beautiful kindergarten...here is the journey...
We want her to stay at the school she is in now...Oakwood, where she participates in the ese pre-K program. We have applied twice for first, a choice seat (denied) then a zoning exemption which is only for 1 year and you have to reapply each year (denied). Now I am appealing the denials but I realize I need to also explore my other options.I want her to stay at Oakwood because there is a multi-age class right next to her pre=K clasroom. The teacher is excellent and if A.J. were to be in that class she would have the same teacher for 3 years and be in the same environment. She does much better when she is not faced by change...which is pretty standard for kids on the spectrum. If we are denied again... the school we are zoned right down the street is an "A" school, but so is the crap elementary school I went to. I am afraid she will get lost in a large overcrowded classroom of overwhelming kids. I want A.J. to be in a calm environment where she can learn and not be sad. Thats all I want. I guess that is a lot.
Soooo.....in the interest of exploring options should we be denied Oakwood, rather than just accepting the school down the street (who won't give me a tour.) I went to visit Brently school today. Let me tell you about Brently. I have heard about it around town, it is one of the best little private schools. BUT last summer I talked to the parents of a child, Neil, who was in A.J.' class and who is on the spectrum, (now he is in kindergarten). They said that Brently turned Neil away because he wasn't "independent enough". I was furious that they would turn him away. He is remarkably gifted, sweet and such a wonderful little boy. It was nothing short of scary to me that Brently would deem him not good enough for their school. I had actually called Brently for a tour right before this conversation with Niel's parents. When Oakwood called me to set up the tour, I told them that I had just heard that they don't take kids on the spectrum so thanks but no thanks and hung up on him. That was last summer.
Now here I am...taking the tour this morning and there were flowers all over the window to the kindergarten classroom making it look like a kinder"garden".
I know that I should boycott their school. But....but...I can't bare for A.J. to end up in a regular kindergarten class where she will get lost in the shuffle. If she ends up at the school down the street, then she will need an aid, maybe. I do and don't want her to have an aid. I want her to have one so that she can be helped. I don't want her to have an aid because I don't want her to feel like she is different from the kids and that she can't take care of herself. I was hoping that Brently would be a good alternative.
Brently will accept take A.J. in their school as she is so much improved these days. I think that at Brently she would be OK without an aid because the classroom environment was so calm and positive. But then again, I don't know if I can bare to send her to the school that turned away a smart and sweet boy on the spectrum. Neil needs an aid and doesn't communicate verbally. But I strongly feel like there should be a way to provide him an aid at this Brently. I think that private schools should be legally bound to provide the same help to kids with disabilities, that the public schools are legally bound to provide. It should not be legal to discriminate "privately" Tuition here is $5450 a year. They can get an aid.
Oh, what to do.
I did look into a Montessouri school but they were full. I wrote an email pretty much pleading with them to take A.J. and they didn't answer it. I will post the email below.
me.
Dear Bridgett,
I am writing to you because I have heard wonderful things about your school and I want to introduce my child to you. A.J. is 5 and is currently in an ESE pre-K class at Oakwood Elementary. This is her second year of pre-K there and she will be going into kindergarten in the fall. Because she has been there for two years I applied for, first a choice seat then a zoning exemption for her to say there. I was interested in the multi age class that is offered, but now that we have been denied twice we are looking at other options.
Our options are not bad. We are zoned for DK Langly, which I'm told is an excellent school and is about a 2 minute walk for us, but I have decided to apply for a McKay scholarship for A.J., and let me tell you why...
When A.J. was born she was amazing. She liked to look at pictures on the wall at 3 days old and strangers would tell me that I had a "remarkable baby" People would say that "She just looks so intelligent, you can see it in her eyes." Avery went on to know her letters, letter sounds and numbers by 14 months and would say them for people who would look at her in shock. A.J. had a photographic memory and from doing a United States puzzle a few times, memorized all of the states and some of their capitals. At age 2, she started to go into her own little world, as you have probably guessed, the world of autism. But through intense early intervention, she is now 5 and most people can not even tell she is on the spectrum at all. She has friends and her classmates yell, "A.J.'s here!" and run up to her when she walks in the door.
She is in the ESE class but did not qualify for it. When she took the aptitude test she scored as average and above average for her age level and I was flat out told she did not qualify for special ed. Since she did not qualify for services, I needed the autism diagnoses to get her the services, and so she was granted them. The therapy helped to "bring her out of her world and into ours." She is a very very smart little girl. The autism is very mild, she is lucky in that sense. The only "problem" the autism presents now is that it makes it hard for her to express herself easily. She still talks a lot and holds conversations and even makes eye contact. She understands completely, others feelings and facial expressions. But she will not yell or argue. She is passive and sometimes it takes a few moments for her to "process" a request before she fulfills it. This processing time takes a while because she has so much going on in her head. Sometimes it is like trying to get the attention of someone who is typing an email. You just have to wait for a sec. She does not required extra attention and does not need extra help.
I want Avery to be in a school with a small classroom size. I want her around children who are intelligent and kind like she is, and I want her to be able to fit in with her eccentricities. She loves to sing and play her keyboard. She draws elaborate pictures for hours and tells me wonderful stories when I ask her about them. Today at the park she drew pictures in the sand and exclaimed, "Look Mom, Angels are hiding in the sand!" Kiwi fruit are called "fireworks" and clouds are many different wonderful creatures and animals.
I wanted to try the multi age class at Oakwood, but now that we have been denied twice, and I will have to change schools, I realize that I don't want her to get lost in a huge classroom where she will not be noticed. She is such a good and smart little girl that she could just float about a class all day without being spoken to by a teacher and she wouldn't have a problem with it. I don't want her to go unnoticed or unchallenged. I think that A.J. would be a wonderful fit for Sun Montessori. I am working on the McKay scholarship and would be such a happy and grateful parent if you as a school would be able to have A.J. as one of your own and embrace her for who she is. Avery loves to learn, but she has a lot to teach also.
Thank you for taking the time to read this email.
Shena Hays, mom to Avery Jane Hays.
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