Pain Assessment Scale Sucks

      The 1 - 10 pain scale is so hard to judge. Anyone else feel this way? It's completely subjective to each person. I exist is a 3 to 4 on a regular basis, which means, it's there but I can function. A 5 to 6 is where I need push myself to get through but it's ok, not ER level. 7 to 8 is where I am needing pain meds and contemplating ER. 9 to 10 is me at ER screaming or crying in pain and hoping there are meds that can help. 

     Unfortunately, I've realized my own scale is subjective.  I remember the last time I was in the hospital and nurse asked me pain level and I said 5, I told it was there but I was functioning.  She gave me meds and when she checked later I told her my pain level was about a 5. She asked didn't you get any relief and I realized that the way she and I looked at the pain and the pain scale were different. I was judging it based on my ability to handle it, she wanted me to judge it on its existence but since I exist, like I said, around 3 to 4 on a regular basis, it's hard to say how much worse it is unless it's really bad. If it's not my normal level, but I can push through, it's a 5 to 6 so even if it's better than it was, if it's not my norm, it's in that range.  

     I don't know if there is a better way to gauge pain from person to person, any ideas?

Lupus Still Sucks...

We all know Lupus sucks but it's really sucks when you realize that I am back at my pre-pandemic health, which means I pick up EVERYTHING. During the pandemic, I found that I could be "healthy" if I didn't have contact with people. I didn't come down with any contagious bugs for 2 years. I did get sick with pancreatitis and a sinus infection from my allergies but that is expected,  sort of... but that's another story... 

Historically,  I am sick a lot, as most people with Lupus are but it is *always* worse in the fall/winter. I used to fight to stay healthy for as long as I could because I found that if I got sick before Halloween,  I wouldn't be healthy again until April. I can't pick up a bug too early in the fall season otherwise my immune system doesn't have it in it to fight off any of the tougher bugs that come around once winter is in full swing. If I can "hold out" and not get sick until after Thanksgiving. I generally will be healthier that winter season... However,  this year, I am sick and have been sick since Halloween.  🤧 

I will say it may be kinda my fault I got sick since I haven't been as careful and wearing a mask in public, like I planned... but I've been relatively healthy (for someone with Lupus,  Fibro and EBV) so I thought I'd be ok. I went out to see a play on Friday before Halloween, and then we saw Rocky Horror on Saturday that same weekend. We had a lot of fun but a few days later, we (me, angus and historyboy) all came down with stomach bugs, which they got over much quicker. Angus threw up once and was better 2 days later. HistoryBoy only had the intestinal end of it and again was better in 2 days...

For me, that stomach bug triggered pancreatitis. Two weeks later, I was feeling a little better. I hadn't been out since I had gotten sick so I went with Angus to take HistoryBoy to eye doc and then we grabbed Starbucks on the way home. I managed to pick up a URI (upper respiratory infection) in that short trip which I had for a week before the guys picked it up from *me* AND they were only sick for a few days. The URI for me triggered pluerisy. 

Realize, at this point,  I am not completely over the pancreatitis, I'm still on a modified diet and have to be careful of what I eat but I'm getting better. The pluerisy was awful. I haven't had it in about 10 years.  Now I have to try to differentiate between yhe pain in my side from pancreatitis and the pain from pluerisy, as my doc wants updates on how in feeling. Then, as I was getting better from all of this, I've got the stupid URI back. 😭 The guys having gotten over the URI fairly quickly, shared those stupid germs back with me, and I am down with it again, stuffy head, headache, post nasal drip, stuffy ears and ear pain. It will probably be another week before it is gone. #LupusSucks 

I will close by saying that winter is the worst with Lupus, for me. Sadly I was at my healthiest during the pandemic when I had no contact with anyone. I didn't pick up any bugs. It was wonderful to an extent. I have never known being healthy like that since I was 15... I will say what we all know #LupusSucks

Thanks for listening 

Leave a comment or send me a message 

Trying to Get Healthy...

So I've been sick for quite a few weeks now... I didn't go to doc originally until it was day 5 or day 6 of being sick because I knew if it was a virus they wouldn't do anything other than what I could do for myself...

I had ear pain by time I went so I knew it wasnt just a virus anymore. URI and ear infection. Yay me. Given 5 days of abx. They  didn't work well enough so I end up sicker and back at doc now with URI still running rampant and infection in my other ear and an awful cough... 

Given stronger abx and steroids (medrol dose pack) this time. I didn't notice any impact first day. I was hoping steroids would jump start my energy a little, day 2 still not feeling it, day 3 I wake up with a little energy, enough that I load dishwasher and start it, start a load of laundry AND change sheets on my bed to get rid of germs. Then I ran out of steam and crashed... Day 4 I woke up tired. I can feel that the daily dose of steroids is decreasing as the energy level isn't what it was but since I was feeling a little better, hubby decided to take me out to lunch since I haven't been out of the house (except for Doc appts and pharmacy pickups) and he's is going on travel for 3 weeks, so he wanted a date day. I enjoyed our lunch (PS: Nan Xiang Xiao Long Bao in Cherry Hill, NJ is AWESOME, I highly recommend it) but I was so wiped when I got home that I couldn't sleep, my body was so achy, I couldn't get comfortable and as it was too early to take my nighttime meds so I have just rested in bed until now when I can take my meds and get the rest my body so desperately needs right now. 🙏🙏 for a restful, restorative sleep... 

The Day After Super Bowl 2023

#LupusSucks we know that, but today I feel it. I didn't do anything extreme yesterday. We ended up staying home because hubby is sick but I stayed up "late" not in my bed to watch #SuperBowl2023. If I am up "late," I am usually in my bed watching the tv or reading there so my body is screaming at me that I shouldn't get out of bed today. I didn't even want to get out of bed to use bathroom (I did), but I haven't made it to kitchen yet to get something to eat and my body wants that too... 

Not to be left out, my Fibro and Reynauds is joining in. My ribcage doesn't even want to be touching the bed that my body so desperately wants to stay laying down in and my hands cannot get warm. I am going to be wearing gloves today I think... a hot bath may help but right now that would take too much energy to accomplish... could be my EBV adding to this fun mix as well. It's going to a a fun day... 

I have no "spoons" to even begin today, let alone get through it. I know I haven't had much in reserves at all lately but this is the worst it has been in a while. Sadly, I can't even turn the TV on right now as I do not see the remote and do not have the energy to look for it. I am trying to get some energy to be able to get something to eat in a little but it may take longer than I think...

As I said #LupusSucks but #FibroSucks #ReynaudsSucks and #EBVSucks too. 

#LifeWithLupus 

#LupusAwareness

 #NotAllDisabilitiesAreVisible

Running on Empty

Tiredness is ruling my life lately, and it is hard to determine what is contributing. Is it my Lupus? Fibro? EBV? Anemia? Or a combo of any of the above? 

Either way, it sucks. It mean that I have less energy to do the things I normally can. It means folding a load of laundry leaves me wiped out as does taking a shower or bath. Forget errands where I have to leave the house, I'll be done in for the day. 

Ask HistoryBoy, he had an appointment for a checkup that I took him to and as soon as we got home I went to bed. I'm used to not being able to do multiple things outside the house but not being able to complete small chores without exhausting myself is a new one for me. 

I made dinner the other day, and it completely did me in. I had to get HistoryBoy to finish it for me because i needed to sit down. After sitting for a few min, I realized that I needed to lay down. I ended up sleeping 2 hours. HistoryBoy and Angus ate without me. I told them to but it means I didn't get to enjoy the fruits of my labor. There weren't any leftovers either. Lol

Do you have days like this? My days have been running into weeks like these. The exhaustion can be overwhelming but I try to not let it get to me. I won't let my lupus (and other ailments) defeat me. I am a fighter and will continue fighting.  

Pushing Myself

I've mentioned before how I try not to push myself too much because there are real life consequences to my health when I do but...

Yesterday, I did some straightening, and a little exercise and wiped myself out. I crashed and fell asleep but I was woken up several times, once by phone, once by our dogs to be let outside so my nap wasn't as long or as restful as I needed it to be, especially given as we had plans for the evening. 

When I got up from my nap, my headache was only marginally better, but it was enough better that I thought I would be okay... That is probably a lie... I could feel I was pushing myself BUT HistoryBoy was performing and I wasn't going to miss it. (I haven't mentioned his performing on the blog before but I'll write a post about it later to update you). HistoryBoy can tell I am not 100% and told me I could stay home and Angus would take care of everything, but the only performances I've missed is when I've been on the hospital and I don't want to miss this one.  

Well, maybe I should have, but it's too late now to go back and change. So what happened? On my way to the event, I got car sick. NOTE: It's was only a 10 minute car ride, but I was so nauseous when I got there, I had to get out of the car and breathe fresh air hoping I wouldn't actually throw up. I got a water to drink, and sat down and started to feel a little better but as time went on, that headache tightened like a screw on my head, and my neck muscles kept getting tighter and tighter, until I knew it wasn't a regular headache anymore but a migraine. I lasted through HistoryBoy's performance but I had to leave after, which I felt bad about but couldn't help. I needed to lay down and I was really hoping not to get sick. 

We went home and I went right to bed. HistoryBoy got me my migraine meds, a glass of water and an ice pack. I just closed my eyes, hoping the pain and nausea would subside. It got a little better, enough that I felt could enough to get up and use bathroom and then decided to take a bath and get ready for bed. Well bath felt amazing at first. My still muscles started to relax and I was simply resting with my eyes closed when I felt my stomach lurch. I'm looking around the bathroom, and I knew I didn't have energy or time to jump out so I grabbed waste basket and called for Angus... 

After my stomach calmed, Angus helped me into pajamas and back into bed and as I lay here now, just 10 or so hours later, my body still feels wiped out. My head, while not quite a headache, has that after migraine feeling which means I can't push myself an inch today or I will be very ill, and my ears are ringing, which happens to me with/after a migraine. 

Was it worth it? Would I do it again? Yes, I got to see HistoryBoy perform, which makes me happy and so proud, but I'm done in now probably for several days while my body catches up. #LupusSucks 

What Is Normal?

Someone asked me recently what is my normal? ... and in trying to figure it out, I realized that over 2/3 of my life at this point has been living with Lupus. 

That isn't a complaint; it is just a statement of fact. I was 15 when I was diagnosed with Lupus. I'm 46 now. I don't really remember what it was like to not have Lupus, and that's not saying I don't remember my childhood. I do, but I don't remember the feeling of being healthy. I did well managing my lupus for a lot of years, I had more ups than downs until about 20 years ago. And while I wouldn't trade my son for anything, I've never been as healthy since as I was before I had him. I sort of think of it as the sands of an hourglass. You don't notice the loss of a few grains of sand over a short period of time, but the cumulative effect when I look back is very noticeable. 

I'm not sure what my normal is anymore. If I figure it out, I'll let you know.

PS: This is my first post on about 5 years. I'm sorry for disappearing but life... and my health has been very up and down so the blog slipped into the background.  I will be posting more often going forward,  hopefully.  

It's 2017...

History Boy is 16. So I have to balance what I write here, with his privacy.  Some things that I find humerous may not translate well if his friends were to find my blog. So, while this blog is meant to be helpful to others and an outlet for me as well, it is also a place to my History Boy to feel safe and unjudged. I will do my best to keep the help streaming, I hope you understand.

-Teena
Teenahope@gmail.com 

The last time I posted was over a year ago.  Sorry to disappear for so long but I got very sick shortly thereafter, ended up in hospital for two week in January 2015.  I had gastritis and colitis which somehow led to me getting an abscess in my abdomen. Don't ask me how.. The docs couldn't agree. It was this, it was that... I came home with a drain out my hip,  It looked kinda like the end of a turkey baster and I had to empty every day and measure and make sure it wasn't getting infected .  (ie that means the fluid wasn't bloody) It was a gross process that took about two weeks to finally resolve itself.  Aren't you glad you found all this out? Lol. It took quite a while to come back from that and HistoryBoy was sick in the mix as well.  More about all of that later but I just wanted to post a short Hello.

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

Thanksgiving Thoughts

Blogging has made me feel like I am back to being myself again.  I know I will have days where I don't write, and I know you will understand because you also have a life and understand how overwhelming life can be at times.  

As always, I am trying to get healthy and stay that way.  I still haven't mastered that skill. I will feel ok for maybe a day, so I try to get a few things done.  Vacuum or do some laundry.  It wipes me out. So a lot of days these things done get done.  I am grateful that Angus and HistoryBoy are helpful (when they want to be LOL)  HistoryBoy is at an age where it could be a fight to get anything done, yet he if I ask he simply does the chore for me, whether it is simply carrying a load of laundry from one room to another for me because I can't lift it, or taking out the garbage.  He grumbles every once in a while, but he still does it and doesn't truly give me a hard time. 

I am grateful for this, especially at this time of year, when the cold is beginning to feel like it is seeping into my bones and take root.  I can't get warm and stay warm, and my hands simply hurt, just because its cold. It might be 68 degrees inside with the heat on, but some days I am still wearing gloves inside.  If it is 60 degrees outside I need gloves in my pocket because my hands will start hurting if I am outdoors too long. 

Even though I have these problems, I have Angus and HistoryBoy, who truly want what is best for me, even if some days they don't understand why I am not feeling well, or how I can go from feeling ok one moment to miserable the next.  When I need help, they do their best to give me what I need, whether it's time to lie down and simply leaving me be, or carrying the things for me that I can't, or taking care of the things that I am simply not up to. I don't know where I would be without them.

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

Homework Issues

Homework is one of those things that HistoryBoy LOVES to procrastinate over. He will procrastinate until almost bedtime even though I have been fighting him all afternoon to do it. Then suddenly at bedtime he wants to do his homework.  Oh yay, now I get to stay up when I want to go to bed. We have taken away events with friends, videos games, toys. Nothing seems to help.

The child who used to love to do his homework right after school is gone. Replaced by this miserable procrastinating teenager who thinks it is fun to drive his mother nuts.  I have sent him to bed early because I am frustrated with it.  He then cries that I am being mean, he wants to do his homework now and I'm not letting him.  Save me from drama!

Part of the problem is that he views school as an interruption in his learning time, not as the time he should be learning. He thinks he learns by watching documentaries and watching videos. I know he does, but he needs to understand the value of school, and remember how much he used to love school.  

I know the past few years have been rough for him but I don't want him to fall through the cracks and be just a statistic.  He's worked too hard on getting himself this far. He's finally finding himself but expressing it in all the wrong ways. I am not giving up obviously but I am struggling to help him, balance what he needs with what he wants.  Together we will survive this, I hope.

REBLOG - WAY too Literal

from 8/24/11

We all know that our Aspies can be literal. HistoryBoy is very much so but it has become less and less noticeable. Maybe I am just used to it, or maybe it is because he knows he is too literal and has been using his literalness for humor with plays on words and so forth. I am happy about this because from I have read and learned from others, for most Aspies, a sense of humor is non existent but back to my point.

(HistoryBoy LOVED this.  He said it made perfect sense!)

As I stated, HistoryBoy is very literal, I can't use colloquialisms. They just make him go huh? most times. I remember arguing with my brother one time and telling him to take his head out of his butt. HistoryBoy looks at my brother then looks at me, looks back at my brother then tells me "Mom, his head isn't up his butt. How would he get his head up his butt anyway? It's too big." I think we all laughed over that one.

(When HistoryBoy saw this scene recently, he ACTUALLY got the joke but he is 14 now, this post that is being reblogged was originally written in 2011)

Another time he wasn't paying attention to me, and I called him a space cadet. He asked me if that was an astronaut. I said not exactly. LOL

I told him he was giving me grey hair. Honestly I only have about a dozen or so grey hairs but I attribute each and every one of them to him. And he kept asking me how can he cause my hair to turn color, and he wanted to know what he has to do to make it change color. I am not sure if he wanted to understand the phenomenon or see it in action.

(I could see HistoryBoy doing this)

I have been noticing him literalness less and less though. However yesterday we were at a get together and a made a comment. He had a flying monkey stuffed toy. And I made the comment I might not be quoting it exactly right (from an 80s or 90s movie) "and monkeys might fly out my butt" HistoryBoy stared at my butt, looks at his toy monkey and says what? I laugh and repeat what I said. He looks at me again confused, "How is that even possible?" I burst out laughing.

I love my son, he makes my life interesting.

The Hope and Dream of HistoryBoy Part 2

HistoryBoy amazes me. He is sweet, smart and talented.  He wants to sing and act when he grows up.  I told him that I had nothing against that but I think he should have a back-up just in case it doesn't work out the way he hopes.

We discussed what he likes, Legos, Transformers, Star Wars, and History.  He thinks working for Lego would be awesome.  He has some great ideas for new Legos.  I told him it takes more than being good with Legos to get a job at Lego, you need a degree in whatever it is the position you want requires. He told me he likes to design things but he doesn't know if he wants to be an engineer.  I told him that that is fine.  He doesn't have to be.




I asked him what he liked and thought he would like to do.  He told me.  "I really like History, mom.  Do you think I could be a History teacher?"  I told him that that was a great idea.  He loves learning more and more about history, and he loves to share his knowledge.  I could see him doing very well.

When I mentioned this to someone, they thought it would not work because of his tendency to run on about a subject when he gets excited about it. I am not worried about that.  I have seen my son with other children, especially those younger than him, and others who are like him.  He is very empathetic.  He slows down and explains, and wants to help. He doesn't want anyone to feel left out or left behind. This is a great trait for a teacher.  He will do his best to not let his students down.  He will also be an enthusiastic teacher.  He LOVES History and LOVES sharing all that knowledge.  


Now this isn't his final decision.  He is only in 8th grade, but we've started the journey.  We begun a discussion and he didn't freak out.  He thought about it and figured out something he liked to do within the structure of what he knows.  I am proud of him.  I don't know that he won't change his mind before he's through but I'm proud that he took the first step towards his future.

REBLOG: Why Blog?

Someone asked me, why blog?  Why do you blog if no one reads it?

There are two answers to this...

One, because I have 13 followers for the blog itself and 100+ member in the Overcoming being Overwhelmed group on Facebook. So while I guess I am not the most popular blog out there, I get read (even if its only by mostly my family and friends...Thank you btw!).

Two, I've been writing since I was in grade school. Poetry, short stories, diaries... It is something I need to do.  Sometimes it is just to clear my head.  Other times I simply have something I want to say or a funny story to share. When HistoryBoy was little, I wrote short stories for him about my childhood and my dog Ginger, most of which actually featured my little brother, Engineer.  (Maybe I should share those stories. LOL).

The long and the short of is I like to write, sometimes LOVE it, and sometimes simply have to. Without this particular media, I would be simply publishing my ideas in my journal possibly sharing with some friends. This allows me to share with a lot more people, and if anyone gets something out of it, if I help even one person, then that's AWESOME.

The Hopes and Dreams of HistoryBoy Part 1

We have done a lot of talking HistoryBoy and I.  He is so smart yet can be so afraid of the world because of its reaction to him.  He gets over excited when he has something he wants to say and he words just tumble out.  He can't stop his flow of words once he gets started and not everyone is ok with that.


We've been talking lately about what he wants to do when he grows up because while college is over 4 years away, he needs to be thinking about a direction.  Not that anything is set in stone or has to be but we have to plan now so that he is prepared when the time comes, no surprises. He still panics from time to time when I mention the fact he will have to have a life plan and move out once he is an adult.  (I am not kicking him out but I want him to know he needs to have a plan and a goal)


HistoryBoy, as I mentioned in my blog the other day, has found his niche.  He is a gifted vocalist, and no that is not just me being proud mama (although I am).  He has been bugging me for years to do our local theater, but we always had my get healthy trips to Florida in the summer so it wasn't possible.  Well this summer, they were performing Camp Rock.  He begged me to please let him to it.  

So we did not go to Florida this summer, and HistoryBoy not only auditioned, HE GOT THE LEAD in the play.  My HistoryBoy, the quiet, inside himself kid, opened himself up and showed what he was made of.  He went from the kid who in the beginning of summer didn't talk and sat by himself with his toys or ipad to walking in and kids saying Hi HistoryBoy and his answering back and him sitting and chatting with them before rehearsals began for the day. IT WAS AMAZING!  I am so proud of him!  And those of you who know us, you know how truly amazing this really has been.  I am hoping for nothing but good things now! 

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

REBLOG (from 4/26/11)

Yesterday’s blog (REBLOG 11/12/14)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

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