What kind of day is it - Part 1 - A good day

I am going to do a generalization for you. So you know you are not alone. I know I have felt like I was going insane some days, wondering if it was just me, but in this 3 part blog (today, tomorrow and Monday) I will talk about what I consider Good days, Bad days, and what's in-between.

How to do qualify a good day? Good days come in several versions (in my book anyway).

First, there is the day you realize one of the tics that come with Asperger's have disappeared and you celebrate with your little one, knowing full well that another tic might come along. HistoryBoy had a habit for a little while, that if someone asked him a question that required an emotional response that he couldn't answer he would baa like a sheep. At first I laughed, then I scolded. Once I realized he couldn't control it, he and I tried to work on it together. Eventually it disappeared. You celebrate the little victories, maybe not so little victory when you realize how hard it was for him to overcome.

Next, there are the days when you realize that there hasn't been a meltdown of any sort. Don't get too excited, it just might be preparing you for a horrid day tomorrow, but enjoy it and praise your little one for having been able to cope with everything that he was handed in a day and not melting down. Maybe it was an "easier day" of being at home with just you but that doesn't make it any less significant for your child to realize what he can accomplish. I think it gets easier AND harder at the same time as children get older to accomplish this. (I will go into the more later in another blog)

Also, there are also the times when you see your child struggling to keep cool. You know they are headed toward a meltdown but they are trying hard to not melt down and to keep themselves under control or just letting you know "Mom, please get me out of here, I can't take this anymore. I am going to loose my noodle (or some version of that)". These are hard won skills. They should be praised. Even if a meltdown does occur, you need to acknowledge what has occurred as a victory for your child. They are trying to overcome what scares and overwhelms them, whether or not they succeeded, you are headed in the right direction and THAT makes it a VERY GOOD DAY!

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Living with Lupus

So far my post have been about HistoryBoy my wonderful son. This blog is about me. I was diagnosed at age 15 with Lupus. I have learned how to cope with it. At least I think I have. I have been on and off steroids and anti-inflammatories over the years. Someone with cold can sneeze across the room and I will catch it. It's how my immune system works. But about 5 years ago things changed. I was hospitalized with complications following a concussion. I couldn't speak. It was awful. Maybe the pain started before then but I am not really sure, but it is then that I know it began to get progressively worse. I was diagnosed with fibromyalgia in 3 years ago. Throw asthma in there (which thankfully is under control) and migraines (which are not) and I feel like I am riding a roller coaster. One day my body seems like maybe it might be ok and I get an hour of cleaning done (by cleaning I usually mean trying to vacuum and do laundry) and then I feel so weak and ill I can't stand up anymore. Once HistoryBoy is in school, I will try to put a load of laundry in, and then I lie down until lunch. Then I lie down again until he gets home so I am rested and can help him with his homework and give him the attention he needs, which ends up usually being me sitting with him for 1/2 hour or so then going to lie down. and checking on him every so often. I am lucky he is such a good kid and so into watching programs like the history channel that I don't have to worry about what he is getting into if I lie down for a bit. Sometimes he comes in and sits on the bed and will do his homework in here or turn on the tv in my room so he can be near me and "keep and eye on me" Sometimes I don't know who takes better care of who.

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Focus, Discipline,and Respect

I was against Karate for HistoryBoy when it was first suggested to me. Why am I going to teach martial arts to a kid who grabs others kids to get their attention or hits then when they ignore him. It seemed a recipe for disaster. But we have a summer rec program here in our town and I signed HistoryBoy up for the Karate class to see what it was like. Oh my God! I wanted to wrap the man up and take him home with me. My son sat when he was supposed to sit, stood when he was told. I took HistoryBoy to this man's karate school the next week for a demo class, and watched the same thing happen in class. I signed him up then and there for classes. I watched HistoryBoy respond to him. It was amazing. HistoryBoy was FOCUSed. They train them to RESPECT themselves and others. They teach self-DISIPLINE and restraint. Even when he has gotten picked on. He has never used his karate on anyone except to defend himself when attacked. I have watched his self confidence grow through it. I realize that it is not for every child. But I think each child, especially an autistic child needs an outlet of some sort. He learns at his own speed, he is not punished for not learning it as fast as anyone else in the course. They are awesome with him. Now he has been in karate for 4 years. He hopes to go for his black belt in December, if he can keep himself focused and memorize on the katas and combinations. He can do anything he puts his mind to.

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Please Don't Let Me Get Dirty!

You know how most kids are into playing in the dirt and mud and making messes. HistoryBoy was not like that. He would NOT touch a finger paint. He hated digging in the sand at the beach. He loved playing in the ocean but he had to wash off the sand. If he got food on his hand he had to wipe it off. These were all big clues to a sensory issue, but we always joked that he got my mom's clean freak genes. These are issues that can be worked on with most kids. We kept trying working with fingers paint. Here was something I tried. I used a paint with water book and let him dip his finger in the water. His fingers stay relatively clean and he colors. He thought it was neat. It is all in the baby steps. He is to the point now, where he will use fingers paint but he has to be allowed to wash his hands off as soon as he is done. And we let him not feel it was an issue. He didn't like having his hands dirty, so I had wipes or he made trips to the bathroom to wash his hands. It is what made him feel comfortable. Now he loves puddles and splashing, although he is usually wearing his sneakers at the time. Sand is something that he found out sea turtles build nests in so it must be cool to play in. Again, baby steps. We all take the world in in our own way.

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

The first time you realize something is different about your child - Part 2

Yesterday’s blog was not long enough and didn’t say as much as I could have said. I should have said it took me a long time to realize that HistoryBoy was different from other kids. Not just different but different enough to be excluded by others his own age. In preschool kids pretty much do their own thing; I play with this you play with that. They may play with the same toys but they don't always intersect play. HistoryBoy also had VERY definite ideas of how to play. You had to play it his way or you couldn’t play with him. He would get very agitated. I just assumed it was immaturity. He was a boy, he was a born 5 ½ weeks early. It would all come in time. But it didn’t. His preschool teacher was the one who recommended we get him evaluated by the child study team. Why? Won’t he be ok in Kindergarten? He has all the skills he needs. Should I have realized he needed help sooner? Did I do something wrong? Did my mommy radar go off somewhere? All of these thoughts went through my head. I went home all upset, cried and I realized I couldn’t change anything I had done up to that point. I could only go from here. Kicking myself wouldn’t help HistoryBoy. So I set up the Child Study Team Evaluation and an appointment with a pediatric neurologist. It was just the beginning…

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

The first time you realize something is different about your child

You want to cry. Why should he be different? Are you sure little Sally next to him isn't just amazingly gifted or something? He knows his numbers and letters. He speaks well. Ok yes I know he can't sit still very long but he can stay on one topic, as him about trains or start singing a wiggles soundtrack and you are good for hours.

These traits confused the doctors. They decided ADHD was the most prominent condition and once that was under control we could address HistoryBoy's other issues. It was amazing. It took some trial and error to find the right medication but once we did, it worked wonders. So much so that it left little doubt that he also had Asperger's, once the ADHD was under control. With his ADHD under control. he reads almost like some textbook cases of Asperger's. And there is no magic cure or pill for Asperger's, it is trial and error and therapy and hope it works.

The scary part comes now. HistoryBoy is on the cusp of puberty. He is only 10. But we can tell the hormones have started the telltale baby mustache, he has gotten a few zits, and started with mood swings, more so than the normal Aspie ones. Fun stuff I tell you. If anyone had advice on that I will GLADLY take it. I am so not ready for a teenager yet. Like I said he is still 10, he will be 11 this summer... it never gets easier

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Easter Sunday started out well...

Part 1: The Easter Bunny made his yearly visit we got ready for church, minimal hassle. We got to church early and got a seat in the balcony which my son from here on called HistoryBoy loves. I personally have trouble walking up the stairs with my hip but that is another issue entirely, but it makes him happy and he will behave all through mass. All is going well until about halfway through he tries to stand the kneeler up. Apparent it was not attached to the pew so it flips over and off under the pew ahead of us. HistoryBoy just shut down. We got the kneeler back in place but he just put his head in his lap and rocked for a few min. I got him back on track mostly by the Our Father, but he was still a little off. Mass ended, crisis over or averted sort of...

Part 2: We decided to go to the Train Station for lunch. We love the food there. HistoryBoy love it because any of you who know him know his first love was trains long before he was the HistoryBoy we know and love. We were seated and ordered and everything was fine, until a bee entered our area. HistoryBoy cannot be in the same room as a bee. We shooed the bee away, got he re-settled down and the bee came back and he ran out of the room and wouldn't come back. We ended up having to eat our meals in the other room from my parents because the bee was still happily buzzing a the outside tables where my parents were eating.

Part 3: After a rest for myself at home, we went to my mom's to help with Easter dinner prep. HistoryBoy stood on the steps waiting, watching out the window for a full hour, waiting for my brother to arrive with my 2 yr old nephew. He wouldn't move from that spot until they arrived because he didn't want to miss them getting here.

Part 4: It was a long day.Dinner was great, Everybody ate everything they wanted. But HistoryBoy is exhausted and now easily upset because he is tired. We give him two chores to do, but apparently that was too many, he crashes and burns a starts to bang his head against the wall tonight 3 times them he stops. I tried to get him to stop this behavior but he tells me it calms him, so while it scares the craps out of me it makes him feels better, I think I need the psychologist to explain that one to me...

Each piece had its good parts and each piece had a Aspie trait show up. But if my experiences help you, then it has done some good. :) Look forward to hearing from you

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com

Asperger's Syndrome is not a disease!

I heard someone today refer to Asperger's as a disease. Asperger's Syndrome is very high functioning autism. People who have Asperger's are generally socially inept and immature for their age. They also tend to obsess over one or two things that interest them and not much else. Social interaction is very difficult for kids with Asperger's.

They tend to bore other kids because of their single minded obsessions, and thus get picked on a lot. They also get easily bored or frustrated with other kids because they cannot understand why the other kids could care less about the difference between the Titanic and its sister ship the Olympic etc. Also, people with Asperger's have a hard time understanding body language and facial expressions. This makes it difficult for them to realize that other people want to end a conversational topic, or have a turn to talk, or whatever.

It's hard to watch your child struggle. I try to get my son to talk about how he feels to make it easier and he tries and then suddenly he changes topic to an airplane disaster and I know he is done for now. He works on self-control and how to control his outbursts and meltdowns but sometimes he can't. We've worked on visual clues that is a work in progress..., he is still MUCH better with verbal clues, like Hey let's talk about something else. But when talking about feelings when he is done, there is no getting more out of him when he doesn't want to talk about it. When I push, I can feel him edging closer to a meltdown, so I let him go back to his comfort zone for a bit and try again later.

My son is awesome. Being diagnosed with Asperger's doesn't change that. He is still the same smart, sweet, silly boy, he just adapts differently, and sometimes needs helps adapting to the world around him. As he has gotten older he needs less help because we are teaching him coping mechanisms.

If you are out in a store today and you see a mom with a child that is melting down, don't judge or question her parenting skills (I used to be that mom and HistoryBoy was that kid overwhelmed but the hugeness of the store and number of people and huge amount of noises) Be grateful that is not your child. Ask god to give her the patience and strength to handle what god has given her and help her handle her child's fears.

I would love to hear from you. Please feel free to leave a comment or email me at teenahope@gmail.com