Thursday, August 7, 2014

A Little Reading

Want to know some of my secrets?  Read this:  http://www.huffingtonpost.com/suzanne-perryman-/6-secrets-special-needs-moms-know-but-wont-tell-you_b_3081692.html

#1 is so incredibly true!  If people only knew......

Sunday, May 18, 2014

God Will Not Give Us More Than We Can Handle

All my life I have been told the phrase, "God will not give us more than we can handle or withstand" and I know that in my head that is true.  However, honestly my heart and my emotions sometimes are not in agreement and cry out in protest that "this is too much" and wondering how I can go on.  This past couple of weeks have been filled with such moments and I have had to do a lot of self-reflecting and prayer to get me through the days/weeks.

There are some days I am so fed up with Aspie quirks and nuances that I could honestly scream and just want to grab the girls, get in my car, and run away.  Not to mention the emotional disconnect that I feel when my husband and son are deep within their Aspie world and the needs or wants of others are forgotten.  Let me share a little glimpse . . . . .

This past Mother's Day was a total and complete flop as has now become the tradition in our household.  Not only did my husband, the day before, get me a present that I did not want/need and just creates more work for me, but then told me that he forgot about dinner and proceeded to do nothing about it except want me to give him every, blasted detail on how to make something and me go shopping for all the ingredients that day as well.  All I had asked for was that on that day (just one blessed day a year) that I would not have to cook or clean.  In other words, I just wanted one day off.  However, that is exactly what I got to do all day long, but by George, he got time to play/program his stupid video game and stare at his phone "looking up stuff."  To say I was disappointed and irritated, is truly an understatement.  I fantasized of taking both his laptop and his cell phone, placing them on the driveway and gleefully running them over repeatedly with my car as he watched in horror as his "stress relievers" and for me, the symbol of our emotional disconnect was ruined, demolished, never able to be repaired.

I was hurt and frankly, TICKED OFF! It hurt that I was given so little thought and planning on the day that was supposed to symbolize his appreciation for caring for our children/household and I didn't feel that I had asked for something outrageous.  It also didn't help that his birthday was four days later and I had planned out presents, dinner, etc. for weeks.  I just wanted some of the same consideration. 

So that evening, I blew.  I told him that I should treat him and give him the same consideration for Father's Day that he has given me consistently for Mother's Day, Valentine's Day, our anniversary, my birthday, and Christmas just so he can see how it feels and experience it and then maybe he would know how hurtful it was.  And in true Aspie form, he was shocked and didn't understand my frustration.  Needless to say, the "discussion" ended up with me going for a very long and cold walk with me venting, praying, crying, and thinking.  The conclusion I came to that my expectations are obviously too high and that my "dream" of being romanticized or "whisked off my feet" with unexpected surprises is just not going to happen. Aspie's just can't do it.  They are too literal and too emotionally distant.  So I decided to let that dream go, and basically let my husband off the hook.  When I got home I told him to please do not buy any more gifts or "plan" meals/desserts, etc. on these occasions.  Instead, I just need him to be okay with spending money on things I wanted and would make an effort to either buy them on that "special" day or not use them until that day.  That way I am not disappointed and he is not frustrated with me being disappointed. 

You need to understand that Aspie's are such black and white thinkers that hints or suggestions do not work with them.  They need it detailed out to the point of saying, "I want ____ and you can buy it at ____ and it costs this much money."  My feeling is that if I have to be that detailed for a "present", it is honestly easier for me to just buy it myself.  Plus I am such a bargain shopper, that I will buy it when I find a deal where as he waits until the day before or day of and pays full price.  Makes me crazy!

Not to mention that amongst all this disconnect with my husband, our son's sleeping has been, in a word, AWEFUL!  So he has been rude, mouthy, mean, and stimming like a crazy person because he is so tired he can't think straight.  Which also means when my husband get home and is tired himself, the two of them go at each other and both are stimming and screaming at each other, while the girls and I try to maintain some type of normalcy and function in this craziness.  Needless to say, I'm tapped and have had a lot of loooooong days and nights.  As usual, it will eventually get better for a little while and then we will start again with new quirks and issues and begin the crazy cycle all over again.   . . . . . And so is our life in our aspie world.

Wednesday, May 7, 2014

Short Post, But Happy One

This post will be short and sweet since we have a doctor's appointment early this morning for a med check and it is a half hour drive.  However, just wanted to say that we got notice that someone with some common sense reviewed our son's case and our insurance has decided to approve coverage for his medication.  YEAH!!!  But the insurance company and I, we still aren't friends.  ;)

Sunday, May 4, 2014

A Tough Aspie Week

While the beginning of the week went fairly smoothly, we sure did end it on a bang!  Both of my Aspies got sick, and I mean really nasty stomach bug sick.  Also the NT girls did as well.  Amazingly, I so far seem to have escaped it all which I have no idea how considering the amount of vomit I have been exposed to and cleaning up.  Consequently, that means that for the Aspie's everything is off.  Their schedules, their bodies, EVERYTHING and that means the rest of us pay for it in various ways.

With my husband, that means he is just plain grouchy and not very fun to be around.  He also walks around with what I like to call "an old man shuffle" with his head hung down and his shoulders hunched.  He also has "checked out" a lot with the family, which means I'm pretty much left on my own to keep the house running.

With our son when this type of thing happens, he stims like you would not believe and his sleeping is A.W.F.U.L!!!!!!  For example, today he was up at 6:45 am, took only a 1 hour nap, and as I am typing this (at 10:30 at night) he is still in his room wide awake counting who knows what.  And yes, we did give him Melatonin, put lavender oil on him and his pillow, did our nightly routine, and my husband sat in with him for over a half hour reading to him.  I even took him for a run, hoping that would help him relieve some of his anxiety.  (He even said near the end of it that he was totally worn out.)  It is going to be a long night and tomorrow morning is going to stink if he does not sleep in meaning past 7:30 am, which happens MAYBE once every three months.  Sleep is so vital for him to function.

So that is my life in a nutshell right now.  Honestly, I am ready for a spa day.

Monday, April 28, 2014

Progress . . . . No Matter How Small!

This weekend was our eldest girl's birthday.  She turned two, so we tried to make it as fun for her as possible.  It was rainy and cold so going to the local zoo was out.  Instead we took the family to a local pizza/play area place. 

I have to admit I was nervous taking our son there.  These kind of places tend to overstimulate him quickly and then we have stimming and meltdowns to the max, which result in us usually dragging him out of the vicinity and trying not to die a thousand deaths as he is screaming, hitting, and kicking all the way to the car.  However, this time he remained calm!  There were kids in the play area who were yelling and being rough, and he remained calm and played well with the other kids.  He fussed a little when we made him stop to eat lunch and later when we told him it was time to go, but nothing more than a NT kid his age would do.  No screaming. No hitting. Nada!  It. was. AWESOME! 

Of course, when we got home he was starting to stim and was clearly overstimulated so we were unable to get him to take a nap and then that night we had my sister and two of her kids over so once again he was on stimulus overboard and getting him to sleep for the night was really tough!  However, his behavior in public was amazing and this was progress!

Then on Saturday he wanted to go shopping with me.  We went to Target and then Wal-Mart.  Again he did wonderful.  Didn't touch anything he wasn't supposed to.  He didn't meltdown when I didn't buy something he wanted.  He didn't insist on pushing buttons when we checked out.  However, we then went grocery shopping and that is when the meltdowns started.  One was over not being able to pick out a watermelon himself.  The other for not being to push "the red button" on the peanut butter machine.  The third was for not letting him open the cooler and get the milk himself.  (I opened the cooler for him so he could get the milk since I knew he couldn't do both.)  While that was frustrating, the fact that he did well at the first two stores, especially at Wal-Mart since we were there the longest, was GREAT!

The one thing I have learned about him is that independence for him is extremely important.  He hates being told he can't do something due to his age or size.  I have to reluctantly admit that he gets that honestly by me.  I was and still am the same way, especially if someone tells me I can't because I am female.  Nothing will make me even more determined to do it.  It's just something that I need to remember and find the balancing act of when to let him try and to keep him safe and also to help him understand when limitations are necessary.  It's a learning process.

I just wish the stupid insurance could see or understand the changes that are occurring since I attribute part of it to the medication that he is currently on and that they are questioning the necessity.  Hopefully, wiser minds will prevail and someone with some sense will approve it so we can all move forward.  We should have a decision by today either way.  Fingers crossed!

Thursday, April 24, 2014

My Happy/Sad Moment

Today in one of the Sensory Processing Disorder (SPD) support sites for parents with kids who have SPD, a fellow member mentioned a national crediting agency for behavioral specialists.  I laughed to myself and thought I would do a search to see if there was anyone listed in my area.  I just knew there could be no way there would be anyone local, but was curious to know if there was even anyone in my state that was credentialed.  To my shock, there was someone local listed! To say I was elated, would be an understatement!  FINALLY I had found someone that might be able to take some of the burden off of me and help me with my son.

First, I looked her up with our insurance and of course she was not listed as a provider, (Have I mentioned how much I dislike our insurance?) but I didn't care. I still wanted to find out where this person worked to at least know the option might be there.  That's when the sad moment comes in.

When I looked her up, I sadly saw that she works for a drug and alcohol rehab facility.  I wanted to cry.  That little glimmer of hope of some small reprieve was dashed.  Sigh!

Oh well.  We are no worse off than before.  Just one more reason to tuck away the thought of going back into the field and opening up some type of practice to help mothers like me.  Or at least that is what the crazy side of me is thinking, while the practical side is truly questioning my sanity of even entertaining the idea when I can barely keep my head above water now.   Guess time will tell as to which side wins.

The Game of Numbers

This week has been a bit stressful.  We went to refill a prescription for my son only to find out the insurance had denied coverage for it and wanted more information from the prescribing doctor.  After further digging, MANY phone calls, and emails, we found out that our "wonderful" insurance has decided that my son's condition warrants a "step" program for medication, that we did not know about until now I might add.

What's a "step" program?  It means that the powers that be have decided that they only want to spend as little money as possible so that require you to try a medication that has a generic first.  If that doesn't work, then you can move up to a Step Two medication, which is a little more expensive but doesn't make their tightwad accounting books scream in agony.  If that medication is deemed as not working, then you will be blessed by the insurance gods to be allowed to be prescribed a Step Three medication, which is what my son is taking.

Here's the kicker:  The paid for the initial filling of this medication but "only as a courtesy" they wrote in their letter.  And then waited until we tried to refill it to deny it and start the prior authorization process, which meant that either my son went without meds, we started over with a new medication, or we paid for it ourselves at the tune of $222.98 per month.  Now remember this little guy is only 4 and we have been trying for over 6 months to find a medication that would work for him and FINALLY found one that not only helps him but that he willingly takes and says that it helps him.  Plus it is a liquid, which helps in my little guy in taking it.

So now here we are sitting and waiting for somebody who is not a doctor and who has never seen or met my son make a decision as to what type of medication "is best" or in other words what type of medication will cost them the least and forget what works or what is best practice for this child.  Never mind the fact that they are suggesting making a guinea pig out of my son and force his body to go through changes on medications and all that goes with that.  Have I mentioned I HATE our insurance company?

Oh, yeah, and they would not send the paperwork to the prescribing doctor (who refused to call the insurance company to request the paperwork) to fill out for them to "make their decision" until my husband sent a not nice email to his HR department telling them how bad the insurance company sucks and how uncustomer friendly they are.  And my husband did that after I called him in tears because when I called the insurance company to ask them to send the paperwork was told that I was not allowed to do so even though it is my son that is affected.  They said only the prescribing doctor could request the paperwork be sent, which the doctor refused to do stating he did not have the staff or the time to "sit on the phone for 15 minutes" to talk to someone with no medical degree to justify his reasoning for prescribing the medication he did.  Consequently, we are stuck between these two entities over a power struggle regarding money and power.  Yeah, it has sucked. 

But the paperwork has been sent to the insurance company by the prescribing doctor, and the insurance company made it VERY clear that they have four business days to make their decision.  Awesome!  Way to do what's best for the patient!  NOT!  (I won't say who the insurance company is, but I can guarantee you have seen their commercials and how they are there for you as the customer no matter what the situation in your life and always will be.  What a laugh!)  In the meantime, we paid for filling this month's prescription completely out of pocket because everyone who IS involved in my son's life and HAS SEEN him or worked with him has noticed a dramatic improvement in his behavior and thinking and we didn't want to hamper that progress due to a bureaucratic/power struggle showdown.

So here we sit and wait, and wait, and  . . . . . . . . .