Tuesday, October 29, 2013

The Autism Divorce Myth

The doom and gloom corner of the autism world love to hang onto to bad stats. One of the favorite. Autism destroys families. That the divorce rate is high. Most often stated at 80%. Now here's the thing ask them here they got that number from. The response umm I don't know I read it or he's it somewhere.

Truth is its nothing but a myth. Here are a few links you can take a look at and see for yourself.



Just do a google search for more. I did autism and divorce study. So far there has only been one study done on the rates of divorce and it debunked the myth that divorce rates are high.

Wednesday, October 16, 2013

School Orginizations

There are a few things your school district offers that you probably don't even know about. Let me tell you about them.

Many not all districts have a parent education and training center.  This center is run by parents. Most of whom have a special needs child.  They can offer information about IEP prep. (They cannot come with you) They typically have a library that parents can borrow books about just about any disability you can think of.

A few districts have a Special Needs PTA. I believe our state has maybe 3 districts that do. SEPTA is pretty much like the regular PTA except for the activities they put on. While school PTA's are specific for their school. SEPTA serves the whole district. They tend to pair with the parent center to provide different training and events for the districts special needs community. They cover many topics specific to special needs families.

The third organization I am going to talk about ALL districts have. It is a federal mandate that they have Sped Advisory Committee. This committees main purpose is to find and advise the school board of unmet needs in the district. They also deal with parent concerns. The meetings are open to the public. I will tell you many limit the amount of time a non member can speak. The committee is made up of a school board adviser, a district adviser, parents, and other school staff. Only non district employees can be voting members. District employees only serve as advisers and may not out number voting members. Voting members are appointed by the school board. They advise the school board. Ours was integral a few years back in getting paras autism trained. While they did not make it happen they got on board with it and let the school board know yes this was something greatly needed in the district.

To find out about these organizations, what they do in your district, and how to contact: check out your districts website or call and ask. Not all district websites are user friendly. I know ours is multiple clicks to find anything on it. If you have a Parent training center call them and ask them what other organizations serve the special needs population of the district.

Thursday, October 10, 2013

When True Feelings Show

I wrote a post a while back called Ignored. You can read it Here.

There's been some things going on in the past few months that just to me defey logic. I just don't understand people. Really I don't. Since when is it OK to teach your kids hey it's ok that you committed to doing something but hey a better offer came up go ahead and cancel last min they can figure it out themselves.

A few months ago husband and I were envited to a wedding. Husband is in the wedding so we also need to be at the rehersal dinner. Ok months ago before he committed to being in the wedding we worked out the child care situation. Then we RSVPd you know like responsible people.  We didn't want to bail on them last minute you know.

We had planned to stay at someone's house all of us and they would watch the kids during the dinner and wedding. Less driving for us and it would work out for all. Well a week ago that plan fell apart. Husband got the uhhhh that's a busy weekend, dance around but basically backing out. Then we find out because you know Facebook. Someone else was comming into town and you know a better offer so ditch what I had agreed to do. No big deal if I leave them high and dry it doesn't affect me.

Of course that left us scrambling. We came up with a plan but it's not ideal. I will not be going to the rehersal dinner. We just couldn't work that aspect out and really when it comes down to it everyone would prefer I go to the wedding if they have to choose one. Husband will still go to the rehersal dinner as he is the cook.

I mean hey we worked it out no big deal but really we are tired of being second choice. Tired of being the afterthought. If you need someone and call we better jump and get it done now but I better not expect you to come off your high horse and help me. Since you are so much better than I.

At this point we are done. This was the last straw in a long list of things and we just can not do it any longer.

Wednesday, October 9, 2013

The Opposite of Worry

The Opposite of Worry: The Playful Parenting Approach to Childhood Anxieties and FearsThe Opposite of Worry: The Playful Parenting Approach to Childhood Anxieties and Fears by Lawrence J. Cohen
My rating: 4 of 5 stars

I received a digital coy from netgalley.com

"Whether it’s the monster in the closet or the fear that arises from new social situations, school, or sports, anxiety can be especially challenging and maddening for children. And since anxiety has a mind of its own, logic and reassurance often fail, leaving parents increasingly frustrated about how to help. Now Lawrence J. Cohen, Ph.D., the author ofPlayful Parenting, provides a special set of tools to handle childhood anxiety. Offering simple, effective strategies that build connection through fun, play, and empathy, Dr. Cohen helps parents

• start from a place of warmth, compassion, and understanding
• teach children the basics of the body’s “security system”: alert, alarm, assessment, and all clear. 
• promote tolerance of uncertainty and discomfort by finding the balance between outright avoidance and “white-knuckling” through a fear
• find lighthearted ways to release tension in the moment, labeling stressful emotions on a child-friendly scale 
• tackle their own anxieties so they can stay calm when a child is distressed
• bring children out of their anxious thoughts and into their bodies by using relaxation, breathing, writing, drawing, and playful roughhousing

With this insightful resource of easy-to-implement solutions and strategies, you and your child can experience theopposite of worry, anxiety, and fear and embrace connection, trust, and joy." www.netgalley.com

The description that came with the book is pretty accurate. It is a easy read and well organized book. The strategies are more game like which would make them more approachable for a anxious child.

There are some good tips in this one such as to not invalidate your child's fears. By saying oh there is no monster there when to them there is may do more harm than good. It may make them more anxious rather than reducing the anxiety.

There are a few different strategies such as teaching your child their alarm mode. When they feel it coming on they can think and react. Most kids with anxiety are always on high alert. They are always looking for the next scary thing. By teaching them how to look at situations differently in a fun game like way the anxiety can be lessened.

This was of interest to us because Lucy is very anxious herself. Even simple things can be hard for her to do because of fear. One of her biggest triggers are storms. She just sees a storm warning and is on high alert. Even to the point she makes her brothers come inside even if the storm is two counties away. We have tried everything and nothing works so maybe now we can try some of these ideas the next time around and see if it works.

If you have a axious child you might want to give this book a go. It is short simple read and very easy to understand.  A very welcome change to the typical psychological wordiness of many anxiety books.

View all my reviews

Tuesday, October 8, 2013

Happy Birthday Porkchop

Porkchop is 7 today. He got up this morning got dressed for school and came out. When he came out he said I think I'm taller. Not quite kid. Your still short. Now I will give him he is almost waiting for a flood but not yet. Guess that credit I had through fabkids will be used for some pants.

We don't do big birthday parties around here, to tell ya the truth we can't. Luckily he is still little and wants small things that do not cost much. I couldn't find the Pinkie Pie pony he wanted in time but I am sure I will find it somewhere in town. I did find the shark book he has been drooling over since he saw it.

He will have his choice of dinner. This year he picked ham, mac and cheese, broccoli, and cherry chocolate cake. We were a little worried we wouldn't be able to pull it off this year but we did. Somehow we always do.

In the end that is all that matters. He will get a couple things he asked for and his dinner. Grandparents and aunts sent cards and a few gifts as well. We don't need anymore than that.

Porkchop with his army set from Grandma & Grandpa

Friday, October 4, 2013


The start of September I wrote this.

Here's the update:

  1. The courses I was taking I flaked out on. Hey at least they didn't cost me any money. Besides season two of Revenge was calling me.
  2. Revamping the blog: I'm still working on that one
  3. Running. Now that's funny. I may have wanted to but my back had other plans for me.
  4. Writing: I have a outline of a book but that's as far as I have gotten so far.
  5. I'm still on the special ed advisory committee for the district. I am the vice-chair of it.
  6. Find a job: yeah that's brutal. There is nothing. They all say I'm over qualified or not enough experience. Plus the whole only having one vehicle kind of hampers it.
  7. I haven't started either project yet.
  8. The dollhouse. We haven't made it to home depot for material. The whole one car again.

Another post I wrote was this one about the dreaded alphasmart.  Update the iPad was approved. I was all ready to demonstrate why it was better. All the facts and details I had. It came down to one sentence that I said on a whim. I asked the lady writing the IEP addendum to do it on a alphasmart. She said that would be really hard. I just smiled and we wrote the iPad in. When they started by saying this would be the shortest meeting ever I knew we were already going to get it.

So there it is. Short and to the point. I really did not get much done.

Thursday, October 3, 2013

Children's National Hospital

Anytime there is a fundraiser for a Children's hospital the main focus goes to children with cancer. A good majority of the stories focus around cancer. I understand these are the worst of the worst stories. Children's does so much more. They are not just a cancer hospital.

We have been a patient of Children's National Hospital for close to three years now. Our story is not one of cancer. We have multiple dx, including autism, seizures, movement disorder, asthma, and the list goes on.  At no point have we received anything but the best care.

We first entered Children's through the neurology department. There was a possible seizure at school and we needed to find out what was going on. We started with a MRI and EEG. The first MRI we tried was not sedated. Because of movement they couldn't get a clear picture so we had to redo. Oh and they saw some rot of troth in his brain. We would need to use contrast to see what it was. We did the EEG and follow up MRI.

They showed nothing.

We also had a ton of blood-work done. He was tested for everything. The copper test was done so rarely the tech had to look up how to do it. He needed to know what vial to use. Also did a 24 hour urine looking for porpheria.

All Normal

At that point the neurologist could have said ok it's nothing have a nice life but she didn't. She kept digging, kept searching. We have been everywhere in the hospital. Sometimes seizures can be caused by a heart issue so off to cardiology we went. Nope nothing there that would cause a seizure but hey look here a extra vein on the heart that is taking blood to the wrong side of the heart. No  abnormal growth lets just watch it.

Still no answers.

Neurologist noticed some movements that were not normal and seemed uncontrolled so off to another neurologist. This one specialized in movement disorders. Yep there is a movement disorder but nothing that would mimic or caused seizures.

Nothing again.

We were involved in a car accident and saw signs of a concussion clinic. I emailed the neurologist. She emailed back within the hour and said to make a appointment ASAP. She is normally booked for three months out, the nurse got us in the next morning. From there we went to the concussion clinic. Since we were seeing more seizure activity the neurologist also scheduled a 24 hour EEG.

Maybe we will get somewhere now.

24 hr EEG done and of course no episodes in that time period. Concussion clinic determined yes he had a concussion but there was something more. Something that a concussion would not explain. The doctor from the clinic asked if I would like a referral to the autism center for further testing.

OK a few answers but we are still clueless.

Wait listed for the autism center. It has a 18 month wait list. They will go ahead and mail out the paperwork for us so we don't have to do it in the office. We continue with our neurologist. Next on her list audiology and ophthalmologist.

Off we go again.

Audiology does a hearing test results are normal. We had gone to a eye doctor, you know one of those chain places. The said he needed glasses and of course we bought them. Now we were going to a ophthalmologist at Children's.  he was looking for something else. First thing he tells us is this child does not need glasses. Thanks chain place there's a couple hundred I will never see again. As for anything else. Nothing.

More nothing!

Finally we get a call from the autism center. Its much earlier than expected. Only three months can we come in on Monday. Yes we can. The person on the phone let me know that they were able to get insurance to agree to pay for most of it but there was some they would not. I couldn't pay. I was thinking great we finally get here and it is going to come down to money. The response. Don't worry about the money. We will see you on Monday. We can talk about the money later. So we show up on Monday for all day testing. Some we didn't do because the school already did and I brought the results with us. They worked out a payment plan that I could do. Made the follow up appointment for a month later.

Now we wait.

We went to the follow up and I remember standing in the elevator and being asked what do you think he is going to say. I said I don't think I already know he is going to say he is autistic. That's just what he did. The neuropsychologist could have just said hey your kids autistic have a nice day. Nope he answered all questions, gave us information that included a list of service providers. His report was written so completely the school couldn't fight it. We left there with some answers and his phone number to call anytime. He had me call before our IEP meeting and coached me on what to say and how to say it. He really cared and helped us.

Yeah some answers.

We received speech from Children's for a few months and then our therapist transferred to another hospital and we went to the bottom of the list. Only complaint I ever had was being pushed to the bottom of the list through no fault of our own. It worked out though We found a great speech and OT through a outside clinic and we worked with them for a year. Before we became therapy dropouts. (you can read about it here)

Now today we are still seeing our neurologist every six months. We still don't know where the absence seizures are coming from. We have done multiple EEG's and MRI's still nothing.  She says we will get them one day it's just a little tricky sometimes.The cyst is still there but hasn't changed so don't worry. We went to the cardiologist for a follow up last year. The vein is still there we had a cardiac MRI done and it's no big deal. So follow up in five years unless something happens. We just live our lives. We are involved in some studies through Children's.

So when you hear the telethon. When the clerk asks you to donate to miracle network. The runs and walks. Think about it. Because of people who generously donated we are able to get care. We can go to the specialist. We can have the tests run. We can follow the doctors recommendations without ever having to think about the bill. The one thing about Children's is they really do care, they have never turned us away because I couldn't pay. There ultimate goal is for my child to be healthy not their profit margin.