#Autism and Teenage Hormones

I love my son so much.  It’s what gives me the ability to be patient and understanding with him.  Raising a child with autism has many challenges.  I take them on, day to day, and handle them to the best of my ability.  Some are easy to deal with, others are not.  Now that my son is a teenager, some of them seem to be getting harder.

My son has always had a stubborn streak.  In the past, I have been able to manage this.  He was easily redirected to something else.  Now, he isn’t.  He gets his mind set on wanting to do something, or get something, and there is no redirecting him.  We’ve been having a really hard time at night because of this.  He doesn’t want to go to bed when it is time.  He wants to be on the computer, or he wants the computer turned off.  He won’t go to bed if the computer is on, even though we are using it.  My son has always been OCD, but it was always minor.  It didn’t interfere with day to day life.  Now it does.  His OCD has gotten worse.  One example is walking.  In the past, he would walk around a different surface type, and avoid stepping on things.  It wasn’t a big deal, but could be challenging when walking across a parking lot.  Now,  he has to step on everything.  Any little difference in the surface, any object on the ground.  His entire focus is on the ground.  This is dangerous when we are walking in a parking lot.  It’s also lead to him walking into people, or things.

I blame this on teenage hormones.  Becoming a teenager isn’t just a matter of my child getting older.  It means things have changed internally.  Chemical changes.  Every parent of a teenager will tell you that their child completely changed when they became a teenager.  I had hoped that I wouldn’t have to deal with this with my son.  Of course, that was wishful thinking.  The teenage years are officially here, and I feel overwhelmed.  The school has even noticed differences.  I have an IEP meeting scheduled the last week of school.  I am going to talk to them about a behaviour plan.  We haven’t needed one before, but I think it is time now.

We’ll get through this, I know.  It’s just going to take time and patience.  Something I’ve gotten good with.

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#Words+ and @HP Lost My Son’s Communication Device

communication device

Remember the post I did about my son’s communication device being broken at school?  The device was broken at the end of March.  We sent it to Words+ to be fixed.  My husband called them and got the address to send it to, and an estimate on what it will cost to repair it.  He packed it up and shipped it out.  We waited for a phone call that never came.  You would think that they would call us when they received it.  No.  It just sat on a desk.  It was looked at, but that was it.

My husband ended up calling to find out what was going on.  They said only the screen needed to be replaced, and they needed payment before fixing it.  The cost was $350.  We paid it.  It hurt us, but it hurt more to have my son without his communication device.

We were told that we would have it back in a week.  A week went by, and nothing.  We waited a few days after the time that was given to us to expect it in the mail.  Then my husband called.  Words+, in California, mailed it to Texas.  That didn’t make sense to us.  If it had to go to Texas to be fixed, why weren’t we told?

Two weeks later and still nothing.  It’s been over a month since we sent it to be fixed.  We’ve paid for it to be fixed.  My completely nonverbal autistic son has been without his device for over a month.  My husband called yesterday.  Guess what?  It’s somewhere between Words+ and HP.  HP?  When did they get involved?  Words+ is the software.  HP is the hardware.  Since it’s the screen that need to be replaced, that falls on HP.  Only, nobody knows where it is now.  We were told it shipped out from one to the other, but they can’t find the tracking information.  It’s lost.  Now what do I do?

I am so frustrated at the lack of support from Words+.  I’m so angry that my son is still without his communication device.  If I had known that this was going to happen, I would have went with a different company for a communication device.  I should have gone with a device from DynaVox Mayer-Johnson.

Communication Device Broken At School

communication deviceI mentioned it on Twitter when it happened.  My son’s communication device was broken at school.  It’s a Say-It! SAM device.  My son is completely nonverbal, and this was his main way of communicating.  The device, which is expensive, was paid for by his insurance.  The repair for it isn’t covered.  That will be coming out of our pockets.

My husband sent it off last week.  If the only thing that is wrong with it is the screen, the cost of parts will be $267.  I don’t know what the cost for labor will be.  I’ll find out when I get the bill.  I also don’t know how long it will take.  I’m hoping that it will only be a couple of weeks.  A very long couple of weeks.  Try not talking, at all, for two weeks, and then you will understand what my son is going through.

I don’t know how it was broken at school.  No one there knows.  Bottom line, as long as no one there knows anything, the school isn’t liable.  When I first held the broken device in my hands, I felt like my heart had been stabbed.  I went off on my own and had a breakdown.  I didn’t want to do it in front of the kids.  Communication is so difficult for my son, losing his “voice” was painful for me.  It had taken so long to get him that device.

If you are a parent of a non-verbal autistic child, I’m sure you understand how the broken device has been such a hardship for my son.  If you aren’t, just imagine that your child isn’t able to speak, and you will have an idea.

The new statistics for the rate of autism is 1 in 88.  My child isn’t the only child with autism that is nonverbal.  It seems like, as the rate rises, it becomes harder to get help for my son.  Have people become desensitized to autism?  Have they decided that it is something to be accepted, and can’t be changed?  By people, I mean doctors and government officials.  April is Autism Awareness month.  From what I can see, we have plenty of awareness.  People know about autism.  Chances are, you have a child with autism, a family member with autism, or a friend with an autistic child.  Awareness isn’t the problem.  We need action.  We need actual help.  We need to know what causes autism and how to minimize it or cure it.  With the way the rate of autism keeps rising, how long before it becomes a 1:1 rate?

My ABC News Interview

Katie Moisse, Health Reporter with ABCNews.com, interviewed me for an article that was posted today. The article came about because of studies that show that autism moms have a lower income than moms without an autistic child. She wanted to interview actual moms, raising an autistic child, and find out how the studies relate to us.

I think that the only moms of an autistic child that didn’t see their income lowered, or eliminated, due to raising an autistic child, is a celebrity mom. I had to stop working. My family struggles to get by on my husband’s income.

During the interview, I addressed questions about my experiences raising my son. It was difficult. Even after all of these years, talking about the years before my son’s diagnosis rips at my heart. I was talking to a friend about it last week, and I was holding back the tears. I try to not look back. I try to focus on what is, and what could be.

Yesterday, we were out bowling, and there were several birthday parties going on. My son made his way over to one of them, and the mother of the birthday girl was trying to talk to him. I rushed over to him, and apologized. I quickly explained that he doesn’t talk, and that he was autistic. My son was pointing at a little bag of Doritos that was on the table. She told him he could have it, and I thanked her for her kindness.
Later, I looked around and saw that he was back over there. She was handing him a plate. My son came back to us, and sat at the counter. He had two slices of pizza and a bag of chips. I went over to her, and before I could say anything, she looked at me and smiled. She said it was no problem, they had plenty. I thanked her for being so kind to my son. I could feel the tears in my eyes, and I could tell that she noticed them. We exchanged a couple of words, and I returned to my family.

Our lives are not easy. We struggle with taking care of our autistic child. Moments like that, the kindness of a stranger, makes things a little easier.

 

Keeping Busy With The Family

You may have noticed that I didn’t post that often last week.  That’s because I’ve been so busy with my family.  My daughter went on a 3 day school trip to the aquarium today.  Last week, I had to do a lot of errands to get everything she needed for her trip.  Her school also sent home a note about needing a kite.  Finding a kite isn’t easy.  I went to several stores, and finally found one at Walgreens.

My sister came up from Florida for the weekend.  I needed to get all of my laundry done before the weekend.  When you have two kids, you have a lot of laundry.  I also had my AVON deliveries that I had to make, plus my visits to customers for their orders.  This week will be busy, too.  I have several appointments to go to this morning for my AVON business.  Tomorrow, I have   a dentist appointment and an appointment to get my cholesterol checked.  I’m so hoping that it will be lower.  I’ve been eating healthy, exercising, and taking my pills.  Most of the time.  I have to admit that I am bad at remembering to take my cholesterol pill everyday.

My son’s ear seems to be bothering him still.  He just finished up his antibiotic for his ear infection, and I don’t think it completely cleared it up.  I’ll talk to them at the doctor’s office tomorrow about getting him in at his ENT.  He might need tubes, again.  It would be his fourth set.  My son turns 13 tomorrow.  I can hardly believe it.  Raising an autistic child is challenging, but raising a teenage, autistic son is crazy.

I’m making this a short post, because I have to get ready for my meetings.  I’ll have time later to visit my blogging friends, and am looking forward to catching up on everyone’s weekend.

My Autism Son Is Typing Independently

I’m so proud.  My son is typing independently.  For a long time, he would only type using hand-over-hand.  This morning, I watched him on the computer, and he was typing in Shania Twain’s name.  I was so proud.  He did it perfectly.  He’s typing his name at school.  I also think that he is typing other things on the computer.  I’ve seen searches that he is doing on the computer, and they are new searches.  That means he would have typed at least the beginning of what he wanted to pull up on the computer.  Once he does that, then the search box will start pulling up things that match what he is typing.  But, he has to at least start the search by typing the beginning on the search phrase.  I’m such a proud mommy.

I spent the weekend taking care of sick kids.  Both of them were sick.  I had an AVON party scheduled for Saturday.  Luckily, the hostess wanted to do it here at my house.  I was able to keep the kids occupied while I did the party.  I ended the party with some good sales and another party scheduled.  Then, last night, I realized I scheduled the party on a day that I had family plans.  My husband and I did a quick change for our family plans, but I could tell he wasn’t happy.  We were supposed to go the aquarium for my son.  His birthday will fall during the week, and we were going to take him to the aquarium on a Saturday.  Now, we are going to go on a Sunday, and hope that we are back in time for his church class.

I’m a little upset this morning with the computer.  My husband did something to it last night, and there are a lot of thing missing on the computer.  I had to download my Chrome browser.  It was gone.  Now, I have to set my bookmarks, which is a big hassle for me.  I had a lot of sites bookmarked.  I also checked, and the pictures I had on the computer are all gone.  There were a lot, and they were family pictures that I never printed out.  That means they are all gone.  Among the pictures were several years of Christmas pictures, camping trips, family events, birthdays, school events, and more. Like I said, I’m not happy.

I know there is a way to reset the computer back to a previous point, but I don’t know how.  I also don’t know if that will restore my pictures.  My husband has some explaining to do when he gets home tonight.

Free Big Red Safety Box For Wanderers

Is your child a wanderer?  If you have an autistic child, you know what this means.  If you don’t, it means that your child “escapes” or “elopes” a lot.  This is a big deal for parents with an ASD child.  My child is a wanderer, and we’ve had a lot of scary moments because of it.

Autism Speaks, the world’s leading autism science and advocacy organization, today announced that it has awarded $30,000 in funding to the National Autism Association (NAA) to provide 1,000 Big Red Safety Boxes to families of individuals with autism.

The Big Red Safety Box is a valuable tool for caregivers as a means to educate, raise awareness and share simple tools that can assist in preventing, and responding to, wandering-related incidents in the autism community. The Big Red Safety Box contains educational materials, such as a caregiver checklist, a Family Wandering Emergency Plan, a sample IEP letter that can be used to implement prevention and response protocols in school, along with safety products, including two GE Door Alarms, one Who’s Shoe ID, and five laminated adhesive stop sign visual prompts for doors and windows. Big Red Safety Boxes are provided free-of-charge to families with a loved one at risk of wandering. While supplies last, they can be requested at this link:http://www.nationalautismassociation.org/bigredsafetybox.htm.

Supplies are limited.

Boardmaker Pre-Made Activities Now Available

I have used Boardmaker with my son almost 10  years.  I have the versions of Boardmaker, and have taught myself how to make communication boards to use with my son.  My son is completely nonverbal, and they have helped a lot with him.  For those that don’t have the Boardmaker software, you can now print out some helpful, already made, communication boards for your child.  The pricing on the downloads of these range from $2.99 to $24.99.  They also have a free 7 day download so that you can try it out, and make sure that the program is compatible with your computer.

Puzzle Me: Volume 1

Use scanning to solve colorful puzzles!

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Social Support Stories: Volume 1

Learn important social skills with these interactive stories!

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Poetry Pack: Volume 1

Perfect for your little poet!

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Greetings Me to You: Volume 1

Send a card for every and any occasion!

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Number Sense: Volume 1

It’s a countdown to mathematical learning!

LEARN MORE

Storybook Writing Extensions: Animal Friends

Discover the wonders of writing!

LEARN MORE

Just install the CD or complete the download and your activities are ready.
No Boardmaker Authoring Software Needed.

 

 

 

New Definition of Autism Will Do Harm

An expert panel, appointed by the American Psychiatric Association, is working on a new definition for autism.  They are working to narrow the criteria for autism, in order to lower the rate of autism spectrum disorders diagnosis.  They are working towards excluding high functioning autism (PDD-NOS and Asperger’s) from the spectrum.

Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu. – NYTimes

If these proposed changes were to happen, many children and adults will lose their much needed supports.  In my opinion, this would be disastrous. It takes a lot of paperwork, time, and money on the part of parents, to get a diagnosis for their child.  Then, it takes a lot of time and paperwork to get the services needed.

If these proposed changes were to happen, our children could lose their health coverage, therapy, community supports, and even their secure classroom.  Without the diagnosis, children with an IEP based on an autism diagnosis, could lose the protection of an IEP.  They would be completely lost in the public school settings.  It’s hard enough for our children to get their needs met in school, but it would be impossible without an IEP.

I think that the government is scared about the rise in Autism rates.  I believe that they don’t want to spend the time and money to help families with autism, and to find out what causes Autism, so they are using the American Psychiatric Association to lower the Autism rates.  This is horrible!  Changing the definition of autism will not help.  It will cause a lot more harm to the number of children and adults that are currently diagnosed with autism, as well as those that will no longer be diagnosed (but need to in order to receive the services needed to help them) with autism.

Leave the definition of Autism alone.  Instead, find out what causes it and how to help those who are diagnosed with autism.

Autism Child and Technology

I think it is amazing how well my son is doing with his new Colby Android Tablet.  Having a child with autism can be challenging.  He is low functioning, and nonverbal.  Teaching him the most basic task takes a lot of time and patience.  So when he can pick up a piece of modern technology, and learn how to operate it on his own, I get really excited.

It took him two days before he started getting the hang of using his new tablet.  He is now able to pull up anything on YouTube that he wants to watch.  That’s where his interest takes him.  He loves watching music videos, elevator videos, and old television shows.  He has it set up where he can bring up the keyboard on the screen, and select a letter to bring up what he wants to watch.  If he wants Bear In The Big Blue House, he selects B, and the search shows a list of the Bear In The Big Blue House searches.  If he wants Rolly Polly Olly, he selects R.  For Shania Twain, S.  His tablet remembers what he has viewed previously, and that’s what comes up first in his search.

He also takes really good care of his tablet.  He is gentle with it.  He puts it away when he is finished.  The only thing he has trouble with is turning it on.  You have to hold the power button down until it turns on, and he has figured that out.  Yet.  He knows which button is the power button, and will push it, but doesn’t hold it down long enough to turn on.  When he wants to use it, he’ll bring it to us to help him.  Then he is off to use it.  He knows how to connect to the internet with it.  He knows how to go straight to YouTube.  He absolutely loves it.

I’m so happy to see him expanding his interests with it.  When he uses it, I get to see where his interests are at the moment.  I learn what things he likes and doesn’t like.  The best thing is when I hear him giggling.  The sound of his laughter is the best medicine in the world.  If I am feeling depressed, or upset over something, hearing him laugh picks me right up and makes me smile.