Monthly Archives: March 2011

Life Lessons: Living with a Special Needs Child Part 1

As a mom of a special needs kid, there are a few things you have to learn. Some you just learn to live with and others you hope and pray you never have to put to practical use. There are so many different things you could be faced with and every child is different. Here is one of the things I have been faced with.

 If you are a parent of a child with severe allergies to things, one of those things is how to use an EpiPen. EpiPen for those of you who are lucky enough not to have to have in your vocabulary is a device filled with a medication called epinephrine. There are several things this medication is used for. In PA’s case and so many other kids it’s for a sever allergy reaction that is life threating. Up until this past Sat. it was just another thing to keep on hand.

See PA has an allergy to anything peanut so I carry two of these around with me at all times and have since PA was about 16 months or so. However I have not had to use. You usually can avoid peanuts altogether by being diligent and not buying things that have them in the ingredient list. In her case be sure it is not even processed on the same assembly line as other foods that may contain nuts.
So far this is the only thing we have seen that she has a sever reaction to. Not to say this is her only allergy. This poor kid can be put into a clean well rinsed tub of just water for less than 5 minutes and break out in a bad case of hives. We keep Benadryl on hand at all times. She has been known to react to just about anything many of which we just don’t know what she is reacting to. Sat. was one of those times her reaction was of unknown origins.
She was sitting in a basket of clean folded towels eating a pealed apple I gave her watching one of her shows. She sneezed and started to rub her eyes and complain that her eyes hurt. I walked over to where she was and her poor eyes were almost swollen shut. I thought maybe she somehow got something in her eyes so I went for the Benadryl and took her into the bathroom to rinse her eyes. That did nothing so dried her off and took her back in and sat her on my lap to wait for the medicine to work.

After about 50 minutes she didn’t seem to be any better and in fact now was starting to wheeze and sounded really hoarse. I picked up the phone & called the advice nurse. PA was still breathing ok but I noticed her lips were starting to swell. I let the nurse know and she told me I needed to use the EpiPen and get her into the ER. Being I had never done this before I had her stay on the line with me and walk me through it. See it is one thing to have someone show you how to use this, but is another thing altogether too actually give the shot to a crying distressed child. She started to show improvement within a minute or so. By the time we got her to the ER her face was still swollen and red, but she was doing much better. They watched her for a while and she was well enough to go home with medication.

My hubby and I are still unsure what triggered the reaction. Nothing new has been introduced to the home. We are using all of the same soaps and eating all the same foods. I am very careful anytime I bring anything new into the house. Anyone who visits know not to wear perfumes and that this is a peanut free house. This is one thing I have been very diligent about.

Some things are just out of our control. It is all about the life lessons I was talking about. This was just one of many and I hope to cover in posts to come.

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Good Looking Me?

 

Most people know a few things about me. I am a mom to two beautiful girls and the wife to a wonderful understanding husband of 17 years. Also that my youngest has a mild form of autism (PDD-NOS) and SPD (Sensory Processing Disorder). My husband and older daughter are ADHD. We also LOVE Sci-F…

Some people also know I have Carcinoid cancer. I have been fighting this since 2006. At this point I will be dealing with this for the rest of my life. As this is now considered incurable.

There is one thing that comes up every year that will consume my twitter account & Facebook account. NET Cancer Awareness Day Nov. 11th this is the type of cancer I fight with every day.

Fighting a well-known cancer is bad enough (say breast cancer for instance) people know exactly what to expect (for the most part). I almost think it would be easier to just say I had breast cancer just because people can relate to it. When I tell people I have Carcinoid/NETS cancer, I have to explain it to them. There is no easy or clear cut explanation to give to people. It is very complicated and different for everyone fighting with it.

It is one of those diseases the medical community has deemed the “The looking good cancer” because even though it will take your life eventually, you will always look relatively healthy. When I tell someone I have cancer I usually get “Wow you have cancer, but you look so healthy.” OK thanks??? (I think??)…. Then I think to myself … You sit tethered to the bathroom for days on end. Not being able to do your normal every day stuff. Add the stomach pain that doubles me over in tears, wishing I could just die. I can’t really explain to someone in a “nice way” what I am actually dealing with, without getting the “TMI look”. Most of the time I will opt out of trying to explain to someone new and say I am just not feeling well. That brings on a whole different response after you have used this excuse on more than a few occasions.

If you are not lucky enough to have it detected before you are symptomatic. Or before you end up with Carcinoid Syndrome the part of it that will eventually kill you. See

Traditional chemo & radiation do not work for this. When I say doesn’t work I mean usually has no effect on it. It mimics conditions such as IBS, Crones disease. Then add with it flushing (kind of just looks like you are blushing only for no reason and you feel as though your faces and body are on fire). A heart rate feels as though it is so fast you cannot catch your breath. Then the asthma like symptoms that if you were to use an albuterol inhaler you could actually be doing more harm than good. It can trigger carcinoid crisis (which is so complicated in itself you need a separate post just for it). However by looking at me can’t see it. Hence the looking good part.

Three Day Painting Project?

 

I have been meaning to write an entry all week rather than just posting recipes. However this week has been incredibly busy. My 15 year old finally was able to keep her room clean long enough for us to want to go in and paint (the agreement was 3 months; she had to keep her room clean). So my hubby and I for the past two days, in between appointments and such are painting her room.

Yes I know two days to paint a bedroom **laughing** well add in an autistic 3 ½ year old to the mix and well everything takes longer than it needs to be. Also the fact that my hubby is in school and well we really have only spent equivalent of one afternoon in there and we are only half done.

Well two and half walls are done. We have to empty the room, lay everything down then paint for a while. We can’t just leave everything out, because we have to make sure everything is picked up and things are back to normal so my little one doesn’t get distressed over it all.

This morning for instance, she noticed her sister’s garbage can was in the living room. So she picked it up and carried it around the living room till I let her put it back where it went in sissy’s room. She then sees the extra paint cans next to her paint can. She became very concerned that #1 they were there at all and #2 that her paint can would disappear when we were done. I spent better part of the next 15 min trying to explain that her paint can would still be there (I will explain the whole paint can another day).

I was hoping we would be able to distract our little one occupied long enough to paint this weekend, but that did not work out very well. I also wanted to finish this blog entry 2 days ago. Well best laid plans huh??

I am learning patience, which is something I have never been good at. I have always been the type of person to get things done accurate and fast. Mostly because if it takes too long I lose interest. Having a special needs child teaches us patience and that not everything gets done in the time frame you wanted and in some cases not at all. Which tends to drive me crazy.

At any rate I am hoping the girls’ rooms/painting project will be done this week while they are at school. Then I can get back to my projects.

BUGS!!!

  One day her bus pulled up in front of our house, to drop her off. I had just walked out of the house and I heard her screaming. The bus driver went to get her out of her seat and just could not figure out what had happened. He thought she had somehow gotten hurt between the time it took him to stop the bus and walk to her seat. It took us 20 min to get her calmed down enough to figure out what happened. Turned out a fly had landed on her arm and she became unglued, we thought she had been hurt. She was screaming like she was hurt, but not just hurt it was like she was dying. It is funny to think about now, but at the time it was very traumatic and was just the start of her fear of bugs & spiders.

For as long as I can remember, she had a pet spider (still does). She named him Tiny. He was a different color every day. If she wanted to do something it was Tiny who wanted to do it and she would tell us “Tiny color” or “Tiny do it.” She would hold her hand out like he was sitting there. Tiny was a boy not a girl. It was really cute to watch her do this.

She also use to play with bugs. She would find a bug crawling around and play with it. She would spin it or just scoot it along the floor, but never actually pick it up. More recently, she had decided she does NOT like bugs she will scream from another room “BUG!” and we have to drop everything and take care of it for her. Her whole world comes to a screeching halt. Well at least until we take care of the bug. If a bug touches her she will completely melt down as if her whole world has come to an end.

She has gotten a bit better about the whole bug thing. She doesn’t like to be touched by them. If she sees one she comes to get us. Most of the time it takes a while to figure out what it is she is so frantic over, but as soon as the bug is gone all is right with the world again. I still to this day have no idea how or when she went to loving and playing with bugs, to having an unnatural fear of bugs.

Ninja skills and Raisin Bran

  I have mentioned my daughter and her ninja skills in a previous blog post. I think I will give you an idea of what I am talking about. A few weeks ago, my husband was making dinner. I was putting some things away in the kitchen and PA we thought was in her bedroom watching a movie. My older daughter had been getting ready for an activity and went in to check on PA. She called out to me to “Come see what your youngest has done”. Never a good thing when it is put into those words.

It was as bad as it sounded. Although in the grand sceam of things it could have been much worse. I walked in to find the last 3 inches of a box of Raisin Bran dumped on the recliner in her room. Not just dumped but now just crumbs ground into the recliner and floor. At this point I just take a deep breath then look to my PA for her reaction to me finding her mess.

PA was sitting on her bed with a huge smile on her face and says to me “I dump cereal momma”. I asked her why she dumped the cereal only to get out of her the same phrase. I asked her is that something she is supposed to do. She says “yes”…I looked at her and said (very sternly) “NO you are not supposed to dump things like that and you need to sit on your bed.” She looked at me like she honestly had no idea why I was so upset. She promptly got up and went to sit on her bed with the same bewildered look on her face.

I always ask her if whatever she has done was a good idea or the right thing to do. Even though I know full well that she still has issues with knowing when to use yes or no. I think she understands the meanings just not when or how to use them all the time. This makes it difficult to truly know whether or not she understands something.

My thoughts went back to how did she get the box of cereal out of the kitchen without me noticing? Both my husband and I were standing in the same kitchen. Also knowing the kitchen is not tiny, but also would notice her walking past me with a box of cereal…or so I thought. I walked out to get the vacuum cleaner. My husband asked me what was going on… I told him and he wasn’t surprised she did it, just surprised as I was at how she did that without us knowing.

It seems to me like I ask myself these questions a lot. I know it is the way of the child and you have to always have an eye on them, but at some point you are supposed to be able to have them occupied with an activity so you can do something useful like move the laundry or pick up a room in the house. Not needing to worry if the fridge will be emptied or finding a whole box of tissues torn to bits. Even worse having this happen to me on more than one occasion, locked in the garage with the laundry. Lucky there has always been someone home to open the door for me. I do prop the door open with a paint can now and keep one eye on the door while I change the laundry. Knowing she can close the door and lock it so quietly I wouldn’t realize it till it was too late.

Now back to the Raisin Bran situation… I got it cleaned up with no real lasting damage. PA still doesn’t seem to understand when we get after her for something. Not even sure like I said before, if she understands what she did was wrong. Think we will be working on that for a while.

Adventures at Target without the leash

  Ok most will find that an odd title, but those with autistic quiet as ninja runners know exactly what that means. My sweet PA loves to go to Target (well so does her mom *smiling*), but rarely do I attempt this by myself. We truthfully I wasn’t alone, but I decided to take her with me so my husband could look at toys and I would not have to worry about PA wanting something. I wanted to go look at cloths for PA & she loves to look at clothes, so I thought why not.

Started out fine….She stayed close and was easy to control. However when we passed in her words “ballerina dress” (a pink swim suit with a pink tutu) she liked, all bets were off. I didn’t have a very hard time getting her to hang it back on the rack, so I thought I dodged a meltdown. I did dodge the meltdown, but that’s where she started to show her “ninja skills” I was talking about. See she really knew she is supposed to stay with me, but when she sees something *shinny** as we say.. She cannot help herself.

I turned around to look at something not even for 3 seconds turned back and she was gone.. Of course first thought is to call out for her, but with PA wouldn’t make any difference. See she is verbal, but will not answer unless she is looking at you and wants to acknowledge you.. So I thought real fast and remembered the “ballerina dress”. I made a b-line and sure enough she was standing there with the bathing suit dancing around.. It was a happy ending and I really didn’t have to go far to find her. Of course she got a talking to and had to sit in the basket for the remainder of the shopping trip, but reinforced to me the need of the leash when we go shopping.

As far as her ninja skills go. Yes, she is truly that quiet not only when she is trying to escape. She is also has ninja skills when destroying a room. You never know until you walk in the room. Even though you have been in the next room for 2 minutes, but I will revisit her ninja skills in a later post..

Electronic devices & my autistic child

  My husband recently purchased an iPad for school. It was a very sound investment for us. This is a tool that will allow him to do his school work just about anywhere. After he got his iPad, he gave me his iPod Touch. Well not really for me, see PA (my daughter) decided it was hers. We have found there are so many applications out there to help with everything, from fine motor skills to speech therapy. They use some of these programs in her class at school on the iPad they have in the classroom. There are two classes that share this iPad and they are working to raise money for a second one. That way each classroom will have their own.

In theory this should have worked. My husband has his iPad & PA has her iPod, well, since they have an iPad in her classroom and her dad has one, she doesn’t want the Touch anymore. She wants the “BIG iPod”. My husband does have some applications on the iPad for her to use, but the main use is still for his school work. So when he takes it out to use for school, there ends up being some degree of anticipation on PA’s part. She has to wait till her dad is done using it. The conversation usually plays out like this.

PA: Daddy…me talk to you for a minute?
Dad: What sweetie?
PA: Me play wif big ipod? You almost done?
Dad: No. Not done yet. I will let you play when I am done.
PA: SIGH OK…
30 seconds later….
PA: Dad you done yet? When you done? I want play wif big iPod.
Dad: You have an iPod to play with. Use that for now.
PA: But dad…It’s so little. I like BIG iPod now.

That conversation will keep going as long as my husband has the iPad in view. I am still trying to find diversions for her. It is still very new as he has only had it for a week. We still have boundaries to work out with her. It takes a lot of time and energy on our part to set these boundaries. So when we bring new electronic devices into the house, PA is instantly attracted to it.

Now with setting new boundaries and rules, we have to be sure PA understands them, which has proven to be difficult in the past. For instance she has always loved to take all the DVD’s out of the bookshelf. We have always told her (well since she was old enough to do it anyway) not to take the DVD’s out. For some reason she just cannot help herself. There are some days she will get put on time out over and over all day long. She doesn’t understand cause and effect. She sees things and processes things differently. It’s hard for me to get her to really comprehend why these rules are in place. This is a learning process for all of us. Most kids have issues with this, but they learn boundaries & rules fairly fast. They still test boundaries and rules, but they understand them. I am not even sure PA understands which is making it even more difficult.

Along with boundaries of appropriate times to use different devices, then there are the rules for using them. One of PA’s favorite things to do with the Touch was to delete all of her dad’s applications, but not her own. This created many problems when he went to use an application and realized it wasn’t there. This usually happened at church or at scouts. Then he would spend an hour or more reloading applications he lost because she deleted them. He finally found the settings to make it so she couldn’t delete the programs anymore, which solved that problem.

The other thing that wasn’t such a big deal with the Touch was PA was able to use it pretty much whenever she wanted. It wasn’t as much a tool as the iPad is. It was (and is) used for entertainment mostly. So we did not need as many boundaries and rules with it. However, with the iPad we are realizing we need far more restrictions on it than with other electronic devices we have or have had in the past. My task for the next few weeks will be getting PA to learn and accept the rules and boundaries for the iPad. Wish me luck :o)