Monday, December 30, 2013

Hands Free Mama Book Review

Hands Free Mama: A Guide to Putting Down the Phone, Burning the To-Do List, and Letting Go of Perfection to Grasp What Really Matters!Hands Free Mama: A Guide to Putting Down the Phone, Burning the To-Do List, and Letting Go of Perfection to Grasp What Really Matters! by Rachel Macy Stafford
My rating: 4 of 5 stars

It was a good look at how being plugged in all the time is harmful. We may think we are connected but really we are missing real life. She has some great suggestions for unplugging. Such as start with just a short period of time. A hour even just ten minutes. Work your way up and think about what is really important. I liked her story of the canceled swim practice and the kids reaction when mom said we have nothing to do. Instead of rushing around trying to fill up time they just went home. They had unscheduled time to just be, if that fun included cleaning the garage for a bit. Not every moment of life needs to be scheduled down to the minute. We all need down time.
Overall it's a easy read and will make you think. Though I kinda laughed that I personally was reading this on my iPad.
Trust me put the phone and iPad down. I did. I left me in the truck for a whole 8 hours. Honestly I didn't miss it. I could actually visit with people and Facebook it went on without me. I know the horror.

I received a digital galley copy from netgalley for review. My copy expired but I will be looking to buy myself a hard copy of this one.

Really right now go buy this book.  http://www.amazon.com/Hands-Free-Mama-Putting-Perfection/dp/0310338131/ref=sr_1_1?s=books&ie=UTF8&qid=1390163310&sr=1-1&keywords=hands+free+mama


Why I Do This!

Wow I have had this blog for almost three years now. Jan 11, 2011 was the first post. It started as an outlet for myself. A way to organize what I was a thinking. Trust me it's organization to me. :) I never expected anyone to read it but you do. Actually quite a few people do. It's amazing an d humbling that anyone would take the time to read what I write. I know I can be all over the place rants and all. Hey I'm pretty sure I have been a asshole at times to. That's part of being human.

As for why I do this. It still is for me. It's a way for me to connect to the outside world. There are a few bloggers ok mainly two that I kind of latched onto when I started the Facebook page.They have   stayed with me for years now and never ran. Sure sometimes they look at me funny like really did you just say that? But overall they are there. To them I am grateful. (Looking at you Homeslice and Captain) there are more now that I call my computer friends but they we're the originals.

I never expected a hundred followers much less the close to 1,500 I have now. Don't get me wrong I'm happy you came, something got your attention, and you stuck around. When it comes down to it though I don't do this for followers. I don't do this for numbers. Even if they dropped to ten tomorrow I would still do this. I'm not in this for popularity. I could care less about being on some best of list. Besides then I might actually have to write for real. That would mean grammar and spelling all that technical stuff.

Anyways her I am three years later and still going. It's interesting to look back and see how I have changed and grown over the years. So I guess here's to more years.

Sunday, December 15, 2013

Why We Get The Flu Shot

Alright, I am going here. My kids get the flu shot every year. They have since they were old enough to start. Yes I know all the claims that the is crap in them, that they don't work, and that it gives you the flu. All these claims are false.

I guess I'm more comfortable because I have inside knowledge about them. I know how they are made, how they are tested and what is in them. No not from doctor google, really that guy knows nothing. You see my oldest kids dad, he is a chemical engineer. Actually he works for a drug company. Guess what they do yep they are one ofthe makers of the flu shot. Their version is preservative free. That means no Thermisol (sorry if I spelled that wrong) in it. They are pretty safe. Sure there are some side effects, some people like myself cannot get them, but overall it's very mild.
If there was any reason not to get it he would be the first to call me and say don't do it.

So today when the kids got theirs I just kind of laughed when I saw the box from his company. Sure we have some sore arms around the house today. Much better than the other option. I have seen the other option and it is scary.

When Roger was a year old he had the flu which turned into pneumonia very quickly. A few years later he was officially dx with asthma. He has always had the flu shot every year since then. In 2009 I believe he contracted H1N1 also known as swine flu. There was no vaccine for it that year and it was really bad. I mean they were ready to hospitalize him. He was really sick for a couple of weeks. Luckily it did not turn into pneumonia that time. That was our last round of the flu.

Based on our experiances and my knowledge of the vaccines yes my kids get them every year. Two kids with asthma they need to have them. Asthma and the flu don't mix. Lucy gets it because not only does it protect her it's one more layer to make sure she does not bring it home to her brothers. I don't get it because I am not allowed to. I have had anaphaltic reactions to latex which makes me not a canadate for it.

Anyways at the end of the day everyone chooses what is best for their situation. This is mine. I have seen both sides and I much prefer the sore arm vrs a very sick child.

Friday, December 6, 2013

When Friends are Just Too Much.

We have entered a new area of friends. What do you do when it's just too much? You are just overloaded and want to take a step back and breathe a bit.

That's where we are. Roger likes his friends, he likes afterschool activities. At last count our days a week he has something. Anime club, Latin club, chess club, drama club, and he's been talking about starting a new club for card (you-gi-oh mainly. Yeah the are lots of other high school kids that play). For the most part he does fine. When it comes to afterschool clubs if he's had a rough day and is at the brink he just comes home. Tells the teacher who is there or another member I won't be there today. No big deal.

His problem comes with friends. There are a couple that live nearby. They can be intense, his one friend is bouncy, loud, excitable, basically your typical teenage boy. They are good kids but even I sometimes have to say ok time for y'all to go to someone else's house. Roger gets this way too.

It's not that he doesn't like them. No he's not mad at them. He is just spent on the social interaction and just wants to go in his room, watch a anime and sort his cards alone. When he was younger he would meltdown and act out. Sometimes this would get him in trouble. I'm sorry but you can't hit people without there being consequences. As he has gotten older he's able to tell when he is getting close to the edge of a meltdown more often than not. He has also learned how to avoid them sometimes. You can't always avoid a meltdown but he does try.

Lately to spare his friends feelings. He doesn't want them to think he's mad he has started saying he's grounded when he just wants to be alone. It gives him a way to turn down his friends offers without hurting their feelings.

We have talked that he could just tell them that sometimes he just doesn't want to go. That's ok. They should understand. For him though it's just eaiser to say I'm grounded sorry cant go, rather than go into all the why nots.

For now this works, later on we will have to come up with something else. I just not think friends will take the I'm grounded line when he's 30.

Please excuse any spelling or typos. This was done on a iPad and autocorrect is just fun.

Tuesday, December 3, 2013

Christmas Gifts

Here is my super short super easy gift guide to buying for autistics. There's only one step so pay attention.

1) Ask Them what they want.

Yep that's it. Just like you would for anyone else. Ask what they like. If they cannot tell you ask those close to them. Ask if they have a wish list. If all else fails gift card. While a gift card may not be the most personal it is much better than insulting someone by buying something years below or years above them.

A while back I wrote a post about gifts in our house. You can read it Here.

Monday, December 2, 2013

It's NOT Your Fault

In the autism community people like to play the blame game. There is a new study every week it seems that something may cause autism. Typically they lean towards the blame the mom story line. I have even seen some moms go as far to write posts about how they caused their child's autism based on these studies. Let's clear something up right away, correlation does not equal causation. I can make a correlation between anything if I really wanted to.

I don't understand this blame game. I myself believe autism is genetic. I don't think it has anything to do with where you lived, what you ate while pregnate, or if you took medications. Really I don't. I personally have done plenty of things of these lists. No I will not link them because I will not be party to the blame game.

I for one will not allow some random person on the Internet make me feel guilty for what I had to do while I was pregnate. I did what needed to be done and in the end both of us came out alive and healthy.

A little back story. Pregnancy and I don't mix. I have always been considered high risk since the fourth month of my first pregnancy. You see I had preeclampsia all three times. The first was really bad. Like bad to the point I was on bed rest for months, had a ultrasound a week as well as mongering two times a week. I was induced a month early with my first because my blood pressures were so high it was dangerous for both of us. The first ended in a emergency c-section (like he was out in under 30 sec) because I became eclampsia and set every alarm off. I really don't remember much of it at all. I do remember being told the next day that 5 more min and Roger would have been gone. 10 more and they would have lost me.

So you look at that situation and yeah umm no your not going to get me to blame myself. I had severe headaches Tylenol, was all I was allowed. It helped some. Had I refused any of the monitoring , the csection, the medications I was given including the pitocin to be induced because of a fear of autism. My child and I would not be here today. We would have died. End of story. There's no correlation in that it is a fact. Without medical intervention including things that have a correlation to autism I would not be here today. So no I will not blame myself or the doctors, I did what needed to be done.

Second pregnancy was pretty uneventful until the end. My frind preeclampsia came to vist at the very end. This time though it was mild. Lucy was two weeks late and needed a little push to get out. So I was induced again. I had a successful vbac.

Third well he was a pain. Kidney infection for nine months. They gave me minor antibiotics to control it. I did go into preterm labor with him which they stopped. Preeclampsia came again so they went ahead and decied with the infection and preeclampsia they tried to induce a week early. He wasn't having it so I went home and came back after a few days. They tried again and it still don't work so we just stayed. Once someone said the dreaded c word he decied well I guess it's time. Seriously my labor was less than a hour with him. Someone should have threatened me with a csection days earlier.

If you really look at my situations I could even make a correlation that if you have a kidney infection no autism. :) sorry bad joke.

You look at my kids today. Two are autistic and the youngest is a hemophelliac. I don't think anything I did or didn't do caused it. I truly believe it was a roll of the genetic dice and here we are today. I wouldn't change a thing. I have seen the other option, I have been close to there and no I would not change a thing and risk not having my children at all.

Wednesday, November 27, 2013

The Good Mother Myth

The Good Mother Myth: Tearing It Down One Story at a TimeThe Good Mother Myth: Tearing It Down One Story at a Time by Avital Norman Nathman
My rating: 3 of 5 stars

The good mother does not exist. Well not the image of the good mother society portrays anyways. This is a group of short stories from real moms who face real issues and make real mistakes. They are the good mothers. Mothers today need to let go of the perfect myth. The stories in this book deal with food allergies, autism, losing custody, and adoption to name a few. This would be the book to buy the expecting mother since it shows real life and real people.

View all my reviews

Wednesday, November 13, 2013

The Email from A$

I received a email from A$ today it said: My response follows.

Email I just received from A$. Have not formulated. Response yet.


November 13, 2013 ACTION ALERT!

Dear

Right now, advocates are gathering in Washington, DC at our AS2DC event. We need your help back home, beyond the Beltway, to make some noise on Capitol Hill tomorrow, Thursday, November 14.

Today, we invite you to tune in to the #AS2DC events webcast here starting at 9 am EST. Hear from national political leaders, meet our Advocacy Team and learn more about our mission from science to adult housing to health insurance coverage.

You won’t want to miss it!

Here is How YOU Can Speak Up!

1) TODAY: SIGN THE PETITION
Have you signed our petition asking President Obama & Congress to develop a national plan to address improved access to healthcare and services, as well as increase research funding? If not, sign here.
Remember to ask your friends to help on Facebook and Twitter!

2) TOMORROW: CALL YOUR SENATORS & REPRESENTATIVE BETWEEN 8:30 AM EST AND NOON! Our advocates will be up on the Hill bright and early so get those phones ringing ahead of them!

Call Your Senators Here: Sen.
Phone:
Sen.
Phone:

And Your U.S. Representative Here:
Rep.

Say something in a polite voice like this:

“Hi! My name is [full name] and I am a constituent of Senator/Congressmember [LAST NAME]. An advocate with Autism Speaks will be stopping by your office today to say hello and bring you a packet of information. We are asking you to be a leader on the Hill for our community and develop a national plan to address autism. Thank you for all you do and have a great day!”

3) SEND A QUICK EMAIL TO FOLLOW UP
Here is a pre-written email that explains our federal agenda to your political leaders. Please consider including a quick paragraph about why this is important to you, then press send. You can send your email here.

We work hard to make advocacy as easy as 1, 2, 3. Working together, we can make a difference! But we need an army of advocates, just like you, to make that happen.

Thanks for all you do to make the world a better place for all of our families living with autism.

Happy dialing and emailing!

Director of Grassroots Advocacy
Autism Speaks


My response: 

Dear 

I'm sorry but I cannot get behind this issue. Well not in the way autism speaks would like. While I agree that we need to have a conversation about autism I do not agree that fear should be used. Mrs. Wrights release prior to the start of this was offensive and belittling to autistic people.

There is no way that we can have a conversation about autism without accepting and including autistic adults at the table. 

Mrs. Wright makes autism out to be evil and a thief. She even went as far to say children are missing. That families are destroyed and parents are weary. The fear mongering has to stop. The fear hurts my child. It hurts his future because the general public fears autism.

Let me tell you about my autism. My children are not lost, they are not missing, autism has not stolen them. They're amazing, creative, thoughtful people. People! My children are people not some evil monster to be feared and avoided.  Then there is myself. I was never stolen, I am not evil. You know what I am. I am a mother, a wife, a nurse and medic (by training). I have gone to college, gotten married, lived alone, and raised children. I guess that is not the story you want to show. You only want to show the bad never the positive. 

Autism is a spectrum and autism speaks should know this yet they only focus on the worst of the worst. All the ads are awful and depressing. They say kids have no future.  You use words such as lost, stolen, and trapped. I know many autistic adults all over the spectrum and you know what they do have a future. They have lives, jobs, children. They are students, teachers, and working professionals. They are a asset to society not a drain. When you call someone a drain on society you are talking about someone's child, parent, spouse, or friend. You are talking about human beings and every human on this earth no matter their strengths or weaknesses has a place and adds to our society.

As for families breaking up studies have shown (Kennedy Kreiger just released one) this is not true. The divorce rate of families with autism is no more than families without. So that statement that I see repeatedly made is false. 

When autistics are openly invited to the table and the tone changes to a more positive one I will be more than happy to help but until then my answer will be no. 

Thank you,



(I removed names and phone numbers from the orginal email for privacy.)


Monday, November 4, 2013

Pitfalls of Writing

Writing is really good for a lot of people. It has a lot of benefits  Such as getting feelings out, sending a message when you cannot talk, documenting purposes, etc.

There are also some pitfalls.  One of the biggest ones is tone. It's hard to get the tone across a lot of times. This is typically where issues come up. Person A writes something and it is like their baby. They are protective of it. Person B makes a comment, sometimes the differing point of view not intending to attack but person A takes it as a attack. The other thing that happens is person c comes along, reads persons a's writing and complelty reads it wrong and feels attacked or put down themselves.  World war three breaks out online because of a simple misunderstanding somewhere.  Next thing you know all three people are accusing each other of attacking.

In most of these cases if the same interactions had happened face to face the issues would not happen. When someone writes something they are subject to their readers moods and interpretation. Sometimes we get it right and it comes across great. Sometimes though things we write just snowball into huge issues that should have never happened.  Readers may not understand the moods and issues going on in the writers life so they may read it wrong.

Someone writing something snarky and sarcastic can be seen as being rude and bitchy even though they were trying to be funny.  Or someone writes something meaning to be really serious and it's taken as a joke.

When you write doesn't matter if it is a blog, email, book, or article; you set yourself up for public comment. People are not all going to see your work how you intended it to be seen. They will not agree with you all the time. Sometimes they just won't like it. That's life. They may comment just out of frustration over things that don't even apply to you or your writting. You just get to be the lucky one they lash out on.  Not all comments will be 100% on your side. You can do one of two things when it is the opposite opinion, start a discussion or go on the attack.

By no means do I think anyone should just sit back and take the abuse. Really there are some really abusive people out there who get off on riling people up. I just mean that sometimes we need to step back and look at what is being said, who is saying it, and maybe ask questions rather than automatically go into defensive mode at attack back.

Now whoever comes up with tone fonts first will be a rich person. Someone get on that I need a sarcasm font.

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.

http://www.kennedykrieger.org/overview/news/80-percent-autism-divorce-rate-debunked-first-its-kind-scientific-study

http://www.psychologytoday.com/blog/autism-in-real-life/201103/do-couples-divorce-because-autism


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

Update

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.

Saturday, September 28, 2013

Autism, Sex, Love, and Marriage

It's no secret I'm on my second marriage. My first lasted all of a year. The reasons it failed are not important. I'm in a better place now. I have currently been married for three years this time though I have known husband or 16 plus years. That is a whole other post in itself.

Let's face it being married is not easy. Having kids is not easy. Though special needs into the mix and well who knows. People like to throw around some stat that 80% of all marriages fail because of autism. Let me be clear there is no evidence that this is true. The studies I have seen say the divorce rate is equal within the autism community as the non autistic community.

Honestly we have been on the brink of divorce. The reason was not the kids, not special needs, it really was not about any outside force. It had to do with us. How we were responding to stressfull situations. We started ignoring the other person. For all intensive purposes we gave up. We got lazy.

I remember being told many years ago that the biggest predictor of divorce is ones sex life. I'm not saying you have to be all up in it everyday hell you can go months without and still have a good marriage. It has more to do with compatibility when it happens. Sex absolutely can make or break a marriage. It's not always the physical act either.

Think about it. When people first get married they are excited to see each other. They can't wait to pay full attention to the other as soon as they can. Over time you get busy. Life just happens and next thing you know you haven't showered in a week. Who knows where the hairbrush is and what time did husband get home again. Oh I didn't even notice you were there. It happens. It doesn't have too though but it will take some effort from both of you.

Don't tell me I'm to busy with the kids, I don't have time. Really you don't have time to send your spouse a simple text. To put the iPad down after the kids have gone to bed and talk to each other.  It's really not that hard. I promise you it's not.

Simple statements can change the mood. Recently my husbands statement to me was. Normally I am this put together on top of everything person that adds everything under control. But sometimes he gets to see the freak. The girl he remembers from long ago.

Simple texts during the day. I love you, I miss you, I want you. They go a long way. They only take a few seconds to send. A lot of times the text between my husband and I are inside jokes we have between each other. We know what they mean but no one else does, it gives that this is just ours. Phones with picture and text capability can be fun. Use them.

Sometimes we just refuse invitations. Not because we have something else or don't want to drag the kids out. Sometimes it's just because it's us. We want to hang out just us. We don't want the distraction of other people. you don't have to say yes to everything. Seriously I told a neighbor once sorry can't hang out with you tonight I'm planning on getting laid and you would just be in the way. She just laughed and walked away.

Take a shower get dressed. That goes for both sides. Trust me as much as you boys don't want to see the girls in yoga pants (btw I don't own a pair) we don't want to see you in your raggedy sweats from 1989. I don't care if you were wearing them when the niners won some football game. They may be Lucky for your football team but they are not lucky for getting laid. Even better take a shower together. Score save water and no yoga pants/sweats allowed.

Sex that happens when it happens. Some time periods more than others but that's ok. We still have that thing. I once had someone tell me oh no if I couldn't have sex at least once a week I'd be gone. There is always better out there. Well if you think there's better than who your with you are with the wrong person.

How you make it happen well that's up to you. I would never suggest putting it on a calendar for us that would never work. It would be too much of a job and not fun. So it's whenever we can make it happen. If scheduling works for you go for it.

Have fun. Seriously don't be so serious and make sex a job. Whatever happens is going to happen. While it is give your full attention to your spouse. The bills, kids, laundry, whatever will all be there when your done. Besides its more fun when your not so damn serious.

I could go into more detail but yeah I will save that for part two.

Friday, September 27, 2013

Emergency Drills and Autism

Depending on where you live will depend on they type of drills your schools will run. fire drills, hurricane drills, tornado drills, and lock down drills. The thing about drills is they can be loud, chaotic and raise ones anxiety.

Time and time again I see parents doing what they think is right. They think they are protecting their child. Really they mean no harm but they are doing a great disservice to their children. Here's what they do they fight and fight to have their child excused from drills. They have them warned of them, they show up themselves during drills, and I have even seen parents go as far as to take the child out of school during a drill.

OK I get it. The anxiety and your day may be shot after a drill. they are stressful. Removing the child from a drill before it happens is just bad. I am a former Sped aide and I was also a medic. I know how important these drills are. Staff needs to be prepared for everything, every situation, and every bad possibility. If the person is removed from every drill the staff cannot be adequately prepared.

The drills are not just to practice and get everyone out. During a drill we can see how each person is going to react. Is someone going to shut down? Will someone run and hide? Is someone going to go into full meltdown mode? During a drill we get to see these things without there being any real threat to safety. There is more to a drill than just getting everyone out or to a certain location. For some we need to plan how we will get them there.  The time to learn that Johnny is going to flip out and run and hide is not during a active fire. If everyone around knows hey Johnny is probably going to run he is the first you look for and get with the the group.

Yes drills are stressful! Yes they are chaotic! Yes anxiety raises! Even with all that drills are a necessary evil. All parents want to protect their kids. At all costs we want them to have the easy way. It's easy to think well if I can make this easier its a good thing. Sometimes what you think is protecting your child may someday put them in harms way. Easy is not always good. We all have to do hard things in life. Emergency drills should be one of them.

Tuesday, September 24, 2013

Alphasmart Can Go to You Know Where!!!

Ahhh the Alphasmart, Neo, or whatever the school wants to call it. Hailed as the answer to your writing prayers. Is handwriting is stressful for you? Do people including yourself have a hard time reading your writing? Organization problems in writing? Here you get this outdated piece of equipment it will fix everything. Yeah sure if your goal is to increase frustration. Have you ever tried to write a entire English paper when you can only see five lines at a time. Try it? It is not easy at all.

Ask your school to not only see one but let you use it.

How about if the teacher is using a worksheet. She has it uploaded on Google docs. You know technology is awesome and teachers can do things like this. OK now get out the Alphasmart and get to the worksheet. Wait what? It's not possible. You can't pull up a worksheet on the Aphasmart? So what do you do? option one use the Alphasmart and type print and attach too worksheet. Sure that is doable. Wait you have technology that you can pull up the worksheet and type right on it and print it out as a whole. Awesome lets use that. Oh wait sorry school says no do it the hard way.

While this technology was great when it came out and probably is still a great tool in elementary school. Alphasmart and high school. Yeah not a good mix. There have been so many new advances and yet the schools stick with archaic devices. Think about it. What if I came into your house and took away your high speed internet and gave you dial up? Or if I took your laptop and gave you one of the first computers. That's what the schools are doing. They are trying to help but they are stuck in the dark ages.

Now in our case I have a solution. It's called a iPad. You can do so much more with the iPad than the Alphasmart. Here let me put them side by side for you.


Type
Access Google Docs
Internet
Print
Portable
See Whole Document
Writing Organization Help
Use at Home and School
AlphaSmart
X
limited

X
X



iPad
X
X
X
X
X
X
X
X

We got a iPad to use as a tool. It is not a toy. We have Inspiration (link here) on our devices. It really helps with visually mapping out a writing project. The Alphasmart not so much. How about seeing the whole paper without having to print it. Ipad yes, Alphasmart nope you have to print and then go back five lines at a time to make corrections. How about getting into Google docs. iPad full access Alphasmart limited. You can save documents but you cannot pull down worksheets etc.  iPad has a calendar on it, even has school planner apps. I do believe the Alphasmart has something on it that can be used as a planner but its a bit more complicated. Bonus when kid walks in the door the iPad automatically syncs with mine. I know what homework needs to be done, what long term assignments are due. No wait I would know but I don't.
Why do I not know because as of yet the school will not allow the iPad in. I have a meeting later this week to get it in the school. Most of the honors teachers have already allowed all students to bring in iPads or laptops to be used in the classroom. They know you cannot write a honors paper on a Alphasmart. Well you could but it will take much longer and cause more frustration than just letting the student use a laptop or iPad. 

I only touched on iPad uses in the classroom for classwork. Lets add into it a child who also needs a communicative device. Yep Ipad does it. So instead of the district buying two devices one for communication and one for writing it can be all in one. I don't know the specs on the communicative devices the schools use because we don't use them. The only time our iPad was used as communicative was in band camp. There were a group of kids from Japan who did not speak English and my kid wanted to talk to them so he downloaded a app that translated. 

Here are the reasons in the past I have been told no:
  1. The school is not set up for newer technology. Ok this was valid but wait during the summer the schools updated all their systems with the purpose of allowing students to bring their own technology if they choose.
  2. The ipad wont be used to access the curriculum so it cannot be used. Yeah see everything above and tell me it does not help access the curriculum.
  3. The iPad costs to much. I'm not asking you to buy one. We already have it.
  4. They have the Alphasmart there. See above again and most schools will not allow the Alphasmart to go between school and home. So great you electronically made a schedule on the Alphasmart yet you can't access it at home.
Those are just a few excuses I have heard. I am pretty sure the meeting this week will go well. I already have the majority of the teachers on board. They already know that yes what I am bringing to the table is better than what they are. Hopefully the team will see it the same way and we get the use of the iPad in place of the Alphasmart added to our current IEP. Maybe if we can slowly get the educators to see the endless possibilities of current technology we can get them to start implementing more and more of them.

(I have not been asked or given any device, apps, or compensation for review purposes. These are my opinions and things I personally own and use)

Thursday, September 19, 2013

Marine Corps Museum as Seen by Lucy and Porkchop

Last weekend we visited the Marine Corps Museum. I gave the two little my phone and let them go. This is what they saw.








































Tuesday, September 17, 2013

Blogger Idol 2013

Alright I told you I was going to do it and I am. Seriously I will probably do this until I am rich and can bribe the judges to get me in the top 12. Anyways heres the deal you guys need to go see Blogger Idols Facebook page and tell them you want me No Guile to be in the top 12. Trust me I really need the help. Have you seen the completion it's tough. Really go check them out too. http://www.pinterest.com/bloggeridol/2013-blogger-idol-auditions/.     I should be up there soon asmI just auditioned.


So go now please.

It Happened Again

Yep that's right it happened again. Someone took their child's life. This time it was two children. Now the are two stories floating around. One pretty much blames a custody battle the other makes no mention of the battle just autism.

What is the response from the community. Pretty much crickets. No one is saying anything. There are no walk in her shoes posts, no sympathy, really not even outrage. It's more of a let's just ignore this one.

Why? Is it because the headline Mom Loses Custody Than Kills Kids makes mom out to be a monster. Which anyone who hurts a child is a monster. It's not as nice as Mom Kills Autistic Kid Than Attempts Suicide. Really those are two headlines form the same story. Same players same situation just the media presenting it differently.

The difference one blames mom and one blames autism. You know what at the end of the day there are two children gone. No matter what the story two children were killed. Yet no one wants to talk about it. They seem to just want to sweep it under the rug.

There are no cries for understanding, no prayers being sent to the families that are broken, no legal funds being set up for moms defense, no calls for more services, just silence.

Just as I hope Alex and Issy's perpetrators are sentenced to the full extent of the law. I hope Jaden and his sister Faith's murderer is sentenced to the full extent of the law. I said it then and I will keep saying it. If you kill your kids you are a bad parent! No sympathy here.


Monday, September 16, 2013

Honors and a IEP

Well as many know my oldest had a dx list a mile long. He is also in the honors high school. Last year when it came time to redo his IEP it was all new to everyone. He has always been mainstreamed the difference this time was he had tested and qualified for honors. You see most people tnk of a IEP only for kids that are falling behind. In our case it keeps him from falling behind.

Years ago when we got the first IEP I had to fight. We had to dance a round a bit because on one hand we had a very frustrated child and on the other we had a C student. C student is good enough for the school. At first they said look he passes tests, he has decent grades that's good enough. We fought back that no it is not. That he is not reaching his potential. That there is a academic affect. Also that waiting for him to fail was not a option.

We had a great teacher that was on our side. When asked in the meeting to forget the tests and look at him vrs other students was he up to par. This is where she said no. She admitted that she had been grading him differently than others because she knew that he knew the information but just couldn't do what was asked. So she found different ways to get it done. With that the IEP was written.

Now fast forward to going into HS. While this is a new backfield for all of us. We are doing our best. We have two high schools involved, which means two sets of caseworkers, 2 different admins of schools. So far three weeks in all is well.

When we had the initial meeting the caseworker was hmm well this is a new one for me. She also said she relized from reading the records that taking away the supports would not be good for him. No one wanted him held back just because it was new territory, so this year will be a bit of trial and error.

Today I would love to go back to that first principal and say hey remember when you said there was no educational impact that C student was fine. Well look at him now. When the schools stepped in stopped fighting everything and helped we now have a A student in honors everything and headed to MIT. (that's where he wants to go right now). Would we be here without the supports. Probably not. We would more than likely have a C student who was not being educationally challanged that was bored.

To all the educators out there I would ask one thing of you. Stop looking at the tests, stop looking at the grades, look at the person. Sure they may be a average student but are they reaching their potentional. Is there something that could be done to help them reach higher. It may be a bit more red tape to get through. More than likely it will be more work for you, but they payoff is worth it.

Wednesday, September 11, 2013

How Do You Explain the Unthinkable

Today is Sep. 11. A day most will never forget but I can't seem to remember. I remember waking up and being in a panic. A panic to find my father who was supposed to be in the pentagon for a meeting that morning. He is one of the stories of meetings canceled, woke up late, took a different way to work that were not where they were supposed to be. If he was this would be a whole different story. After that it was just a blur. Still twelve years later I have not been able to make myself go to the pentagon memorial.

Back then I only had one child. Roger was two years old. The others were not born yet. Yet they hear about it at school. The school has their moment of silence every year. They hear about it from teachers. I heard on our news today the anchors saying schools should not talk about this. That kids should be shielded from all the bad in the world.

I don't agree. No matter what they are going to know. They know something happened. Maybe they do not need to know all the details but knowing about it is not a bad thing. I heard something a few years ago that has stuck with me. A member of the Army said "We need to remember today, but we don't need to remember the hurt and anger. It is better to remember the heroes of the day and all the good surrounding the day. Neighbor helped neighbor and this great country stood as one. That is what we should remember not the anger. If we only look back in anger than the terrorists have won."

So we do talk to our kids. We tell them some bad men did a bad thing. More so we focus on the heros. We focus on the lives lost. We look at them not the bad guy. The terrorist don't deserve a moment in this day. They are nothing. The heros. The normal everyday americans who lost their lives that day. This is their day.

There is no right way to explain the unthinkable. You do what you feel is best.










Monday, September 9, 2013

The Med Students Came

   
       As some of you know I got involved with a program through Uniformed Services University of the Health Sciences. Basically that is a fancy word for med students. In this program they send first year medical students to the homes of special needs families. The point is to get them a real world feel for what it is really like beyond the textbooks.
 
       I got involved when my friend MA. Posted about the program on Facebook. They were asking for military families but I asked hey do you think they would accept a civilian family. MA was like yes you have to do this. Your family would be great.

       She then gave me R's contact info and I sent her a email. I briefly told her in the email that while we are civilian my husband is prior marine and I grew up Navy so we know how the military works. I also briefly outlined the needs in our house. Everything from ASD to a hemophilia. She replied back that we would be greatly needed. (ok I'm starting to get a complex about my family. lol).  R had me call her. I kid you not I spent over a hour on the phone with her. Mostly just BS talk. There was some explanation of the program but hey you know how it goes you get two special needs moms on the phone well we are going to talk. She really is one of the coolest people I have talked to. She might even be MA's long lost twin.

       We got everything settled and figured out we were a good match. I mean really even the dogs in the house are special needs. Before I got off the phone I had two visits set up.

      The first visit was on a Saturday. Two med students came one was Army one was Air Force. First off it was a pretty calm day. The kids just watched TV. They stayed for about an hour and asked questions. Pretty much wanting to know about what makes a good doctor. What am I looking for in a doctor. I told them you have to slow down and listen. That it is not always about you the doctor. Sometimes those conversations out of left field can give you clues about what happened. Someone may not think their fishing trip affected them a week later.

       We also talked about how if a patient had a comfort item no matter how silly it is to them. Unless it affects their care don't remove it. I remember when Roger had his tonsils out he brought his blanket. It was just a little crib blanket and he didn't want to give it up. The doctor said ok fine shove it under him. I can cover it it won't be in my way. Had he taken it it would have been a huge meltdown and just to much on everyone.

      Overall they asked great questions and I think they will do well. The only thing I would point out was they did not address the kids. That gets annoying to have someone talk to about while you are right there but never ask any questions.

       The second visit was the following Wed. Again two students one Army I don't know bout the other. Pretty much the same drill they stayed about 45 min and asked a lot of questions. These poor guys had to walk up to a house with kids and bikes everywhere. The neighbor kids were over this time.

       The second two were interested in the Dx. What they were, what age they were, how we found out? They also asked the kids questions. Which was nice. Since they were there they could get their input as well.
     
        When they asked about what makes a good doctor I told them pretty much the same thing but also added interacting with the kids. Before Lucy was verbal our family doctor talked to her all the time. She may not have answered him but he knew she understood him. That even if you have a non-verbal or semi-verbal patient they can still understand you. Talk to them.

         Overall it was a great experience and I do think all of them will do well. The idea of having med students to go into real life himes is great. They can see another side of medicine. The actual patients. If I was asked to do this again I would. I wish the four medical students I met the best of luck.