What's it really like raising Autism

If you've ever met one person with autism, you've met one person with autism. My life is different from what other parents face. But the situation still stays the same. I'm raising a child with autism. When Doodle was six she had no speech and had been in speech therapy sense she was 2 years old. Yes, she was even in early intervention. Nothing seemed to work. At 6 she wasn't potty trained at all. Poop smearing dominated my life. She was a crafty child and a backwards zip up outfit didn't stop her. What was normal for typical children were tasks that were impossible for her to do.

The first three years of an autism diagnoses are always the hardest because you don't know what to do, where to turn to or how to start some of the therapy that your child needs. Now that Doodle is in school she gets a lot of therapy I no longer have to drag her to. The sound of a screaming child in the back seat, screaming their head off to therapy. Her calming down for therapy and then the screaming all the way home cause she didn't want to leave if she did OT or she wanted more bubbles from speech therapy.

I use a lot of reinforcements to get Doodle to do what she needs to do. At home say for instance I know she will eat food. It's very rare I will see or even hear her have a gag reflex when it comes to food. If she wants dessert she has to eat her food. And yes it takes her forever to eat. She would rather be preoccupied with other things. She's a busy bee so to say. And since Doodle is progressing now positive reinforcement works much better. 

Her routine when she comes home is she has to hand me her school folder so it can be signed. I need her to give me her snack box so I can pack it for the next day. She needs to change out of her school uniform and dress for appropriate weather, putting her shoes in the shoe box where they go and put away her book bag. All before she is even able to get on the iPad. My positive reinforcements used to be small skittles given one at a time for each task completed. But she's outgrown that and can do at least 3 tasks before a reminder of what the next ones are.

Autism is a lot like raising a toddler most days. Some days you know what sets them off and others you don't. It's not all fun and games for me. And I like to think that everything is just a drop in the bucket. I also like to think that her accomplishment bucket is overflowing. Those are what I like to keep in mind the most.

The day before Doodle's birthday we were making a run to Publix for a few supplies. I asked what is tomorrow? She replied with Friday. Birthday. I asked who's birthday is it? And she replied with her name. For the longest time Doodle always had trouble with who and how. Usually, this is a point where I have to hold my finger to my lips and ask the question several times before she could get it. And this time she got it on the first try. I'm proud we have come this far. In all honesty had she not regressed when she was 10 years old she would have been further in progression at this point.

The age of ten for kids is the cut off point. At this point they will either continue with progressing or it stops. It all depends on the teacher. And no matter what amount of work we did at home, because her teacher had her for 8 hours in a day and I had her for 4 before bed time I wasn't able to successfully combat the damage the teacher was doing. When Doodle went on half days, which is a violation of the iep aka against the law. The damage had already been done. I was basically gathering work from the parent teacher store and teaching her on my own. Which is not the funnest thing in the world. With trying to make sure I had everything for my classes I was teaching, learning calligraphy and having to come up with a lesson plan of how I was going to teach my child and what she was going to learn. It was a lot on my plate. Not compared to what I am doing now! But it was still a lot considering it was like I was having to teach my toddler all over again. Grant it she wasn't a toddler, she was 10 years old but that's how far she regressed, to being a toddler. And having to relearn so much all over again. Hand over hand is no fun when your kid fights like Mike Tyson.

So there are good days and there are bad days. I am fiercely private and really am not comfortable with sharing a lot of my life. I'm working on that. Most parents come to this blog for information, but if I'm not sharing the good or bad how honest am I really being? 

I've gone from single students to working on accounts. A magazine that just doesn't seem like much fun as I'm always so tired and I'm getting into some really complicated pieces. I'm worried over will today be the day she freaks out on the bus and hurts another student or smashes her face into the window? Will she scratch her eyes out while on the bus cause the last time she freaked out of the bus, her eyes were the first thing she scratched at.

We all have fears when it comes to autism. And it doesn't help my job as her advocate and protector when in the groups that I'm in I'm seeing parents just giving their kids over to live in group homes or nursing homes all because they can't control them. Add the constant debate that rears it's head every year or so with parents saying they don't want to vaccinate their kids because they don't want a child with autism. That's a lot to depress anyone. Add on winter and the winter blues and that's quiet a lot for one parent to shoulder. 

Doodle is my rock. She's my laughter in the dark. She says some bizarre things which are out of place and seriously funny. Add in her Cindy Brady lisp and sometimes those words are hard to understand. And she likes to change what things are. Currently, she's saying that a lion fish is a porcupine fish. She knows the difference but she wants to change it. There was a time when she was little she called lightening bugs keke bugs. It was so adorable! And I really miss those days, but she's 13 now and they have to be called by their actual name. Sometimes it takes me 30 minutes to get her to say something correctly without dropping the L or the TH sounds. You just have to pick your battles. So there are plenty of days I'm like, cool whatever we've been at this too long already.

For instance last week while waiting on the bus Doodle was watching YouTube video's of fish on my phone. She says look mom, that's a porcupine. I said no that's a Betta and a porcupine. It took me a good minute to realize the fish needed to be called what it really should be called. I corrected myself. That's a Betta and a Lion fish. Dang it Doodle.

I don't know why she wants to change what some things are. Maybe it was because I let so much slide when she had limited to no speech. All I can say is 6 am with little sleep is too early in the morning for my brain to function.

So what is it like raising a child with autism? Some days are tiring. Severely draining. And other days it's a cake walk. She's my child and I wouldn't have her any other way.

See you guys on the flip side.

Call for IEP's and Autism

This post is to make you more aware of your rights and how to get an IEP set up immediately. As a parent who has run this course more ways then you can imagine, you need to be aware that most schools will run the gauntlet with the fact you know nothing. Therefor they will want to accomplish nothing. The less the school has to spend on your child the better they are in their eyes.

But look at it this way. Is your child really getting the help that they deserve? Is your child missing school because of bad behavior and the school wants them at home? That's a violation of FAPE (Free Appropriate Public Education). And think of all the therapy your child is missing, which is also a violation of the IEP and could cost the school a lot more.

If your child is having anger issues at school they need to have a ABA (Applied Behavior Analysis) set in place. This is the program to help them learn to control themselves. Lots of data involved in this but when the next IEP comes around as per the school calling it, they will be able to tell you the new steps they are going to be doing to help your child. This is where a BIP (Behavioral Intervention Plan) comes into play.

Remember the school is banking on the fact that you have no clue as to what you are doing when it comes to an IEP. In most cases you will need an advocate. Like I've said before, I've run this marathon many times! And I have encountered a school that stood firm in not helping my child at all! That is the case where I have contacted my state advocate and made the school aware that I had one. I don't play around when it comes to my child's education. And I don't play with teachers who remove my child out of the classroom. Most times people at the school will ask what is an advocate. My reply is always, that is my lawyer that is provided for me by the State.

Doodle has been moved to half days at school before and I quickly found out that was a violation of FAPE and LRE (Least Resistant Environment). Doodle was denied LRE because they removed her from the classroom for hours at a time which fostered the bad behavior. It taught her that if she acted up in class they would remove her. The school was not even attempting to teach her in the general education setting. And she was missing speech and OT services which is also a violation and that time will have to be made up with the school.

IDEA (Individuals with Disabilities Education Act) is another part of the IEP that is of importance. This part of the IEP gives 13 categories which a student is eligible to receive services and protections by law.

Your child has more rights then you can image but the schools in most cases don't know this. That's why they fight. I like fighting too. It's fun to me. I love seeing the light bulb go off when the school sees that they have broken laws and they can be sued. And they just opened themselves up to that! It's like a Mardi Gras parade to me. Why you may ask? Well, Always remember that an IEP is a corner to corner contract between you, your child, your school and your state. Contracts can not be broken on any end. If it is then someone is in a lot of trouble. And considering that the IEP are rules and guidelines the school has to comply with it boils down to the school breaking the contract. And can be sued!

Each parent or guardian needs to know about every aspect of an IEP. I can't give you every single morsel of what each part goes into depth of but I do want you to research them yourselves for your state. Everything in parenthesis ( ) I implore you to Google. I also want you to Google who your advocate is for your state, and they are FREE. I have mine written down in an organizer and can pull it out at a moments notice during an IEP. Also look up your IEP timeline. In my state the school has to schedule me an IEP within 10 days. Most states I do believe the most days to get you the meeting is 15.

You can call for an IEP meeting at anytime. And you can have an emergency IEP meeting. During an IEP meeting I want you to have your key words written down. IDEA, FAPE, ABA, BIP and LRE. Become familiar with these terms. Know what they are. You can have notes in an IEP meeting. You want the school to tell you all the ways that they are going to be helping your child and the plans they have in place to make sure they are going to help. Write down questions you want answers to. Questions of why they did or didn't do something that would benefit your child and their education. Don't let the school drop the ball.

Once you have your notes, questions and your advocate number, how do you call for an IEP? Well, this one is simple. I can actually help you with this one. You have two ways of getting it to the school. One is by the child, but if they are not allowed to be at school you have to contact the school via email. And always remember that you have to have a copy of the IEP request. I've taken photo's with my phone if I send in a note. If I send it via email, I have the time it was sent and the day sent saved in my email account. So I can go to my send folder and see when it was sent.

Here is the wording for your IEP meeting request. This is the request I use when I want to get someone's attention. At this point in my IEP (career) my letters are now less formal and all the (legal) wording is no longer needed. And remember to change the time frame days if your state requires something that is not 10 days.

To Whom it May Concern,

I am formally contacting you for an IEP meeting request. As per State law, I am required to receive this meeting within 10 days from this notice being sent. I am contacting you regarding Student, (child's full name) at (Full School Name) in (Teacher's name) class in grade (grade level).

I want to meet regarding (issues you are having with school, list in complete detail) as it states I am required to notify you of in the state of (State you live in)'s requirements and guidelines of IEP request.

Thank you for your time.

Sincerely,

(Your Full Name)

If you have sent off this request and have not heard back from the school on the 9th day from when the letter was sent I send off a second request. I will not wait for the 10th day if I haven't heard back from the school. They are already violating my rights and my daughters rights at this point and a point needs to be made. Contact the head of special education for your county or city and get their email address. Your second letter of contact to the school needs to be sent via email to the school and also at the same time to the head of special education.

That letter will read as follows:

To Whom it May Concern,

I am formally contacting you for an IEP meeting request. As per State law, I am required to receive this meeting within 10 days from this notice being sent. I am contacting you regarding Student, (child's full name) at (Full School Name) in (Teacher's name) class in grade (grade level).

Regarding, (list in full detail the issues and concerns that you have).

This is my second attempt to contact you for an IEP meeting. As I have not heard back a date from you as per State law for (10) days notice. As you know this is in violation with State compliance. You have (10) days in which to make this IEP meeting happen and become compliant before I contact my advocate, aka lawyer.

A copy of this letter is also being sent to (List Head of Special Education name), the head of Special Education for the County and state of (List the county of the school and the State you live in).

I look forward to hearing from.

Sincerely,

(Your Full Name)

This is your second attempt at getting an IEP meeting set up. I have had a friend who has a school that likes to make sure that they set up meetings when she can't make it. The second letter provided for you is also to be used if the school wants to meet when you and they know that your child has outside doctors appointments during those times. It's an under handed tactic but yes a school will do that. I have only had to send a second notice once the entire span that my daughter has had an IEP.

If you still can't get the IEP contact your advocate. Send them your emails and make them aware that you are not getting any resolution from the school. They will walk you through the steps of what to do next.

If you are able to have a meeting make sure that you take notes in the meeting and question anything your are wanting clarified. Do not sign the updated IEP if it doesn't have in it what you are requesting the school do and don't leave the meeting. If you do the words out of your mouth should be, I see we are not going to see eye to eye on this and you will be hearing from my lawyer. I have not gotten to this point myself but I will waste a schools time by having an IEP meeting every single week. That's when the head of the special education department has to be present at those meetings because I'm holding so many of them. I have made an example of a teacher before and I have also received a better school environment for my child.

Here in the city that I live in there is a 2 year waiting list to get into the best special needs school. It's the school all special needs parents want their child in. My child wasn't even on the list 6 months when she got accepted in. And I was told at every single weekly meeting they would not accept her in because the school was full. The current school my child was at was tired of me. They couldn't stand a parent who knew what they were doing. I wouldn't comply and just sit back and accept what they wanted me to accept. That's not the type of person that I am. I am made for success! I am so competitive it's not even funny! I am number one in my district at work for the classroom. And I will stay number one when it comes to getting services for my child. Even if it's just to tweak her speech therapy to correct one little word. Special note on the tweaking for one little word, yes I've done it but the school therapist has to be on the same page with me. If I'm working on that word at home you had better believe the school needs to be working on it as well. The reason I do that is because my child has autism. They have to be taught something 1000 times before they get it. I will do 500 and let the school do 500 so that she get's it faster.

You and the school have to be on the same page of everything when it comes to your child. If y'all are not working together it's the child that suffers. I insist on work for the holidays so we can all stay on the same page and my child doesn't miss a beat when it comes to days out of school. 

Don't let any school try to take advantage of you. This is your child's future they are playing with. This is a make or break time. It determines if your child can be a functioning member of society when they get older or not. 

See you guys on the flip side. 

Why I won't battle in the vaccine debate, Autism

There are many people out there that love to do the vaccine debate. Many refuse to vaccinate their children from diseases that have pretty much been eradicated because of vaccines. For me getting into a fight over something like that isn't worth my time as there still is not enough research to prove if it is the cause of autism or not. And here's the reason why I won't debate it.

Autism has been around longer then vaccines. If you read up on fairies you will read stories of changelings. These are stories that were passed down from generation to generation, as that's how stories tend to work back in the day. Parents would put their babies and children to bed at night. Normal, healthy littles with no issues. When the parents woke up in the morning their child was different. The same that some of our children are before they are diagnosed. This is how the phrase changeling came about. People used to think fairies would come into their homes and change out their child for a human baby. When Doodle was a baby she was on track with her milestones. At 5 months old she was able to say momma and dada. I got two good days of her babbling those words and yes I know that's a little early for a baby to speak.

When Doodle was brought home from ICU at about 2 weeks of age my husband was bringing her into his mothers house with Doodle in her car seat. My mother in law looked at Doodle and said, "Hi, Precious!" And I kid you not, I heard it, my husband heard it and my mother in law heard Doodle sigh out Hi. It could just be a fluke with the way she sighed at that moment. Don't know. But I will always say to this day my child is special.

Back to the point at hand. Two good days of Doodle saying momma and dada. And yes, she said momma first! Doodle was trying to stand up as much as she could. She wanted her little legs to work and do things quickly. Well, after the second day she stopped and went back to cooing like a NT baby. She didn't crawl until she was a year old and didn't walk until she was two, believe me I tried everything to get her to crawl and walk. And still we had no speech. She never even got her baby teeth until almost a year old. And she rubbed her hair off the back of her head. For a little girl she matched my Uncle Larry in the bald head department. Looked like a little old man!

So do I believe in changelings? Pretty much as that's the way I experienced life with Doodle. It was an overnight change and she did bizarre things. Crossed her legs, tucked her chin in her chest, pulled on her diaper and went ridged. Happened so many times and no one could figure out why she was doing that. At least 30 times or more a day. Nothing I could do to snap her out of it.

It was later determined that it was possibly seizures. She doesn't do that anymore since the age of 6. And I have no answers to this day as to why or what was the cause.

I'm a researcher. It's not actually what I went to college for. But I need research. I don't do hearsay. I need cold hard facts. Doodle was given a vaccine but it was after she lost her momma and dada speech. So I can't connect those dots. But I have researched fairy stories for years as I am just fascinated by them. Would love to write a fantasy fairy story one day.

Back to task at hand. My husband was cleaning out one of the rooms in his grandmothers house when he read a letter from the water board. They were informing everyone in the area that they were going to be putting fluoride in the water. And they did have a list of possible issues with fluoride being added to the water. One of the possible concerns was that fluoride could cause autism in children. This was found after Doodle was diagnosed at the age of 3.

So could this be a possibility? Possibly. Depends on the environment in which you live in. I don't know the conditions of the water systems or some of the vegetation surrounding where the people who have little children who became as they called changelings. As that would be a possible clue.

Now if you look at cancer it's more common today then it used to be. So why the rise in cancer? If you learn the back story of Peter Pan you will learn about the Davies children, well their mother died of cancer. That was in the 1900's. So why was cancer a thing back then? Did you know that women during this time used powder on their faces and bodies. This goes back many many decades of woman doing this habit. I remember my great grandmother and grandmother using giant powder puffs to put powder on their faces and necks. It's talcum powder they used and it was scented. The same talcum powder we use on babies and the same talcum powder that's used in our makeup.

Now those in the makeup world are familiar with Sister Charles and his recent scandal. If you haven't here's the run down. Customer used his newly released makeup pallet. One of the colors I think it was pink would not come off her eyes, she broke out in hives and her eyes began to swell. She tweeted him over and over and even made YouTube video's complaining about it. During this time Sister Charles tweeted her back and told her she needed to see a dermatologist. Another person in the makeup world broke down the science of talcum powder in makeup and said there was a chance that some makeups have asbestos in them and can cause a reaction. That talcum powder is mined in the same place as asbestos and they look pretty much identical. I'm not saying that Sister Charles has asbestos in his makeup. I don't even have any of his makeup. But during the manufacturing stage there is a possibility that talcum powder can be contaminated with asbestos if just one person in the beginning of mining the powder doesn't know what they are doing.

As you know asbestos causes cancer. When Mrs. Davis became sick with cancer there is a possibility that someone messed up along the line and sold her talcum powder with asbestos in it. Either intentionally or not. So before you start screaming you might want to check some of the products in your home that have talcum in it. Especially, if you use talcum powder on a baby, you know the baby powder you put on your child after they get out of the bath and are dried off.

So there is that run down. But back to Autism and vaccines. I believe it's more environmental. Something has changed because autism diagnoses are exploding now more then they ever have before. So what would be the change? It could be the fluoride that they are putting in the water. It can also be the chlorine the water systems are using in our water now. Here, where we live you can smell it! And if you wash your car off in the mornings it eventually eats the paint off the car! No joke!

Back when Doodle was a bitty I bathed her with Johnson's and Johnson's baby shampoo. They were a company I thought I could trust. They even say it in the commercials. I bathed Doodle with the baby shampoo until she was 6 or 7 years old. Because I wanted the absolute best for her at all times. I stopped when the news broke that the formula for the baby shampoo was the same formula as formaldehyde. If you are unfamiliar with that it's embalming fluid. When you die your blood is removed from your body and replaced with embalming fluid so that the decomposition process slows down. I can tell you for a fact if that gets in our waters and streams and even our grounds that's not good on our environment. And we as parents of itty bitty's are washing that stuff down the drain after a bath. Which either goes to a plant our straight out to our oceans or streams. This is why I make my own soap now. I know what goes into it. I can trust what I put back into the environment. In the back of my mind this is a possibility of why Doodle has autism. But until that research is conducted we don't know the true cause of autism.

Let me give you another breakdown of the chemicals that we use. Doodle used to eat clothing. I would buy her cute little outfits to wear to school and my billy goat would eat her shirts every freaking day! And this was why we couldn't have nice things. About the time of the embalming scare I started making my own laundry detergent. Borax, soda powder, and a bar of soap along with water. Yes, I've gone off the deep end. I'm using a chemical a little girl burned herself with while making slime. Actually, borax in small amounts isn't even harmful. It's a mined rock. I have my hands in this stuff every single week as I've just gone to using only borax to wash our laundry. Fill the washing machine up a ways add the borax and swish it around with my hands. And I made kids slime with borax for a very long time and have had no issues. Anyways, the reason I'm even mentioning this is the moment I no longer used Tide or Gain or any other commercially made laundry detergent Doodle stopped eating her clothing. She hasn't eaten a shirt in a very very long time. So the chemicals that were left as a residue, unseen and unnoticed was like candy to my child.

And speaking of candy, there is a possibility that processed foods we buy at the grocery store could also be a contributing factor in the rise of autism. What all they are giving to the animals or the chemicals that are called harmless but give our foods a longer shelf life. We don't know. There isn't enough research. Just people screaming over one thing but not looking at the whole picture.

And let's get into the tests they preform when you are pregnant. That stuff they had me drink that was nasty and I had to keep coming back for blood to be drawn. I wasn't allowed to eat that day until after the test. I know that put a lot of stress on Doodle when she was in the womb. It's for checking blood sugars they said. Could this be another thing that's causing autism? Don't know.

Everyone has their own opinion. People who have autism are tired of being lumped in with kids who have cancer. Though I kind of see a point with that. Autism and cancer feel like they come out of nowhere. The parents who don't vaccinate don't want a child with autism. I see nothing wrong with a child with autism. They are wonder kids. Love Doodle to death! I wouldn't trade my child for anything. If I got the opportunity to do it all again I would in a heartbeat. I wouldn't change a thing, except for the teacher that regressed her. That I would change! But I prefer to have a child with autism. That's me! I love the work I put in to helping her become a success. When she grows up and looks back on her life I want her to see mom made a difference and she has the best childhood! We are doing things together I never did as a child. Heck if she were a nt child we wouldn't even be hitting up concerts. I do it to push her out of her comfort zone.

Again, I believe it's environmental. I believe that the chemicals in the products that we use, that we take for granted because it's a convenience that we pay for are a contributing factor in what is causing autism. From the water we drink to the products we use on ourselves. And if we truly want to spread autism awareness, we will stand up and demand more research. Not only into the environments where we are raising our children but in the products that we are using in our households.

Most parents who raise children on the spectrum aren't happy that I have a child with autism that on some days doesn't appear like she has autism. Used to have more days like that before the bad school. Now everyone can tell Doodle has autism! Therapy, countless hours working with her and eliminating so much in what she touches or she has contact with has really helped her to focus and become unlocked in her mind. It's time we start helping our kids. It's time we take a stand and find out the cause and looking at all things that could be the contributing factor.

And on that note! I'll see you guys on the flip side.

Back to school, Autism

I can honestly say that I am so excited about Doodle going back to school. I would say that I've been waiting for this the day after school let out, but it really hasn't been that bad this winter break. Sure she's done a lot of stemming and she's been sick and I've been sick. But it hasn't been that bad.

I went back to work on Saturday and Doodle goes back to school today. She's made a lot of progress during the winter break and I am elated!

I overheard her talking to herself and she actually slowed down and pronounced the word feathers. The th sound had always been a problem for Doodle. But she's more cautious now with how she is pronouncing things. And that makes me so happy.

I've spent as much time as I could with Doodle during the break while sick and trying to finish the magazine. The autism life is not always easy and the work involved makes me feel like I'm on teacher duty 24/7. But I'm starting to see progress again and that matters the most to me.

I want my child to succeed. And I'm going above and beyond to get her to that point. I'm still hoping that she wants to be doctor when she grows up. But if she wants to be an artist I will support that too. Whatever her future holds I'm willing to be there and support her to the best of my abilities. I always have and I always will.

If you are a parent and your child has just been diagnosed the most important thing to remember is the first three years are the hardest. All the appointments with doctors and therapists. Trying to figure out what would be the best thing for your child and it feels like you get no rest. Everything is jumbled together and if you can remember to breathe you're doing alright. There are bad doctors out there and there are bad therapists out there. If you feel like you're not being heard as a parent switch your child to someone else. That's the only way that your child has the stepping stones to succeed.

Today when I got up the first thing I sent off to the school was my letter for an IEP. I have the mitts our pediatrician sent to us. Cause those things were not the easiest to find here. And since these are technically our mitts, I want them back at the end of the school year just like I have to get the breathing machine from the school.

Well my day is already filled and I need to get back to work on the magazine and new programs I'm learning.

If you want to read the newest issue of the magazine you can find it here. This month and next month we are tackling a weighted blanket. Check it out. www.jsncreative.com/ezine Remember it's free, no need to use your email to view it and NO ads!

See you on the flip side!