Tag Archives: autism

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

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A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

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Found an old ham & cheese sandwich from Subway.


Also in her closet:
IMG-20130302-00017I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.

People think they know autism when they see it? NOT

Something that has been bothering me for a while is someone who visited my family a while back & spent maybe an hour or two. This person told another friend my daughter was not on spectrum. Now this person has never up till that day spent time with my daughter. As far as I know she knows nothing of kids on the high end of the spectrum. Every individual with Autism is unique.  No two diagnoses are the same.  Just like each person has a different personality, each person has a different level of Autism.  Yet she is an expert & is now telling others that I am making up my daughters autism?

 

Why would someone make that up?

If she were not on spectrum why do I have a 2 binders 3 inches thick full of reports, assessments and doctors reports about her disability?

How could I manage to get services from a school district & have her go to a special pre-school for mild to moderate autistic kids for two years?

Then have her in a similar classroom for kindergarten?

School districts are stingy about who they give services too and unless your child has a definite disability you do not get anything.

 

I guess this person’s argument was my PA did not look or act like she was autistic.

 

So I ask you:

  1. What does an autistic kid” look” or “act” like?
  2. Can they never behave and seem “normal”?
    1. From what I remember on this day PA was stimming really bad. This person had made mention she was “just hyper.” Really? I have never seen an NT child stim because they were hyper.

 

My daughter can usually behave for company fairly well.  Really the only clues would be her stimming. Even with company she can manage some eye contact for short period of time. People who do not understand autism may think she is “normal” maybe just a little high-strung. However unless you see her on a regular basis spend a little time with her, maybe encounter her in an unfamiliar setting you will not see what we see & deal with.

 

What I would like to say to someone; who either does not believe me or doubts how it really affects us; is unless you have walked in my shoes, spent the time to get to know my girls & family; unless you have spent more than an hour or two and seen PA at her best, worst & everything in between, you have no right judging me or making a call on my child’s diagnosis.

 

In case you are curious her official diagnosis is PDD-NOS (pervasive developmental disorder not other wise specified) with SPD (sensory processing disorder), severe food aversions, epilepsy, hypertonia & chronic constipation & GI distress. PDD-NOS is on spectrum. This diagnosis may be on the high end of spectrum but it is still ON SPECTRUM.

 

Judge not, lest ye be judged.

Cheese and Lettuce Delight

Tonight PA decided she was going to cook. I heard her in the kitchen making all sorts of racket. I called after her and asked her what she was doing & she said “I making Cheese  Lettuce Delight momma.”

So I went to see what she was up to because there was a lot of noise in the kitchen and this usually is not a good thing. Sure enough she had the lettuce and cheese out. She asked me for a plate, so I got one for her. Then I went to grab my camera, because this is always something to document.

The following is in her words (as far as the explanation under the photos).

“First put lettuce on plate”

“Then cheese on it”

“Have to put in bowl cause it messy”

“Stir it up”

“Now eat it mom. I make for you”

Of course she made it for me, after all it is green and she would never eat anything on purpose that was green. Not only because of the color but because of the texture. I have to give her credit. She did do a really good job. She also did a good job telling me what she was doing. I guess sort of a lesson in being able to explain something in steps. Something that is rather difficult for a child with ASD (autism spectrum disorder ).

Bugs revisited…..

So I have written in the past about PA’s fear of flies & ants (well bugs in general). This is not a “Yikes a spider” type of thing but an out right screaming tantrum refusing to step into the room with the bug wakes up with nightmares type of fear.

I made the mistake last summer to take PA horse back ridding in hopes it would help her core strength & balance issues. Well it backfired on me. What is the one thing you cannot get away from around horses? You guessed it Fly’s & Ants. After that disaster of an outing it took her 2 weeks before she would sleep the 4 continuous hours a night before waking.

Now back to the present. We are very carful about the bug issue around here & it’s not easy because for some reason we moved to a place where the flies are HUGE and abundant. My husband is always on the look out for flies & actually carries a flyswatter around the house with him. One of these days I will make him a holster for the thing **laughing**.

So over the past few months we have not had a bug incident & no real mention of them (thank heavens). That is until very early this morning (4am to be exact). I woke up to her screaming at the top of her lungs that there were ants in her bed & just sobbing about how they were crawling all over her. It took my husband & I a long time to get her to calm down & had to move to the front room before she would calm down. Even then she was still acting like she had ants crawling on her. Needless to say she did not get back to sleep & thank heaven to my Shann (her 16 year old sister) for taking over for us after she got home from seminary (early morning bible study). My husband & I were able to get another hour or so before we actually had to get up & get going.

The rest of the morning was traumatic & she was whiny & defiant. I felt bad for sending her to school that way, but we needed a break. Now she is home & obviously tired. I still have no idea what brought this on. The only thing I can think of is that she has been picking at a hangnail she got & she is interpreting the sensation of that like she has ants crawling on her. We often have to cover up sores on her or she will pick obsessively at them until they are covered & out of sight. However she will take Band-Aids off & will not keep them on. Then she keeps picking at her sores. It really is a no win situation.

So I am left wondering how long she will not be able to sleep & how long she will keep having nightmares. I actually had thought she might be hallucinating this morning, cause she was wide awake & still was picking at her skin like she had ants crawling all over her. I am just not sure how to approach this. Even if we try to talk to her about it just makes her think about it more.

So frustrating sometimes when you just don’t know how to solve a problem like this with a small child let alone a special needs child.

Symbolism and the Praying Mantis

This morning I walked outside & saw a Praying Mantis one of these on one of my roses.

We have always seen lots of these around where we live & I have loved watching them. They are very purposeful and never make a move unless they are positive it will be successful. I also have worked in many exotic pet stores & took care of & sold them. However, I have never bothered to look up the symbolism. Until today.

According to WickiAnswers:
Praying Mantis Meanings in the Realms of Animal Symbolism
The mantis comes to us when we need peace, quiet and calm in our lives. Usually the mantis makes an appearance when we’ve flooded our lives with so much business, activity, or chaos that we can no longer hear the still small voice within us because of the external din we’ve created.

After observing this creature for any length of time you can see why the symbolism of the praying mantis deals with stillness and patience. The mantis takes her time, and lives her life at her own silent pace.
Now my life like so many of our lives is full of chaos & we are so busy we neglect to slow down & think about things. Since I was diagnosed with a rare & incurable cancer, I have been searching for answers trying to simplify my life & find more peace, quiet & calm. Reading about the Praying Mantis I know I need to find these things. The trick is how to achieve this in our lives.

Having a special needs child and or serious illness our lives will never be as calm, peaceful or as quiet as we would like. I think the only times I can find these things is early in the morning when everyone is still asleep or late at night when the family is sleeping. My favorite time is in the middle of the night after I have given PA her drink and she is lying in my arms sleeping. She is so peaceful & sometimes sit there holding her for an hour or more.

Since having her I do not think I have had more than a few nights where I have gotten more than four hours of sleep at a time, on any one given night. Usually PA goes to bed at 8:30 then is up again at about 1:30, & again around 4:30. Now I know this is not conducive to me dealing with cancer & I know that I do not sleep as much as I need to. I know if I did, I would be able to function much better and possibly not be as sick all the time. In fact, my husband tells me all the time to slow down and ask for help.

However I do not know about any of you, but I am not good at asking for help. Before I can think of asking usually, it is easier just to do it and then be told, “You should have asked”. Well yes, I should have, but you could have asked before I actually got up after mentioning it needed to be done. My husband is actually good at asking but many times I have already gotten up and started to do the task & then I get upset when he asks me if I wanted him to do something. I know I need to work on this.

Therefore, my question is how you try to get more peace, quiet & calm into your lives. This is a real question, because I am struggling with this myself. Maybe after seeing some of your comments we can help each other.

A Day with PA in Pictures and A Few Words

I thought I would do something a little bit different. This is a typical day with PA. Not everything we do together, she does lots with her dad and sister. We try to do things to help with her various developmental needs. We do things a little different from many families with special needs kids, but this works for us right now.
I just thought you would like to see a day with PA my way….In pictures..Enjoy 🙂

This is what I see when I can focus my eyes in the morning.

Then I go check to see what PA has put on her “doll” the Buda.

Before I even wake PA up I need my one vice my Diet Coke.

Mornings are never good for PA so I skipped the getting ready part & went directly for “Ready For School”

On our way out to wait for the bus we walk through the garden to see if there is anything we need to pick.

This starts my time. I usually have lots to do and almost NO time to do it. I am a frazzled mom. I start lots of projects and almost never complete them. I also do try to do housework during this time. Some days I even get to go out and do errands.

Then PA gets home & it is snack time. She has a very narrow range of foods she will eat and this is about it.

We do crafts. Play dough is her favorite. We also do painting and coloring.

We also work on self-help skills. PA is just now getting to where she will put on socks and shoes. She thought her dads black dress socks would go with her Sunday shoes. Backwards no less. I had to take a picture because it was number 1 an accomplishment for her and number 2 is was so darn cute!

This is what we call “going shopping”. This is how PA will get her food. We have had to make it fun for her and interesting. I picked up this shopping cart last year when we were having issues getting her to eat and it has done the trick. We still have many days a week where she will not eat, but she is doing better.

It’s play time till bed.

Story time before bed.

Then while she gets her story we also do her medicine. We also do this in the morning too. Also includes her nebulizer treatments morning and night as well.

Before bed we also set our clothes out and get her backpack “packpack” as she calls it.

PA Sleeps for a few hours then she is up again. She gets up 2-3 times a night to have her drink, because she won’t eat the right or enough food in one day.

This makes for long days for me. I don’t sleep well and have not since she was born.