Chasing The Answer

Guess what?

2010-06-21T21:58:00.000-07:00

According to some self-proclaimed 'expert' and woman that claims to be a retired teacher - Amber probably doesn't have autism.

Her expert opinion comes from a wonderful ability not to be able to get humor in writing - deduce when something is an absurd post - OR that some people really are honest, even if they aren't registered with a recognized organization.
Did I mention this was all over FaceBook messages- she's never spoken to me or my little on on the phone or in person? LMAO.

Yes, I know you're reading. I can bet you're going to comment, too. BUT, I'm going to delete you when I see you - you were a nasty, hateful woman- and if you follow me around the Internet, I won't have to say a thing. The people that know me and my beautiful girly will give you what-for.

I hate, hate Internet drama. But when you insult my child...that's lower than low and you deserve to be told off.

Changes to this layout

2009-09-10T05:37:00.001-07:00

I'm going to be changing up this blog soon to offer more information on Autism, Fragile X, and how it affects girls. I'll invite guest posts and there will be more advertising, too.

Many people have no idea how much it can cost to raise a child with autism. They don't know that many autism treatments are not covered by insurance and can be expensive. With that in mind I am going to be accepting advertising offers, reviewing products, and placing a donate button.

You'll never be asked to visit a sponsor, but just wanted everyone to be aware that there WILL be sponsors coming and more ads on the blog. Just so you don't go- Hey, did she sell out?

LOL

Looky!

2009-08-16T10:31:00.000-07:00

Jennifer Chait at Treehugging Family checked out my new Shop and wrote about it, too. She's a great writer, so don't just look at my link, Jennifer knows more about green and organic living than anyone I know.

She's not preachy, like some people who live greenly, which is one of the biggest reasons I love her posts.

Autism Awareness Shirt-By Me!

2009-08-04T15:29:00.000-07:00

I've been thinking about making this for a long time, we even taught Amber to say the caption :-)

I plan to make more designs, but this one will always have a special spot in my stony little heart. If you want one you can grab it at my CafePress store. I'll be adding more soon. Sharing the link would be much appreciated, too!

My store: Autopia!

New job! Feedback?

2009-03-20T11:58:00.000-07:00

New writing job!

NY Autism and Parenting Examiner.

Please visit sometime and give me your feedback. The opinions of other parents and thoughts drive me!

I Called It.

2009-03-07T19:03:00.000-08:00

Remember when I posted about the nut of a nurse my daughter has at her school?

Well, I had finally had it and called to complain. I explained about the whole situation and how unsatisfied I was with how the nurse was handling my daughter. The straw that broke this camels' back was a letter home about Ambi's rash on her lower back. That /rash/ happens to be a birthmark.

Guess what happens the very next day? Child Protective Services knocking on our door. Yep, friends and neighbors, the nurse had called them claiming that Amber told her I beat her with a BELT and left a HUGE bruise on her back.

Me. The same woman who makes a living writing about parenting. The exact person who spends her life writing about her daughter transparently on the WORLD WIDE web. Who spends every second of her time doing whatever she can to make life better for her autistic child. Who just shaved her legs for the first time in a month because she can't get a free moment.

I might yell, I might give one of my kids a swat on the bum when they try to kill each other. But a /belt/ hard enough to bruise? You have to be kidding me.

I was happy to show this woman Ambers' body to prove there were no bruises other than the standard ones on her shins from running into chairs and such. At least those are well documented at her school because THAT is where she gets them. I pulled down her pans, (yes she asked to see her rear) and ...wait for it...wait for it...

All that was there was the very same birthmark that the nurse claimed was a rash at first. Then I had to do the same for all of my other kids. It was probably the single most humiliating experiences of my life to have to strip my children for anyone other than a doctor. I was fine showing Amber, just to prove the nurse was a liar, but having someone think you'd beat a baby, god.

Of course they all had perfect skin. From there we had to show the home. If you had checked out the post where I talked about my inlaws messing us over, then you know that part of the house was still a wreck. Yeah, that looked great. Luckily their new rooms were in good condition, but the place where we stored the inlaws crap was messy. Yeah, she asked if it was always that way. Oh and if you have even ONE dish in the sink, they ask about that, too. I have 4 kids, there is ALWAYS a dish in the sink from one of them having a snack. Get over it.

On to the fridge. Yes, stocked. I wonder what she made of the Tapioca bread and the hemp milk? Oh no, hemp, maybe I'm trying to get them stoned!

Here's a few of the things we're under investigation for:

1. Birthmark that is a belt bruise. (stupid)
2. Pale skin and dark circles around eyes. (obviously my pale skin and dark circles inherited from my mother, her mother, and my grandmother need to be investigated, too.)
3. Swollen glands in neck. (another thing I need to be checked for along with the rest of my family. Genetic)
4. Amber has no glasses. (I guess the school forgot to tell them Ambi uses glasses for oragami practice)

Right now the whole family is joking that I need to take a picture of all of us with no makeup and with our heads lifted to show our necks a few days after being exposed to someone with a cold. We'll look like vampires that have gland infections. But at least that will get CPS off us, right?

Luckily we have contacts within the school system that I am sure will be willing to write letters about how we care for Amber. I'm just upset right now, but you know, I did call this.

Safety Giveaway

2009-01-27T09:12:00.000-08:00

Hey, all! I promised a giveaway, so stop by my Family Resource blog to enter. Tweet it, blog it, and share with anyone you know who would like to win a Car Seat ID tag/card.

Here's the link! http://www.familyresource.com/blog/2009/01/27/car-seat-id-giveaway/

Safety Tools For Special Needs Kids

2009-01-26T16:00:00.000-08:00

I found a site that offers a wide array of safety items. I was impressed! Bet you will be, too.

My Precious Kid

That is a link to their products that would be great for autistic kids. I read over the list and I agree with the choices wholeheartedly. Soon I will be posting a review of one product, the Teddy-bear shaped Child Locator. No,no I do not plan on losing Amber. Geez, everyone thinks that is how I am going to test this thing.

Give me a little credit. I would only try to lose her sister. [just kidding, Terisa, now stop jumping on my head, ok?]

Also, there is a giveaway coming from My Precious Kid really soon. Oh and it will be from my 'professional blog'. Seriously, I am a professional! Promise. Hey you all know I am a writer, now you will have to visit my job if you want to win something. Just kep it in an orderly line and don't lose your buddy.

Autism Awareness Charm Bracelet Giveaway!

2009-01-21T17:30:00.000-08:00

Hey all! I know, I know, I've been absent. With the new baby and the rest of the DirtMonkies going absolutely apesh**...er, bonkers, it has been hard to keep up. I have been watching Twitter and one of the Twits I am following...

Ok, hold on a second. Yes, I do call the followers Twits. Not in a bad way, mind you. In a sweet and fond way. Think of birds, then combine Tweet and Flit. Two things birds do. Now you have 'twit'. And of course the place is called TWITter.

BUT, as I was saying, one of my Twits posted this really cool link to an Autism Awareness Charm Bracelet giveaway on AutismLearningFelt. Go visit and enter! The charm bracelet is donated by Charm Factory, they have some cool autism charms!

Explain This...

2009-01-05T07:55:00.000-08:00

Today is the first day of school after the holiday break. Amber was so excited to get back to school. My husband told me about an hour after she got there, while I was upstairs, that her school called. Seems Amber's gland are swollen. We were not concerned because we've been through this before.

Amber's glands in her neck will swell with every little cold or tiny sign of illness. We've had her tested for lymphoma (sp?) and other assorted gland issues. She came out negative for all things. So, of course we weren't worried and assured the nurse she was fine.

Parenting Skills: FAIL.

I just got back from locking the door behind hubby. He's on his way to pick up Amboo because the nurse called and said that Amber has been in the bathroom 4 times with diarrhea. I mean, come on! The kid has been healthy as a horse since getting over the snotties, now she is pooping up the school? I told Rob (hubby) that these people must think we are horrible parents! We were joking around about how they probably think we are never concerned about anything.

Nurse-"Ms. Fletcher, Amber has ebola and is bleeding from her eyes."

Me-"Oh, it's fine, just send her back to class, her dad and I have seen this before."

Seriously, I bet they think we are horrid! But, I swear she hasn't been going and going like they say she is now. I'm just waiting for the county to come out to check on the kids because of this crap. They'll come out on a day when the dog or cats poop on the floor, the bird has gotten out, and the trash hasn't been taken out again. It'll also be the day before I'm paid so the fridge will have only mayo, mustard, and Ramen. I can't forget the godawful mess the kids make, so the house will look like a third world toxic waste dump.

Rob Jr will have chocolate all over him, taken off his clothes, imitating a refuge from Dirty-Naked Land. Terisa will be screaming and asking if I still love her. Amber will be pouring water on the table. Yeah, they'll all be in foster homes before we can explain it's US who needs the fostering and protection from the DirtMonkies!

Seriously, I'm worried now. We all know how schools can be. Now with her getting sick twice and us not sounding concerned, who knows? Maybe having so many kids and dealing with trivial 'sickies' and 'boo-boos' has made us too nonchalant.

Hm, New Amber Pic?

2009-01-02T18:39:00.000-08:00

The pic on the side is one of my favorites of Amboo. It is the one that appeared in Western New York Family Magazine when the article I wrote about our little one ran. The article was titled Chasing The Answer, just like this blog. :-) There was also another picture of Amber in her red coat, bundled up for snow play.

I love the picture, but I am thinking it is time to update. If I can get all of the Dirtmonkies to co-operate tomorrow, I think we'll have a picture day. Amber is such a ham when it comes to pics and so is her sister. In fact, I think I'll post some old pictures now!

I normally never posted old pictures of Ambi because she had strabismus (crossed eyes) and people would always ask if she was making a face. One eye crossed while the other did not. I was very sensitive about it, I felt she had enough to deal with already. But I feel more comfortable now, especially since most everyone who visits has a special needs child or is already a good friend.

Here we go...all of these are anywhere from a year or more old, so I really need new ones up!

Green, Green, Green!

2009-01-02T13:24:00.000-08:00

I have been looking for a nice green template for a while. Amber's favorite color is green, all shades. So when I saw this layout, I was pretty happy. The original had a lot of awful pink on it, so I tweaked it to make the blog more readable.

I like brown, find it soothing. Never thought I would.

Anyway, hope everyone likes it and can read it well without the eyeball bleeding that can happen with some layouts.

I'll be posting about the holidays shortly. More like when I can get away from the kids!

Amber's New Brother

2008-12-22T17:17:00.000-08:00

I'm sick, caught something from the kids. Some sort of stomach virus, so I am just linking to my personal blog that has pics of Lucas. I'll redo this later and put them here.

Lucas Kreed

Baby Coming!

2008-12-14T06:20:00.000-08:00

This isn't really Ambi related, but if you wonder where the posts have went for the next week, the hospital I'm going to for my c-section doesn't have internet. ARGH! I am taking my mini-laptop just in case I can pick up a wireless and to upload some pics on.

I go in on Tuesday and hope to be home Thursday evening or early Friday. They said no longer than Friday barring complications. I will try to update this with Ambi goofiness before I go!

Why, Oh Why...

2008-12-11T17:10:00.000-08:00

Why did Ambi have to come down with the snotties this week? I love my baby, of course I do, but you really have to know my little ray of sunshine to understand wy I want her to be in school everyday.

Yes, I want her to get an education. Yes, I want her to get therapy. Yes, I believe she needs her routine. I also firmly believe mommy needs a serious break, already.

This week has been nuts. Amber snotted her way into the house on Friday. Got progressively worse over the weekend, then perked up Monday morning. Not boogies, no coughing. I sent her merrily off to school feeling like a good mom because I medded her up 'just in case' she coughed at all.

Parenting skills: FAIL.

Two hours after school began we got a call from the school nurse stating Amber looked like a glazed donut from Hades come to attack them all. Ok, maybe not in so many words. but I like colorful descriptions. My husband is telling her that she was fine, but yes, he will come get her. We really have not a lot of faith in this nurse, she thought some chapped lips were signs of the Chicken Pox Apocalypse last month. Again, Parenting skills: FAIL.

Ambi is hacking like it's whooping cough. She snots into the house and all over me in a big, happy sickies hug. Yeah, this is looking to be a real winner of a week, especially when her dad informs me he told them we were keeping her out...ALL wEEK.

My first thought after that gem? Kill me now. Really. Put a gun to my head.

I promise you, I love my kids. It's just the thought of the three of them ganging up on me and hubby for an entire week with snotty faces that has me wanting to crawl into the nearest hole and hide. You see, I knew, KNEW that she would infect us all. Yes, I know, better us than the rest of the school district. Little germbags that kids are, one of THEM infected my pookie...you have to understand the need for vengence here.

No, I won't spike the milk cartons.

The worst of it all was today. Ambi spent all day needing no meds yestereday. No hacking cough, no snotties, and a great mood. She woke up this morning looking better than she had since last Friday. I was relieved, especially since each day she has been asking to 'Go to cool' woth that stuffed up voice. Pretty cute, but I couldn't let her go. This morning, though, I got up early, had her bath ready, gave her a dose of meds right before bus-time, only to have her begin the choking cough and wiping her fresh boogies all over her sweater. What the heck?!? Out I go to the bus to tell them I was wrong, she wouldn't need them today.

I thought Ambi was going to kill me for not letting her go. Couldn't do it. No way. I knew she would end up feeling worse and then they'd call for us to come get her. So, I promise to take her shopping for a Christmas tree instead. She lit up like the sun and school was forgotten while we readied ourselves for the big day ahead. Breakfast, dressing her siblings, and making sure that her Spongebob was ready to go. It was going to be a great day!

Parenting skills: FAIL.

From pulling out of the driveway the kids began fighting in the back. Buddy, the 2 year old, decided to beat Ambi with his bead toy. Ambi screeched, then hit him back. Teesie, the 4 year old, wanted to know if we were going to the store. Repeatedly...Are we going to the store? One store? Two stores? Are we going home?

And it didn't stop...all day. Kind of like this post, it went on and on.

Ambi IS going to school tomorrow. Nurse be damned. Oh, did I mention that right after the bus left, the cough and snots went away? Yes...they're gone, just like that bus. We're dropping her butt off tomorrow. And I am not looking back, not for at least 5 minutes, anyway.

Good Intentions From Sgt Mommy.

2008-12-09T19:40:00.000-08:00

Today was Amber's little sister's birthday. It is pretty hard to explain to Amber that she doesn't get a gift, but I am firm in the resolution I made as a kid. My mother had a friend with two girls whose parents would buy them both gifts for the others' birthday. I thought that ridiculous then and still do. Mind you, a small token is fine, like a coloring book and crayons, but the way I see it, the birthday is a special day for that child, not all of them in the house.

I know a lot of my family and inlaws think I am too hard on Amber. Luckily my husband agrees with the birthday thing. For one thing, can you imagine buying the same gifts for 4 children? Only if we had quads, thank you.

Sometimes even I think I am being hard on my girl. I know that life in general is hard for her. I do not think that her disabilities are an excuse for bad or spoiled behavior. She is treated the same as her siblings who are neuro-typical. There are always exceptions to the rules. Just not serious ones. I don't think that my rules for her are too much nor the punishments. Ha, as if she really kept in time out, anyway.

1. Pick up your messes.
2. Put your dishes in the sink when done.
3. Eat what mommy or daddy cooks for a meal. (no special exchanges)
4. Eat most of your dinner.
5. Don't beat your siblings to death with blunt objects.
6. Don't beat your siblings, period.
7. Do not tear up your siblings toys.
8. Tables are for glasses, not for...(you can finish that one)
9. For goodness sakes, please don't scream THAT loud.
10. No nasty words. (still working on that one.)

That's just the most important ones right now. All of the kids are expected to follow those and they're sort of unspoken, unless you count me fussing at them on a daily basis in an effort to beat them into their little brains. :-) Amber will always paticipate in cleaning up, which is a good thing. The kids' reward for picking up their mess is they get to use the vacuum. They really love that. Makes them feel 'big'. The second rule is sort of the same as the first. It's just for some reason the kids seem to think it is ok to just toss food all over. I have no clue why. The 2 year old is the worst, but that is to be expected.

3 and 4 go together, too. I have never, ever made anything special for my kids when they won't eat. My grandma didn't do it for me and now I understand why. We just don't have the money to buy extras just in case one won't eat something. The past bit has been a bit hairy because of Amber's sister and her aversion to 'ugly' food. Thankfully that seems to have passed, pretty quickly, too. I am so thankful that Amber does not have any food issues. I remember back when she was a little over a year old and her father filled her full of black olives, salad, and ribs at a buffet. I was wondering what he was thinking, but am so happy now. He is the main reason she will eat and try nearly anything put in front of her.

She also eats like a little pig. Her teachers are always amazed on how we she eats.

Annnnd the rest of them are basics. This post has already gone on forever, I must be tired, rambling. All I meant to write about was something Amber said tonight. Good grief. I guess that will be tomorrow's post. Sheesh, Mama.

University Study, Enter Tonight!

2008-12-06T14:09:00.000-08:00

This came in my email. I am sharing it because who couldn't use $100 gift card?

"University Student Survey
show details 12:18 PM (4 hours ago) Reply

Dear Blogger,

We are graduate students from Brigham Young University working on an exciting research project. Your participation would be appreciated. We invite you to follow the link below and take a few minutes to fill out a short online survey and enter the drawing to win a $100 gift certificate to Target. We would really appreciate you forwarding the survey link to your blogging friends. They will also be entered in to the drawing if they choose to take the survey.

http://qtrial.qualtrics.com/SE?SID=SV_1FIpRT3ZoItpHbC&SVID=Prod

We thank you in advance for your willingness to participate.
IMPORTANT: for the purposes of the survey only responses submitted by December 7, 2008 will take part in the prize drawing.

Regards,

Liliya, Sara, John, and Malinda
BYU Department of Communications"

In Case You Do GFCF

2008-12-05T18:24:00.000-08:00

I am linking to this post of mine.

Low Cost GFCF Diet

The global economy is horrid, so seriously, check uot the tips on Miss Maggie's page. You will be glad you did, plus the whole site has great tips on saving money.

We all need to do that right now, not just us poor people. By the way...speaking of poor...I have a new job that is going to be a big help when combined with the other gigs. I am finally going to overshoot my goal of a per month salary.

You know what that means? PLENTY of green cereal straws for Ambi and her 'green' fetish. Thank goodness she will eat non-green stuff.

Typical? I Don't Think So.

2008-12-05T09:57:00.000-08:00

Amber's neuro-typical sister, who will be 4 this coming tuesday has suddenly decided she does not want to eat 'ugly' food.

What in the world?

Luckily, Amber has no issues like this. BUT, she also copies her younger sister. Great. Just great. What am I to do now? Buy little umbrella toothpick things and edible glitter?

Help. Argh!

LOL!

2008-12-04T19:34:00.000-08:00

I've spent the dad fiddling around and reading blogs of other parents who deal with autism and FXS. So glad I did.

I thought I was the only mom out there who was totally twisted. I laughed, I got teary eyed, and I darn near pee'd myself. It didn't take long for me to realize I've been far, far too reserved.

I haven't related the goofy stuff Amber does. Haven't told you guys about how she and her siblings like to destroy the house from top to bottom or how I was informed that I have pubic hair by the girls when I stepped from the shower. (That was one I could have done without)

It's time to relax. Really, I'm not a straight laced 'Super Mom' who spends all her time reflecting on life. In truth? Amber and her siblings think that zombies are the best thing since sliced cheese/bread/whateveryouwanttoslice. They eat floam and poop smelly, foam filled yuck stuff. They decorate my walls with various materials.

I laugh. I cry. I threaten to not wash their brains before I replace them in their skulls after they have cracked their heads open from jumping off of things. Hubby and I argue then make up. (Why else do we have so many kids?)

Just wanted to clear that up in case you come by and wonder 'wtf happened?' when you see a serious and in depth post about poop. Might be a conversation with the Am-boo.

I Found This Today

2008-12-04T11:15:00.000-08:00

I found this post today and it says everything that I wish I had to people who ask questions about Amber and just don't get it.

Love And Survial With Fragile-X a great post...

Gen-Ed

2008-12-04T08:46:00.001-08:00

Amber has been moved into General Education for reading. Her teacher and I spoke for a few hours a bit over a week ago, discussing her progress. I am very, very happy with the strides she has made this semester, alone. I had asked her teacher if Amber had chances to socialize with other girls her age. It concerns me, because Amber is so friendly and really loves other children. She has become a bit more open and receptive to playing with others, especially pretend/imaginative play.

Her teacher expressed the same concerns and we decided to propose that Amber go to a gen-ed class for herr best subject, reading. Amber is at the top of her class with reading!

Yesterday was her third day in gen-ed. It didn't take a lot of prodding to get her into the class or have her IEP modified. In fact, it was only 3 days from our phone conversation! After the mess the system caused in her kindergarten year, I seriously doubt they're going to screw up again. It also helps when you mention that you're a freelance writer who has written for one of the local mags. Heh.

Amber is LOVING the new class. She is meeting other children, playing, and really blooming with her reading. She sat at dinner on Tuesday night and told me the story they had read that day. I was so proud! She also is drawing faces properly, now. I saw, for the first time last night, 'real' smiley faces.

I have been trying to teach her how to make them for several years. Years. Last night, out of the blue I see her coloring book (new one), covered in happy faced suns, people, and 'witches'. Big round eyes with dots in the middle. Round clown noses. And smiles. Not just a line across a circle...a real curved up mouth where it should be.

It knocked my socks off. I called her dad in to come see her art work. She just smiled and said.."You so proud of me?" Amber is really big on hearing people are proud of her. Her dad and I both said, "Yes!!" at the same time. We told her how much we loved her drawings and how hard she works. That got a lot of squeals, whistles, and grins.

I wish I could understand this disability more in her. Sometimes she is so...typical. Then the next she has fell into a hand flapping, clapping, whistling, squealing mess. Her ped was confused, too. It was kind of funny, once the ped told us that with all of Amber's refusal to fit properly into any real diagnosis, she may even have a new condition named after her.

Not autistic. Not fragile-x (will find out). Not Down Syndrome.

Just Amber. And ya know what? I don't care. She makes me happy.

New Christmas Theme!

2008-11-29T21:46:00.000-08:00

I thought I would spruce up the blogs this Christmas. Amber is so excited about the holidays, so of course her blog is getting a facelift, too. Hope you like it!

Next thing I need to do is go glitter up her picture. Maybe an elf hat or something. I know she'd love that.

I added a new link in Amber's Picks. I recently wrote an article that was accepted and appeared in the premier issue of Unique Magazine, a digital magazine devoted to parents of special needs children. A subscription is $3 per month and a third of the proceeds from the site goes to special needs charities.

I am proud that I was able to be a part of that! I donated a bit of my payment to them, just because I really love contributing somehow, even a tiny bit. We may not have much, but I have noticed it is usually people like my family with not a lot to give that gives the most. My husband is even more into it than I am. I've been with him while he turned around to chase down firefighters collecting money for the Children's Hospital in the streets, lol. I love that guy.

It is rubbing off on ur kids, too. Amber's sister terisa is going to be four in about 2 weeks. She loves taking toys she doesn't play with to the local clinic for kids who "don't have a lot of their own". Just this past tuesday she took her favorite pair of boots that were just a tad too tight. I was proud of my baby, she took them because "some other little girl might have cold feet and I have new boots."

They my all be monsters at times, but man, I love my kids. Special needs or not, Amber has a huge heart. Terisa does, too and so does their little 2 year old brother. Great kids with a lot of love to give.

For those of you in need of a good laugh, one of the kittens just fell in the toilet. HA HA!

Thoughts On The Future

2008-11-28T18:32:00.000-08:00

I try to spend my days with Amber in a mostly positive light. She has her behavior issues, but to be honest about it, she is much better behaved than her little sister who has decided that it is fun to stick her tounge out at me when I tell her to do something. Amber’s meltdowns are not as bad or common as they once were. She does not have wetting accidents in public and she does not run away from her father and I in stores now.

I am worried about her, though. This evening I have been reading through some blogs, one of which has a lot of stories about autistic adults and children being harassed, beaten, restrained, and even neglected to death. I try so hard not to think of these kind of adversities, but I am realizing now that I must, simply must try to put away as much money as possible for her to live on as she grows older.

This is going to be hard considering our income. I did have a new job offer which will help immensely. It still will not be enough to make sure she has everything she needs as an adult. She does receive SSI, which I am very thankful for. It eases some of the strain for today…not for tomorrow. She will get a small raise every so often. By the time she is an adult though, the cost of living will be far higher than now.

I have realized I will need to train her sister and brothers what to do for Amber. It is such a burden to place on your children. I do not want to have to do it. We, all of us, are lucky in the fact that Terisa (our 4 year old) is a natural caregiver. Terisa already senses that Amber is different and always tries to include Amber in what she does. She does revert to teasing at times, but she does that with her brother, too. I never planned to have another child in an effort to supply a built in caregiver for Amber. It is just how the cards fell.

Of course, it is very possible that Amber will be able to take care of herself fully as an adult. She is classified (right now until the genetic testing) as mild to moderate autistic. We are working on all of the life skills she needs now. I do know that she does quite well with her skills at school. She can potty herself easily, clean up after (yuck stuff and her hands), put her clothing in place properly, puts on her coat right, and can work her buttons and zippers. Doesn’t sound like much to a parent of a neuro-typical child, but to a special needs parent, you know how important this is!

I am hoping that her luck with good schooling and teachers will hold. We are lucky to live in Buffalo. Here there are so many programs for children that are special needs, I would not want to be anywhere else, not with all of the stories I have heard. Even back home in North Carolina I would not find better than what we have here. Maybe if her education continues I won’t have to turn to her sister and brothers. I hope to God not. But I also thank the heavens that my children all love each other. May it always continue and just grow stronger.

Fragile X?

2008-11-25T08:57:00.000-08:00

Yesterday I received paperwork I should have gotten two years ago on Amber's evaluations. The eval strongly suggested that she be tested for Fragile X because she exhibits strong signs. She is classified as autistic, but her autism is very mild...but combined with her facial features and friendly nature, plus some other things, they think she is an FXS child.

I do not plan on changing this blog from an Autism to an FXS blog. If anything, it will be both. I am not sure where this road will take us. I don't think I care so much, any real concrete answer on why Amber is so different from your 'typical' autistic child.

My husband and I argue sometimes. His one brother has all the same characteristics as Amber, only far more pronounced. I admit that I resent him a lot when I am angry or when I am feeling very sad at Amber's condition. His mother has a lot of the signs, too. I know it isn't his fault. Heck, it may not come from him, but from me. But it is easier to blame someone when you can see the issues in their family.

Blame is so easy when you are angry.

I should be thankful for him and I am. Many, many women have lost their husbands when their child was diagnosed with a disability. I am so lucky that my husband has been beside me every step of this , fighting for Amber to receive the proper education and healthcare. I am, very much so and I love him more than he can ever know. Even when I'm bitchy.

My faith in God comes and goes. I was raised religious, southern baptist mainly. I'm struggling to come to terms with what I truly believe. It can be so hard to believe in a higher being when you are struck with one obstacle after another. Being poor doesn't help, but I am reckoning that in this economy, we are better off than others who are not. We are used to being poor, so we do not have a lot of things and not a lot to lose. Others are not so lucky...they are losing their homes and more.

Plus, being poor we do not need to fight as hard to get healthcare and testing for Amber. It is kind of a mixed blessing. Crazy, I never thought of it like that before. Just like the Fragile X diagnosis, if it is positive, will be a blessing. A final answer to our questions. At least, to the questions of 'What is wrong?" What is this?'

I've rambled enough, haha. If you like Spongebob, I posted a two pictures for Amber over on my other blog, Not Enough Coffee.

A New Blog

2008-09-15T06:43:00.000-07:00

For all of you who wonder how a parent with one autistic child does it, please take a minute to visit my newest favorite blog, Autism All Around.

A fellow writer is the mother of two autistic girls. I think they're twins, but she can pop me if I am wrong. The latest entry has a picture of what could have been my kitchen a few times! Check it out :-)

A New School Year

2008-09-12T05:38:00.001-07:00

After all of the problems we had with getting into the proper classes last year, we had a very easy time this season. Like other parents we did the normal school shopping, but for us the back to school rush was relaxing compared to the craziness of last year.

Nearly half of the year was wasted waiting for the system to find her placement. Luckily she was placed in a new program the system has in place for autistic children. It is located in a charter school, so we will not deal with the problems that many public schools have. Because she is in that location her siblings will receive preference for their on placement.

This is a good thing, because this school placed number two in quality among all of the county schools. Considering how many schools there are in the city and county, that is huge.

I have been toying with the idea of starting a new forum/blog/website for parents of autistic girls. I will be updating on that shortly, as I think Chasing The Answer will be the flagship of the whole site. Stay tuned!

Low Cost GFCF Diet

2008-07-05T07:14:00.001-07:00

Many people cannot afford to buy the gluten or casein free foods that are sold online or in health food stores. Well, thanks to Miss Maggie, originally of Hillbilly Housewife and now the owner of Frugal Abundance, anyone can afford to eat GFCF.

I have the link to her GFCF pae which includes a shopping list and trial menu. Please, if you've been wanting to try out the diet, but couldn't afford it, visit Frugal Abundance's GFCF Page.

There is also a great recipe for making your own GFCF bread flour!

Thanks, Miss Maggie! You've made this diet withing reach for everyone!

Absence.

2007-12-02T04:56:00.000-08:00

Things around here have been pretty crazy. Amber was to have begun Kindergarten back in August. She went to school, but within two hours, the principal had called to ask her dad and I to come pick her up. Amber had been running all over the school, visiting with everyone.She didn't understand she had to stay in her classroom, which was kind of odd. When she was in her other school, I don't think she did this.

At the CPSE to CSE meeting (committee on preschool education transition to committee on education), the psychologist labeled Amber as Other Health Impaired. He relied on her old evaluation instead of giving her a new one. Thanks to that, my daughter has missed 4 months of school. She is going to be very behind when she does reach her new classes.

I wrote the school board and asked for a re-evaluation. This time, she is labeled, as I always knew, High Functioning Autistic. She will be moved to a special autistic classroom setting, which is so wonderful because someone else will know what to expect from my lil one.

We've been to meeting after meeting on top of our normally packed schedule and I have been lax here. I apologize! Hopefully things will die down here.

Getting Rid Of Dairy

2007-11-15T19:27:00.000-08:00

During Amber's first year of special school she was out for almost an entire month due to what we thought was a stomach virus. I know I had said in my last post that it was last year, but it was actually the year before. Amazing how time flies, this literally seems like yesterday we dealt with the dairy issue.

But, in December of 2005, Amber needed to be picked up from school because of two 'accidents'. She had always had troubles with her tummy, but this was much more severe. I was changing clothing and diapers over six times a day. We were very worried and called her doctor. He had the nurse call us back and asked us to remove milk from her diet for a few days.

Amber improved dramatically. Once the milk was removed it was only a few days until her dirreaha was cleared up. No more late night wake up's from severe gas cramps, either. Amber had been experiencing horrible gas since infancy. No medicines had worked, nothing the doctor could think of, for weeks, then just a simple removal of dairy. But, that's still not the most amazing part.

You see, Amber had not used words. She made noises, mumbled a little, but never used true words, not even with speech therapy for six months before the start of school. At this time she still was not speaking, only using sign language. Amber was over three years old by this time.

The next weeks and months we witnessed a staggering change in Amber's vocabulary and attention span. One day she said a few words, then the next week we heard her string five words together in a true sentence. By the end of the school year Amber was doing so well she ended up being moved into Integrated classrooms in a HeadStart program. She also finally called me 'Mama', something I'd waited three years to hear.

I hadn't heard about the GFCF diet then. All I knew was that her tummy seemed much better, we didn't have BM accidents at night and she was able to go potty like any other child. If you have ever had the stomach flu, you can imagine very well what type of feelings these children go through on a daily basis. The embarrassment is so sad to see on their faces.

Now that I know about caseins in milk, I look back and understand why Amber made such a huge leap in her development. It was as if her little brain was making up for years it had lost, which in a way, I guess it had.

GFCF Diets?

2007-11-14T09:25:00.001-08:00

I've been doing research on the Gluten free, Casein free diet. It seems that more doctors are joining the pro-GFCF army. I call it an army because fighting autism is a serious battle and if you're the parent of a child with autism, you know how much of a war it really is.

Gluten and Casein are, pure and simple, protiens. Protein is an integral part of the human diet, but these two proteins are harder to break down, especially by the individual with autism. These protiens act much like opiates on the autist's system. Many people have described autistic children as having actions like someone who is drugged.

There is enough evidence now to show that these children probably are being drugged by their own diets. You may also notice that your child wants to eat a lot of things with gluten in them. Like, bread, breaded items, and loves milk. If they refuse to eat many other things, it is likely they are addicted to the glucose and casein in these foods. Almost like an opiate addict, hm?

It is easiest to begin your change to this diet by removing all dairy foods. The body rids itself of casein quickly and sometimes results can be seen within days. SOMETIMES. Don't go into this diet with your eyes closed, believing you have found a cure. You may have, but then again, you may not. And this diet needs dedication.

Start by dropping milk. Switch to a flavorful soy or rice milk. Those are the two alternative milks easiest to find in general groceries. We switched to this in our entire family, not only because we felt it was not fair to Amber to be excluded from foods we could eat while she was told 'no' over and over, but because other family members are lactose intolerant.

Move on to other dairy foods, like cheese, yogurt, and creams. Read package labels to make sure no foods you use have any dairy in them. If your child has bowel trouble you should begin to notice an improvement very shortly. We dealt with loose bowels, constipation, and gas quite often with Amber until we removed dairy. Last December we had a month of extreme tummy trouble. Her doctor recommended removing dairy until the trouble had passed. This was before we knew about GFCF diets...but the change was so overwhelming that we removed milk and yogurt completely.

Next post-The changes in Amber thanks to removing dairy. You'll be amazed!

Donate Button

2007-11-12T15:57:00.000-08:00

I've added a button to the bottom of the blog that will allow anyone to donate if they'd like to help with the cost of buying gluten free breads, rolls, flours, and so on for Amber. I plan to take pictures when we order and receive the products. So stay tuned for Amber tearing through boxes of food just for her.

At this time I am going with a 70/30 split of the donation. 70% of all donations will go to an Autism related program, 30% towards Amber and her diet. No donated funds will be used for personal gain. Documentation will be posted each time funds are donated or used for purchases.

I also added a link to a gluten free online store with reasonable prices for gluten free items. Gluten free can be expensive, so take a peek at this store, I promise you'll be impressed with the prices.

Who Is Amber?

2007-11-12T14:39:00.000-08:00

Amber Dawn is one of my four children. She is classified as High Functioning Autistic. Our struggle to find an answer to Amber's specific special needs spans nearly five years, six months shorter than her life.

Up until last Thursday, her father and I have been chasing down a diagnosis. We've been through many different evaluations and still need to complete genetic counseling. Amber's doctor believes there is a possibility of Fragile X, a genetic condition, though Amber does not have some of the 'normal' symptoms.

So, I decided to start this blog, sort of a chronicle of our adventures in autism. Join me as I relate important events in her life. From infancy to the present, diet changes, toys, social interactions...become a part of our family.

Thanksgiving is coming, I'll save you a seat.