REBOG - Please Don't Let Me Get Dirty!!

Reblog fron 4/27/11
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 larger 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 finally got 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.

As a Note: HistoryBoy nows loves to paint.  He doesn't like his hands majorly messy but it's ok if some paint get on him.  I pointed out that he wasn't the neatest eater sometimes, with his shirts or pants catching what missed him mouth.  He laughed and joked that his body was making up for his hands not wanting to be be messy.  Those baby steps are making me smile each day.

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

REBLOG: Some Days I Forget

Reposted from 8/30/11
Some days I forget, or almost forget HistoryBoy is different from any other child because things are going so well. No using mommy as a life line, no hiding, no meltdowns, just a kid being a kid. It was great. 

Until yesterday...

I am not sure what set it off, or even if it had a trigger. He was playing nicely with his cousin in the morning but even then I could tell he was a little off because I kept having to call him and repeat myself. Then he wouldn't eat lunch even though it was pizza, and if you know HistoryBoy that is one of his favorite food groups. Pizza, Chicken Soup, Grilled Cheese, Hot Dogs and Steamed Dumplings.  If I made these every day of his life the child would be happy as a clam. Thankfully he can and will eat other foods too but is VERY gratefully when I have his favorites. But anyway he wouldn't eat, I got him to drink some water but i think he took two bites of pizza.

We head home. It is time for me to lie down and rest. He comes and lays next to me and clings and I ask him what is wrong. He can't or won't say. He just clings. I cuddle him as best I can. I fall asleep and when I awake I realize he has fallen asleep too. I have woken just in time for me to leave for my Doctor's appointment, and I gently awaken HistoryBoy to take him with me. He clings to my arm and doesn't want me to go. I have to go so, I tell him I will drop him off at Mimi's house and he can get some cuddle time from her while I go to my appointment.

I call my mom to make sure she is OK with this arrangement and she says she is. I also let he know he is way off. I do not know what is off but he is not talking, just clinging. I didn't say it but I was thinking, at least he isn't melting down. So I went to my appointment and came back. We had dinner at my mom's and HistoryBoy did eat a little Spaghetti and Meatballs. Not as much as I would have liked. I only gave him a little and he didn't eat all of it, and he wouldn't drink any of his milk. He just kept telling me he was full. After we cleared the table, he wanted me to sit with him in the living room. I sat down and he climbed into my lap. I do need to point out that HistoryBoy is now 11. There is a lot more to him, mostly limbs, looooong legs, than there used to be; he weighs 75 lbs. I shift his weight so it is not really on me and more on the chair. I try to get up after a few minutes but this is where he wants me, close to him. I shift over, so he can sit next to me in the chair and he "allows" that as long as I don't leave him.

After a while we leave to head home. At home, I try talking to him but he isn't opening up. He just says he feels off. So either he doesn't know what is wrong or can't put it into words. A little while later there is a knock at the door HyperGirl and her sister, SassyGirl (HyperGirl came up with the name for her sister) came over. They seemed to bring HistoryBoy out of his funk. He showed them, his new room, which was almost done. And he chattered to them some which I saw as a good sign.

On another note...
The first thing out of HyperGirl's mouth when she saw HistoryBoy's room was "Cool, bunk beds! When can I stay over?" Don't worry Michelle I said NO! Then SassyGirl pipes up "Well I can stay over, I'm not his girlfriend!" Again I said No. LOL HistoryBoy was just laughing, which I took as a good sign.

I'd love to hear from you! Leave a comment or email me at teenahope@gmail.com

Life Training an Autistic 13 Year Old.

Life shouldn't overwhelm you on a daily basis, but welcome to our world, right? In trying to talk to HistoryBoy about the future we've hit a few stumbling blocks. Most times, I can't talk about his future without him having a full blown panic attack. Normal? I think not. But why rock the boat now, he's only 13?  True, but he has to develop some skills for taking care of himself.  I cannot do it forever and I wouldn't want that for him or I either.

Our first big hurdle was simply getting him to make his own breakfast and lunch.  I should say that he will willingly raid the fridge and clean me out of lunch meat without eating a slice of bread on a regular basis if unchecked and he knows how to microwave hot pockets and hot dogs, so he won't starve. But is that living or taking care of himself? 

We talked about it and he understand that is isn't just about now but about the future.  What if some day he wants to cook dinner for a girlfriend.  Does he think she will be impressed with hot pockets?  He came to realize it is a skill he will need even if he is not utilizing it now.  (YAY ME!) 

Another bigggie is me not having to remind him, wash you hair, brush your teeth.  He has been doing these things without reminders more and more frequently.  If I could just get him to remember his meds 100% of the time without my help, we'd be set!




Also, He has been making his bed which is a HUGE thing too.  He used to fight me on it all the time. "Why do I have to make my bed?  Why do I have to clean my room?"  The clean room thing is still a work in progress but he is making his bed with regularity.  He knows how to vacuum, fill/empty the dishwasher, take out the trash and mow a lawn so he will be able to do those things for himself in his own place when the time comes.  For now, he just doesn't mind the chores, as long as I don't bug him about his room.  Remember that Berenstain Bears Book.  That is what his room makes me think of but, eh, one thing at a time.

He wants to be successful, so I am confident he will be.  We just have to take it one day at a time, one skill at a time.  With the knowledge that, one day, who knows how soon, he will need them.

I'd love to hear from you
teenahope@gmail.com

Blog Reboot! ASPERGER'S SYNDROME IS NOT A DISEASE!

Over the next few weeks you will see new posts interspersed with some of my old writings to rejuvenate my blog for you (and for me!) To remind me WHY I started this all in the first place

Starting with today, (Originally published 4/23/11)

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.

   So, when 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

Sometimes you forget...

He has been doing well, Asperger-wise for a while. He can be quirky but he has been mostly happy (once his meds were adjusted).  Yet out of the blue comes a day (this past Monday) where he is almost completely non-verbal. He was not feeling well so that contributed to it, but he had a Dr. appointment and he is usually good with Doctors, answering their questions but he wouldn't even look at the doc.

Now normally I can try an coax or cajole he into a better mood, or he will want to cuddle, or curl up next to me with the blanket over his head until he feels better. Today when I try to touch him, I get hissed or growled at.  Fun times.  And of course Angus is out of town for work so I am coping on my own. I have done it before but I have gotten used to sharing the load.

By Tuesday afternoon he is some better, his mood is not happy but he isn't hissing and growling.  I can get one word answers, which are mostly "no", and an occasional "Leave me alone." Along with this he is not eating, so while I know he isn't feeling well, he needs to eat to feel better.  I get tired of arguing for food and finally break down and hand him a bag of cookies. (At least its something) So other than gatorade, some soda and minimal food, that's it for 2 days.  His doc put him on an antibiotic on Monday so because he hasn't eaten he awakes with diarrhea Tuesday night, throughout the night, into the next day (today).  The family doc has no openings until tomorrow. So we wait until tomorrow, hoping this stops because using Imodium isn't allowed because just in case you have a virus on top of infection, it wont "go through" you completely. YAY!

At least now, he is a semi-happy kid.  He is watching YouTube videos and laughing. So it's a start AND I got him to eat half a bowl of soup and some shredded cheese.  I just keep telling myself tomorrow will be better...

Being a Mom

I love being a mom. I don't know if I can ever say that enough. It is a hectic, sometimes thankless job, but watching him grow and change everyday is AMAZING. He has grown from a child who struggled everyday to handle noises, distraction and generally being overwhelmed by the world to a tween/teen who know what his limitations are.  

• He can say Mom I NEED to get out of here now when he can't handle the situation or is going into sensory overload.  
• He can tell me Mom I need another pill, my medication is wearing off and I need it to help me stay calm.
• He has his own tastes in movies and music that are no longer just listening and watching what I do.  
• He is a compassionate, caring, loving young man who wants to help and will help anyone who needs it.
• He has a love of music that is wonderful to see and a beautiful voice to match.

I am profoundly grateful that God gave me such a wonderful present, even if I wasn't quite ready for it. He knew what he was doing and I can't imagine my life without him.

So What, My Son Doesn't Like Your Noise, DEAL With It!

HistoryBoy has a bad habit of telling people to shut up, in public. Ok, we have gotten him to MOSTLY not say shut up but he still turns to me and ask me, "Can you please make them BE QUIET?!," as if I have some magic noise control over the universe and the people in it. In his world I do, I guess, up until now, I have modulated the noises as necessary, kept us away from the noisiest venues, brought along his head set when I thought he might need them.

But he is adapting on his own now, for the most part. He has been doing well. He has those headsets, but he doesn't use them all that much unless it is going to be REALLY loud. He knows how to modulate the noise for himself to a certain extent, but sometimes, a baby crying, or a couple arguing, and he just can't take it. It's as if his brain reached critical mass and is going to explode if you do not shut up right now. LOL

I feel bad for the mom of the baby, it's not her fault my son can't handle it. My son was probably that baby or that screaming kid at one point, and I point that out to my son. He tries to cope but I guess there are just certain noises that he just CANNOT tolerate for more than a certain amount of time. It is to the point where I am not going to force the issue, I just let HistoryBoy move on. Get out of this area HB. I am not done shopping for what I need but You can go stand at the end of the aisle and wait for me. He is old enough now.

As he gets older, I hope it gets better. I really do not want to see him doing this a few years from now, but he is 11 and it's a progressive thing right? So for now, everyone will just have to deal with the fact that my son doesn't want to deal with your noise.

Strange Bedfellows

HistoryBoy has a strange method of sleeping. We used to call him PillowButt at a young age. He would steal all the pillows and sleep on them in a big lump. Now he is 10 and sometimes that nickname can still apply. It is strange though. One night he needs to sleep on top of every pillow or stuffed animal he can find. The next he needs to sleep on the floor because the bed is not comfortable. Some nights, I have found the bed full of wooden trains, or metal planes and when I try to remove them he wakes to tell me "NO, don't they help me sleep" I do not know if this is an Asperger's thing or just restricted to my son, but it stumps me.

We have bunk beds in his room for just this reason. One bed has a mattress, one does not. If he wants to sleep on the mattress, he can, if he wants to sleep on the wood, he can. He doesn't always sleep well so maybe these methods help him try to control his sleep and he is trying to make himself sleep better or feel more secure. If this is the case, he's not talking.

Not talking is not new. We all know that one, but in this case, it makes it very tough to figure out how to know what to do. He will flip flop back and forth from wanting the softest blanket to sleep with to the hardest surface on. I try to accommodate because I found not accommodating just makes it harder to get him to sleep that night and/or impossible the next day. Someone recommended a weight blanket to me for him to sleep under and I am looking into trying it for him. Once I get it, I will let you know how it goes. Maybe it will help, I don't think it can make it worse. I'll keep you posted

Please Don't Overwhlem The Autistic Child

Most of the time HistoryBoy seems like every other 10 year old. He will run around at recess playing cops and robbers (as long as his two best friends are there). He plays with Madison our Black Lab Retriever. He is kind and loving. But when he is different, it is very visible.

One day several years ago, I am trying to remember which classroom he was in. (It was 1st or 2nd grade) But it is sort of irrelevant. I was room mom, as I have been I think every year for HistoryBoy. I put my name in with a note that says if they is a mom who wants it and hasn't been room mom, let her have it. Must not be a lot of room moms out there I guess, because I get it each year. LOL :) Anyway, I leave the room, for a bathroom break or to get something, I don't know. When I come back in and my son is cowering under his desk, rocking.

I go to him, What is wrong? I am immediately approached by someone whose name I do not remember, but probably looked like a troll, and not one of those cute troll dolls, NO a Lord of the Rings CAVE TROLL. Yes I feel better now. She told me that my son had pushed her and would not come out to apologize ....

OK... Why did he push you? What happened? "Well I saw he had one of those cookies on his plate and you said he had allergies so I was taking it from him. I told him to stop So he pushed me and went under his desk and now won't come out,"

I gave him that cookie. He CAN have it. He knew it. He does not respond well to adults yelling at him and taking away things his mother has given him. He has Asperger's, now he is melting down. He should not have pushed you but he is in no condition to apologize to you right now and will not be for a while until he calms down. "Make him do it now."

At that point, before I pushed her myself, I told his teacher I was leaving and signing my son out. It still took me about 10 minutes for me to convince him to come out from under his desk. But I was done with the evil troll lady.

Then another time we are out at Target and HistoryBoy is looking at baseball cards (actually I think he is looking at those build-able transformer and pirate cards but anyway) which are right by the check out lanes. And this old guy apparently think HistoryBoy is up to no good because his mom (me) is not standing with him and he (HistoryBoy) won't answers any of weird old guys questions.

When I approach with my cart I can tell HistoryBoy is approaching meltdown city. His eyes are almost tearing. He latches on to me an hides behind me. "Is that boy deaf or mute?" No. "He was getting into trouble, stealing stuff. I caught him just in time"

Now, Creepy old guy is not a Target employee, apparently he is just a guy there to scare my son. So I say 'My son was looking at the cards while I went to get laundry detergent. He was picking out what he wanted to get.' "He won't look me in the eye. He is up to something and he won't answer me when I ask him a question."

This creepy old guy may mean well and all, hey if HistoryBoy was stealing I would want to know, but I know he wasn't, he just doesn't talk to adults he doesn't. So today instead of saying My son has Asperger's, and getting a blank stare from Mr Creepy. I just say My son is autistic. He looks at me and says "Oh, I had a cousin like that when I was a kid." And he walks away. O-ok.

How do we protect our children from all the people who would yell at them and overwhelm their senses, some of them well meaning, some of them jerks. Maybe I should just buy/make him a T-shirt that says, it YES, I have Asperger's, and YES it is a form of Autism. Today may be ok, tomorrow not so much. I think we could all use a shirt like that!

Long Road to the National Anthem

HistoryBoy loves music. It helps calms him, soothe him, keep him on task when he needs it. He loves to sing, to perform for me and his Mimi, but we are his comfort zone. Ask him and sometimes he will say he wants to be the next Justin Bieber. I am not going to discourage from something he truly loves (but he also loves legos and history and he IS 10 so...), but I have tried to make him see he has to deal with people in a job like that. As we all know, people skills are not our Aspie best traits.

This school year, HistoryBoy participated in his school's 4th grade choir. (I will have another blog about the stresses and such of this but that is for another day) He learned to sing beautifully, Somewhere Over the Rainbow in his 10 yr old soprano voice. Also, several others I recognized from when I was in music class way back when, and of course The National Anthem. He would come home singing every day he had music class or choir.

Now the amazing part is that his 4th grade choir was invited to sing at the National Anthem at the local minor league baseball game. He did not where headphones to cover his ears from the noise and he stayed to watch the fireworks. This could/would NEVER have happened 5 years ago, maybe even 2 - 3 years ago. He has come so far in that amount of time. He has worked so hard to be able to overcome his issues with loud places and lots of people. He still isn't always comfortable in crowds or with noise that may always be a problem.

What it comes down to is he CHOSE to perform at the game because he loves the National Anthem so much and didn't allow himself to be overwhelmed by the noise of the crowd or the applause. I left at the beginning of the 3rd inning. HistoryBoy stayed with Angus because I was too tired to stay for me but he wanted to stay. He WANTED to see the fireworks display after the game, and while I wasn't there to see if he covered his ears from the noise the fact that he wanted to be there at all says so much.

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

Asperger's is not alone - Part 2 - Anxiety Issues

I though about calling this blog "What does he have to be anxious about?"

Anxiety seems like such an adult word. Most of my friends and family know that HistoryBoy has a mixture of health issues yet when I mention to people that HistoryBoy has anxiety issues. They look at me strangely. "What does he have to be anxious about?" Almost everything, anything can stress him out. What will happen on his TV program if he doesn't see the end? We don't have juice boxes in the pantry, what is he going to have for snack tomorrow? If my two best friends are absent from school who do I play with on the playground?

These don't seem like huge problems. The TV show is most likely on again, or I could record the end of it for it. I can go to the store to buy more juice boxes. He could play with someone else on the playground at lunchtime. But it isn't that simple in an Asperger's world. I wish it was for him. For him, that TV show may never be on again, an he NEEDS to see it end. He knows the only way to get more juice boxes are to go the store but he really doesn't want to brave the supermarket to get more, so what should he do? And as with all Aspies, his social skills aren't quite up to par, so his friends are his comfort zone. They know his, they play with him, they allow him his quirks, how does he approach another kid. (This happened one day this school year, he refused to go to school the next day because he said it was too hard, he sat crying and wouldn't say why) It took him over half of recess to join another group of kids and interact with them.

How can such a small package wrap so much anxiety up inside himself?

Asperger's is not alone - Part 1 - Sensory Issues

HistoryBoy as you know has Asperger's, but he also has ADHD, sensory issues, horrible allergies, asthma, stomach and intestinal problems. I have heard from other parents that their children also have multiple issues, while not necessrily the same issues as HistoryBoy, Asperger's does not seem to travel alone. I would love to hear from more of you on this issue.

I first noticed HistoryBoy's sensory issues when he was about 18 months old (maybe a little younger) and when I would flush a toilet, especially out in a public restroom he would shriek and hold his ears like someone was hurting him. I started telling him to hold his ears before I flushed so he wouldn't freak out so badly, sometimes there is no avoiding a bathroom even as badly as you want to.

Also, at first people seemed to be a nice diversion for him to look at and then suddenly there were too many people, he needed to hide, he needed a dark place to go to. If you read my blog on May 3, "Calming with Music", I mentioned plopping HistoryBoy into the stroller, well this also worked here. Sometimes music would help calm him, once he was overwhelmed by people, sometimes not. More often than not, what I would have to do, is put my jacket over the stroller front so no light got in through the front (I started bringing a blanket after a while) so that I could get what I wanted to or needed to done. I know I could have gone home and waited until later but sometimes you NEED to get out of the house with a 2 - 3 year old and he was also learning if he acted up I took him home, I needed to establish a better pattern for myself and him. Sometimes I need to get out of the house with my 10 yr old and I wish I could throw him in a stroller with a blanket over him to soothe him! lol!

As he got a little older tags in clothing became a real issue (Thank god for tagless clothing!!) Instead of ripping out all the tags, I put tagless undershirts under all his tops, even T-shirts. This way I could still go through his closet when I needed to clean it out seasonally and get rid of everything by size without having to try to measure up this shirt to that shirt, so they still had size tags, YEAH! lol

I mentioned his need for clean hands on April 27, "Please Don't Let Me Get Dirty." He hated dirty hands. It is better now. Sometimes I even have to tell him to wash his hands after he has been playing outside like a "normal" 10 year old boy. To me HistoryBoy is my norm.

Sensory issues seems to be a huge part of Asperger's for HistoryBoy. Early clues for me that I didn't know to look for. Peditrician told me HistoryBoy just had very sensitive ears as did ENT when I took him at age 2 because of his bathroom freakouts. His issue with tags in clothing my mom said "I always hated tags in clothing. They always bother me, I rip them out" So I figured it wasn't unusual. Just because they don't bother me, doesn't mean it can't bug other people, right? I look back now and I can say yes I can all his issues now, but I don't know if I could have done anything differently back then. I did what I was supposed to do. I took him to the Dr, I followed up with the ENT. Unfortunately we needed more pieces to this puzzle.

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