The noise noise noise noise

Some days I wonder who has the sensory issues...maybe it's me...because the constant noise drives me crazy. I long for our school days to resume so the house can be quiet for a few hours a day. My kids are non-stop talkers. Be quiet please.

In the car is the worst. Here is the conversation that took place yesterday while I was driving.

I'm on the phone with my sister trying to talk to her over the kids yapping in the background. I must have made a comment to Tammy about something being stupid.

Joshua: Mom...mom....MOM....MOM....I have something to tell you....

Me: I'm on the phone...be quiet.

Joshua: It's really important!

Me: What is so important.

Joshua: You said Stupid.

Me: Sigh, sorry.

Emily: Mom...mom....mom.....

Me: (Still trying to have a conversation with Tammy) Exasperated I loudly say "WHAT!!!"

Emily: Joshua said Stupid...

Me: silence. Back to my conversation with Tammy

Joshua: Mom...mom....Mom......I need to tell you something important...

Me: WHAT?!?!?!??!?!??!?!?!

Joshua: Emily said stupid....

Rinse, Repeat, continue....Gun to my head and pull trigger!

The questions and comments are non stop all day... Mom, Joshua's hurting me....Mom, Emily's being Annoying, Mom Joshua is annoying me....Mom, can I have your phone, Mom can I play video games, mom can I have a snack, mom can I...Can I....Can I.....

Or when they ask something and I say no.... JOshua's new thing he does in the most whiny voice ever...."But whhhhhhhyyyyyyyyyyyyyyyyyyyyyy"

Sigh....


To end a few random funny things my kids asked in the last 24 hours...

On the way to bed last night Emily asks out of the blue: "dad can I have a tv in my room"

Today, Joshua runs to daddy and says "Dad can you build me a computer?"

Daily Mantra: The days are long but the years are quick....the days are long but the years are quick...the days are long but the years are quick....thank god the years are quick (just kidding...I really do love my kids just not the noise).

Summertime

So two 1/2 weeks ago Joshua tracked out and Emily had her last day of preschool. The first week was a breeze with the kids. It didn't hurt that we spent the week in Myrtle beach with my parents. The last week and a half have been hellish. I'm fine with one or the other one at home but put them together for a few weeks all.day.long and it's constant whining, bickering, tattling and crying. (the crying is mostly me ;))

I have went out of my way to keep the kids active and do fun things with them. But I'm ready for Joshua to go back to school next Monday. Sadly, Emily is stuck with me until July 11. I found a summer camp for her from 9-1 Monday through Fridays. She will start in july and go until mid august. Six glorious weeks with mornings all to myself. I am counting down  the days. 

I love my homeschool buddies and I am most definitely surrounded by them. However I can't for the life of me figure out how you spend day in and day out with your kids without blowing your brains out. 

Am I the only parent who looks forward to sending my kids away daily :p. 

Am I really the expert here?

Am I really the expert here regarding my son? I keep reading these posts and blogs and IEP helpful resources that say you are your child's advocate and you are the best expert about your child. God, I hope not. That in itself is a scary thought because if I'm the expert he is really screwed. Yeah, I can point out all of his crazy behaviors, his weaknesses, and his short-comings but I have no idea what to do about them or how to fix them or if we need to fix them or why he does and doesn't do certain things. So please stop looking at me for answers. I really don't have any.

Joshua gets dropped off at school during the before school program ran by the community center. We started doing this to give him a chance to ease into school instead of being dropped off and immediately sent to class to begin morning work. This way he gets to go in and play games and if he's going to meltdown at least it's not in front of all his class mates.

For the most part, Joshua behaves pretty well at school. He listens and follows directions. Right now, I felt that our biggest problem was the stupid potty accidents (see I can't go a single post without mentioning it).

Until the phone call last week.....the lady who is in charge of the before care program calls. They have been really great with Joshua. However, it turns out Joshua has been having a few issues. Here is how the conversation went.

Lady: Joshua has been withdrawing from the group play and going over to sit by himself and not particating.

Me: He has autism.

Lady: he's been trying to run out the door into the hallway.

Me: He has autism.

Lady: When it's time to line up to go to class he runs around the cafeteria like it's a game and doesn't listen.

Me: He has autism.


Look, I'm not using autism as an excuse here. I get it these are new behaviors that you are seeing during your time with him. I know he has not done these things in the past and other than melting down during drop off he's always been pretty good about participating and listening. But these are the behaviors we see at home. My guess is he is starting to feel really comfortable and acting out. I have no answers for you. I haven't figured out how to deal with these issues at home so I don't know what to tell you. sorry.

Joshua's annual IEP meeting is next week. I know I'm supposed to get prepared. I have his current progress reports and his current goals. I have no idea what to expect for first grade or what services I should be fighting for. I have a feeling most of our IEP meeting will be about his potty accidents. And they will be looking to me for answers and all I will be able to say is...

He has Autism.

So to end, I am pleading can someone else please take over the role as expert because I clearly suck at it.

I would like to thank the academy....

My friend Jen who has an AWESOME blog gave me my first blog award. :) I would like to thank the academy of bloggers for this prestigious award. :) Of course, I would like to thank my son for the inspiration for my.....wait....what? Oh, it's a blog award but there's no trophy or money? Oh...nevermind. On to the rules....

1. Thank the person who awarded you and link back to them in your post.
2. Tell 7 Random facts about yourself.
3. Pass the award on to 15 new found bloggers.
4. Contact each blogger you want to pass the award on to and let them know you’ve done so,

Thanks Jen you rock. :) I do feel very special now. You do inspire me to keep a blog and although I try to be witty, your blog is so much funnier.

1. I met my DH online back in 1996. We are still married, not going strong but going ;).

2. I am in love with Matthew Macougnahay (sp?) I'm too lazy to look up the correct spelling. I should learn it if we are going to get married one day.

3. I have lost 50# since June 2010.

4. I love to scrapbook and I'm pretty good at it if I do say so myself.

5. I love to travel and start planning my trips in January. We are going to Myrtle beach, Maine, Indiana (twice) and the western Caribbean. (again the spelling)

6. I'm addicted to the internet (duh!)

7. Most people like me? right?

15 bloggers? really? really? Hmmmm......

I guess it doesn't count to throw it back at Jen ;).

Lola, she makes the best jewelry and deserves an award. http://autismlovehope.blogspot.com/

I'm a rebel. I break the rules. I only got one. :)

Okay that's it for now. I'll be back later to brag about my son's first tooth that fell out. Yay. :)

Okay enough with the potty mouth

I know the last thing you want to hear about is more potty issues. But hey this is my life right now. Joshua needs to stop having accidents for my own insanity. I can deal with the meltdowns, the biting, the refusing to eat dinner or any resemblance of a healthy meal.

No Joshua, gummy bears are not a power food.

BUT I can NOT deal with potty issues. I hate potty training. I've been working with his resource teacher, OT, and teacher at school we are trying to combat the potty issues. They have created a log sheat so I have detailed information when he does have an accident other than just a bag of clothes sent home. They also have a schedule of when he is going to be told to go to the restroom. Great. However, he has refused to go when they tell him to and can not force him to the restroom. The other day they were telling him he needed to go try to use the potty and he sat in his chair refusing and then he wet his pants. *BANGING HEAD AGAINST WAll*

At home he has accidents. I kind of threw my hands up in the air last night after yet another accident. I told Joshua "I don't know what to do, I don't know why you are having accidents, what can I do to help you stop having accidents"

These were more rhetorical questions, not expecting an answer but yet he gives me one.

Let me stop going to school and I won't have accidents. At that point I just had to walk away.

A few minutes later I went back to the bathroom. He was taking a bath and I sat down to talk to him. I explained how the bladder works and how you get that sensation when you have to go and does he get that and he was like yeah. Then I asked him why don't you go to the bathroom. He says I don't want to stop or I'm focused on something. (paraphrased)

I then ask well doesn't it feel uncomfortable to sit in wet pants?

His answer was no. I reworded the question 100 different ways to make sure he understood what uncomfortable meant and well he does. He says he likes sitting in wet pants and it is comfortable.

All I can say now is HELP. I don't know how to work with this. Does anyone out there understand? Any Advice? Any light at the end of the tunnel?

My heart --- insert knife

Joshua has been having potty accidents a lot lately at school. I am so frustrated, matt is so frustrated, everyone is frustrated (except Joshua I assume). During school, if he has a good day behavior wise he has a green day. He usually has a green day. But every morning I hug and kiss him goodbye and say okay, let's work really hard and not have any potty accidents today and let's make sure to have a green day. When he has good days and is successful he jumps in the car and announces, "Mommy, I had a green day and no potty accidents" My response has always been, "Joshua great job, I'm so proud of you".

On day he doesn't achieve one or the other he doesn't say anything. I usually question his day and asked him why he didn't get a green day or why he had a potty accident. I know these questions can be futile especially with kids on the spectrum. The answers are always I don't know. And he certainly may not. I as his mom don't understand so why should he.

Anyways, back to today. This morning he was so excited because ANGRY BIRDS RIO came out. This boy loves his "wacky birds" as he calls them. It's his favorite app. And he's better at it than me. So I promised him that if he had a green day and no potty accidents then we would buy RIO tonight when he got home.

Sadly, he got in the car and did not have a green day and had a potty accident. Sigh. I asked him what happened, etc. He said I don't know. I didn't really know what to say.

Then out of the blue he said, "mommy, are you still proud of me.." in the absolute most pathetic little voice I ever heard.

I swear I almost burst into tears. I assured him that I love him and am always proud of him. I gave him big hugs. Then I was looking through his communication folder and saw that he passed his weekly sight word test. 100% so he gets to move onto the next set of words. This is our goal every week. So I immediately high-five him and congratulate him. He immediately says, "since I knew all my words and get to move up, can I please have Angry Birds Rio"

What is a mom, who just had her heart ripped out, supposed to say to that.


I gotta go now, Joshua wants to show me something cool on his new angry birds app.

The Best Kept Secret

So apparently, federal law mandates that parent counseling/training be written in the IEP if so requested. Here is the article that addresses the issue. Our IEP meeting is coming up and this is something that would really benefit our family. However, I can't find the language in the actual IDEA to confirm this article? Anybody else have any knowledge? Has anyone ever asked for this? How did you proceed. Now that you know about it will you be looking into it? I would love to hear your thoughts.

The Best Kept Secret
School Districts are Obligated Under Federal Law to Offer Parent Counseling and Training

By Tracey Spencer Walsh, Esq.
Senior Counsel
Mayerson and Associates

When you have a child with autism, there are so many things to “stress about” but parents should not have to do it all alone. School districts are obligated under federal law to offer, as a related service on the Individualized Education Plan (IEP), parent counseling and training. It is the best kept secret.

It is perhaps the most overlooked legal right parents with an ASD child have. Many school districts around the country ignore this provision, and some, like the New York City Department of Education, claim it is embedded in its District 75 (Special Education) program and therefore routinely fails to put parent counseling and training on the children’s IEPs.

Imagine that you are at your child Josh’s IEP meeting either for the first time or the “umpteenth” time. Your child’s teacher paints a picture that, no matter what she tries, she can’t get Josh’s behaviors under control – she’s “at a loss.” You think to yourself, “Me too!” The Committee on Special Education (CSE) chairperson sighs and says, “That’s very typical with autism,” and moves on to discuss the class size your child should be in next year. Wait. Stop. Typical of autism? Hmm … you were told by Josh’s pediatrician that autism is a spectrum disorder and that Josh will present with unique needs and, while there are commonalities among ASD children, there is nothing typical about autism; behaviors vary from child to child and there can be a multitude of reasons for the behaviors. But you are not sure and you are in a room filled with educators – don’t they know best? You think so, but that is not how you feel. You are not even sure what questions you should ask, but you try and blurt out, “Are Josh’s behaviors normal?” The teacher is about to answer, but the CSE chairperson cuts her off and answers you with a curt, “Yes, it’s normal for children with autism,” and continues with the conversation about class size. You are just not sure. During the meeting, the team decides on the related services Josh will get: speech and language therapy and occupational therapy. It occurs to you more strongly than ever that you really need help with managing these “normal behaviors” and you ask, “Is there any help I can get to help Josh with his behaviors?” The CSE chair gives you a sympathetic smile and tells you that she is sure there are parent groups you can join, but offers you nothing beyond that. You think to yourself, “I need help supporting Josh’s needs at home – I don’t know how they teach him skills at school.”

Know Your Federal Rights

Your instinct is right, and Congress has recognized that parents do need help in the form of parent counseling and training. The federal regulations define parent counseling and training as:
(i) … assisting parents in understanding the special needs of their child;
(ii) providing parents with information about child development; and
(iii) helping parents to acquire the necessary skills that will allow them to support the implementation of their child’s IEP or Individualized Family Service Plan (IFSP) (34 C.F.R. 300.34(c)(8)).

Parent counseling and training is mandated as a related service to be offered as part of your child’s IEP.

The Official Comments to the Federal Regulations under the Individuals with Disabilities Education Act (IDEA) help us to understand what is meant by parent counseling and training (Under the Related Services heading in the Official Comments published March 12, 1999 in the Federal Register (Vol. 64, No. 48, at page 12423, et seq.), Parent Counseling and Training is included and defined).

The federal law makes it clear that parents are entitled to counseling and training in how they can help implement their child’s IEP goals and objectives.

Parents can and should ask that parent counseling and training be listed as a related service on their child’s IEP. The frequency and duration of the parent counseling and training depends on what your child’s needs are. A student with autism with many severe behaviors should have intensive parent counseling - a half hour once a month is not enough. Parents should present an expert report at the IEP meeting or have an expert participate at the meeting who can recommend the level of parent counseling and training that is appropriate for the disability you are supporting at home.

Parent counseling and training, as obligated under federal law, should not be the best kept secret and, hopefully now, the cat is out of the bag.

Tracey Spencer Walsh, JD (Fordham University School of Law, ’94) is the Senior Counsel at Mayerson & Associates, a New York law firm dedicated to representing children and adolescents on the autism spectrum, and assisting families in accessing the education and related services necessary and appropriate for students. For six years, Ms. Walsh worked as an educator and served as an Upper School Dean of Students at an independent school in Rye, New York.