A Year of My Life With Rare Diseases in Photographs

{This story is a photo series. I’m not sure how to submit this? My full photo series is published at http://tinysalutations.blogspot.com/2017/05/a-year-of-living-with-rare-diseases-in.html. I’m not sure if they will all come through in the copy/paste here. Thank you!!}

A Year of Living with Rare Diseases in Photographs

May is Lupus Awareness Month. Lupus is one of the many rare diseases that I struggle with everyday*. It is often hard for others to see what my life looks like. It is so far removed from a typical life of a twenty-something young mother- or for that matter from the typical life of healthy individuals of any stage of life- that my words don’t often convey well enough the truth. And I’ve found that without being able to understand at all someone else’s truth, we tend to dismiss their lives as a whole. So over the past year, from last May to this, I’ve tried to collect photos, mostly self-portraits, that show some of the truth of this life. There will, of course, still remain something intangible. It is difficult to catch frustration, pain, desperation, poverty, surrender, gratitude, the feeling of being completely out of control, the way disease seems to infiltrate every aspect of life… but I’ve done my best to capture little pieces of it here.

I suppose it may be helpful for those who didn’t know me prior to being sick, to know how my life looked then. I was fit. I went hiking maybe 100 miles or so in a month and worked full time while in school full time until getting my Master’s degree in marine biology (and then subsequently getting sick). I volunteered quite a lot and did everything in my power to minimize my impact on the planet. Now that my life has changed, there is a new me and new choices I must make, which I don’t always like. No matter how I feel about it, this is how my life is and how my life will be, and I try my best to make the best of it. And sometimes, it can be pretty awesome too.

*I have been diagnosed with lupus, mixed connective tissue disease, antiphospholipid antibody syndrome, myasthenia gravis (which diagnosis was actually called into question during this year), fibromyalgia, and- diagnosed during this year- hyperadrenergic postrual orthostatic tachycardic syndrome and baroreflex failure. I have nerve, muscle, and joint damage, resulting in loss of function of some of my basic systems. This also led to my surprising very premature and dangerous delivery (before which I had thought I was healthy). Not all with lupus will have a journey like mine!! Everyone is different (especially since I have several other diseases) and much can be done with proper care as well.

Being sick has made me require a wheelchair. Unfortunately, so much of the world is inaccessible, especially so much of the natural world (let’s not pave it all over either!). I am often just on the outside of experiences, such as taking my son to the beach.My husband, knowing that I am not content with the perimeter, particularly of nature, has dragged me in my wheelchair to many an inaccessible place. The wonder of nature has thus far been stronger than the physical pain and shame/anger at myself at needing to be dragged across the beach.Here my husband is trying to transfer me to the bench (that’s a heart monitor, not a purse). My husband has had to fill the role of caregiver as well, and not just to me, but to my disabled son as well. I have lost a huge amount of independence, which is maddening. It is also maddening that my husband has lost some of his independence as well by becoming a caregiver and that he shouldn’t have to do that at 30 ears old.  {You can see our wedding photo behind him- in sickness and in health, right?}Being sick is painful. My joints often hurt too badly to be used and several times a month hurt beyond being able to respond to any kind of treatment, leaving me in agony, and at times in tears. I have round-the-clock pain medications, but illness is painful.There are mountains of paperwork required when you are sick and/or disabled. Between keeping up with medical insurance, medical and pharmacy bills, many government programs, medical documents and records….. the amount of paperwork is something I couldn’t have fathomed. The other part that I couldn’t have fathomed is the poverty. I somehow expected that in this developed country, we take care of our sick and disabled, but it is a much more desperate reality. You can have your short term survival or your long term survival, but it is not easy to have both.I wear a BiPAP ST to sleep. I breathes for me, giving me a pressure to breathe both in and out, since my respiratory system is no longer able to breathe through the night on my own or keep carbon dioxide from building up in my system.

I have vomited out of the side of the car way too many times to count. My body has become too weak to hold it together through the hard work of vomiting, and so I often end up injuring myself in process now, such as tearing tendons in my shoulder or popping dozens of blood vessels throughout my face and eyes.  To keep my many rare diseases under control, many prescription medications are needed. I take a over a dozen medications. Each one is thought out with my medical team (no I don’t want to try any supplements).A device that helps to open my lungs when my breathing is worse.Sometimes I get too sick to participate in the world for periods of time. I feel like I can push through a lot of the time, but sometimes I simply get too sick and get stuck in bed for a while.….But I don’t spend all of my time in bed alone! When I’m not well enough to participate in the world, my family usually keeps me company, which is probably who I would’ve hung out with that day anyways. So I’m thankful to have awesome company.I have spent many hours in the comfortable chairs of the Infusion Clinic at the university hospital. Once a month, I spend a day waiting while immunosuppressive drugs are slowly infused into my body.  Chemotherapy and other immunosuppressive drugs are often used to control autoimmune diseases, especially those whose disease are more aggressive.When I was pregnant, I imagined all of the things I would do with my child, and pretty much all of them involved traipsing through nature, exploring. The way my motherhood has actually played out has been different, and although we have found many things to enjoy together, I would love much more to be able to run in the waves with him and to share with him all of the secrets of the natural world.The muscles in my bladder are nonfunctional, which requires me to use catheters. The amount of medical equipment required to keep someone that’s seriously ill afloat is insane. And every time I need to leave the house, I feel like I am bringing the house with me. Our calendar is filled with doctors and medical tests and therapies. Between my son and I, we usually have at least one appointment per day. We have on average 40 appointments (including therapies) per month. The amount of medical care alone is often exhausting.We spend so many hours at doctors offices and hospitals. We usually make a weekly trip to either the university hospital for my care or the Children’s hospital for my son’s care- either trip consuming an entire -long- day. Many, many hours have been spent at these hospitals.Countless hours are spent in doctor’s visits- a couple every week.My son is used to the long car rides back and forth to the city to get to the only hospitals in this region of the U.S. capable of treating us. (Sometimes he still gets tired out)We have spent so much time in hospitals, in both planned visits and emergencies, that it feels familiar.Inclusion & Accessibility- Here is an example of something that I would have loved to be included in, crawling through a Jefferies Tube with my family (Star Trek), but was not something that I could physically access.Inclusion & Accessibility- This was something I could physically access. I think something that is very difficult to understand though, is that even when you can access something, it is rare to be fully included in the way an able bodied person is. Although I am grateful to be included, it is often on the perimeter or in an altered way, not fully included. I am grateful to have been able to participate in this photo with my family (and Klingons), but I was off the set and difficult to frame into the photo, difficult to interact- on the perimeter. After a while a life on the perimeter, an adjusted life, wears on you a bit. (This is just one of many examples- we had a ton of fun at this event!)I have had so many vials of blood taken for testing. Every month I get several tubes of blood taken as routine testing, then add on any extra vials for other concerns, other testing, or retesting when my blood work comes back concerning. I used to be afraid of needles (fainting afraid), but this consistent exposure has completely cured me of this fear.Complex and/or rare diseases come with a lot of testing and, as pictured above, a lot of medical imaging. In addition to diagnostic imaging, I often get checked for pneumonia, blood clots, and joint/bone damage.Neurological testing is often needed to assess the status of my neurological diseases. Urinalysis is a common test to accompany blood work, especially for lupus patients, and is done often. Sometimes urine even has to be collected over 24 hours, which is always inconvenient.Countless amounts of testing are needed, even when diagnoses are not being made. This sleep study was to find better settings for my BiPAP to ensure that I am breathing well and getting rid of as much carbon dioxide as possible.Due to my son being born premature and having autism, he requires several weekly therapies.Due to my illness (which didn’t start until pregnancy), my son was born premature at only one pound. He had to be intubated so long after birth that he now has lung disease and is medically complex himself. This photo is from an airway surgery he had this past year.My son’s lung disease makes any respiratory virus dangerous. My husband and I have basically become his EMTs as well as all the many other hats we wear.My son is medically complex and his life is just as full of testing and doctors.Due to my son’s autism, our lives are always a little out of hand. And his needs have compounded with mine to require a lot of caregiving, which is all on the shoulders of my husband. His needs have shaped his homeschooling, but his strengths and interests have shaped his homeschooling just as much.Lupus causes me to be very sensitive to sunlight, which means that my skin needs to be covered when we go out.It is hard to balance between accepting my limits and pushing them. Lupus often causes fevers, which I could live with on  any given day.I’m not sure, had I remained well, that I would’ve found such happiness in photography. It is one of the things I am most thankful for being given in my illness.Some relationships have suffered since becoming sick, but some relationships have grown even stronger. There is nothing like feeling like someone understands you and accepts you for who you are, illness and all. And seeing my son who has his own illness and disabilities accepted is all I could hope for in the world. I feel like there are people there for me in the world in a way that I never experienced before becoming sick.

Full Source: disableddatingclub.com

To the Psychiatrist Who Told Me I Should ‘Find God’

This is my latest story from my blog. (https://thenutfactory.wordpress.com/2017/01/09/dear-psychiatrist/)
Thanks 🙂

Dear Psychiatrist,

You were the very first psychiatrist I saw. I was young and in the early stages of my diagnosis.  Just getting in to see you was no mean feat. Despite having a referral from my GP I still had to endure twenty questions from your receptionist and many phone calls before she actually made me an appointment to see you.

You gave the impression that I was wasting your time and diagnosed me within ten minutes of meeting me. I’m really not sure how this is possible but you did it and prescribed me some medication.

During our conversation you told me I should find God and get better for Him. This is probably some of the worst advice I’ve ever received. I personally don’t have a faith. I don’t believe in God. While I fully respect your faith and right to follow your religion, I don’t think pushing it onto others is a good idea. You also need to respect my and others rights to not have a faith or follow a religion.

There are so many issues with this advice it’s hard to know where to start. Even if I did follow a particular religion, prayer is not going to make me better. While I acknowledge that prayer is helpful and therapeutic for some it doesn’t solve the problem. An over weight person cannot pray themselves thin, a diabetic person cannot pray their insulin to start working properly. Getting better takes work, medication, time, therapy, effort.

Having faith in God may be perfect motivation for some people to get better. But not everyone. Even if a person has faith it may still not be enough to help them get better. Each individual will have their own reasons for wanting to get better. Perhaps next time you should have a more in depth conversation with your patients to find out what they are. It could be their children, their spouse, their friends, their dog, any number of things. Maybe they don’t have any reasons to get better. Help them find some without being so judgemental and be open to each individuals unique set of circumstances, beliefs, culture and identity.

From your former patient.

Full Source: disableddatingclub.com

4 Things to Keep in Mind If You’re a Teenager With Chronic Pain

Having Chronic pain is bad enough, let alone trying to be a semi-normal teenager.  People try to tell you the things you can and cannot do, they try to discourage you, or encourage you to do something you know you cannot do or something that will put your health at risk.
They demote your pain, and how bad it gets.  They demote how your symptoms can be set off by the tiniest of things and skyrocketing as fast as you can say, “I don’t feel well.”.
Everyone wants you to be a normal teenager so badly, that they try to will it into happening, but it doesn’t.  I have had my fair share of people blowing up at me in frustration saying they just want to get better and be able to be a normal teenager.  And you probably have to.
But, guess what! We are NOT NORMAL TEENAGERS.  No matter how badly we want to be.  Trust me, I get it.  You try your best to live your life, but you are just going to have to live it differently than everyone else, and that’s okay.  You do what you have to do.  Plus, who wants to be normal anyway? Normals boring. 😉

Let me tell you one very important piece of advice that took me FOREVER to learn.
You do NOT have ANYTHING to prove.  You do your best.  That’s it.
If people push you, you push right back.  And eventually they will learn and observe that you are doing your best, and taking it one day at a time.
The expectations people have set for me are crazy and incredibly unrealistic. They want you to be able to function as a normal teenager so badly, that they set their expectations that much higher, and you feel like you have to meet or even exceed them in order to prove something.

Once I stopped trying so hard to live up to the expectations people have set for me that are not realistic, and just started trying to reach my own expectations and goals, I started enjoy life a LOT more.

2.  Be realistic about what you body can handle.  I would rather not do that one thing today, then not be able to do anything for the next few days, or risk  throwing myself into a flare for weeks at a time. You never have to push yourself past what you KNOW you can handle just to make a point, or to be like everyone else.  I know it’s tempting, and frustrating.  But, if you do that one thing that will push you too far today, you most likely won’t get to do anything the next day.  Do as much as you can, and then rest.
It’s good to push yourself every now and then, but don’t dive right in and go a mile when you should have gone 50 ft.
I am not saying I have perfected this myself, I end end up going  the mile or more sometimes, and paying the price.  But, I have found myself getting out there and having fun with my friends a lot more by slowly upping the things I do.

3. Tell your friends, or at least your closest friends.  They need to be aware just in case of an emergency, let them know what could happen, and walk through the steps of what to do to help you in that situation.  Honestly, I was friends with my best friend through the entire process of my health deteriorating.  And I couldn’t be more thankful to have her in my life to talk to on the hard days, be understanding when I have cancel on our plans, and I can’t even count the amount of times she has stayed in with me and watched movies instead of going out and doing that fun thing we had planned because I wasn’t feeling well.
I know it’s scary to tell people, and if they can’t handle it, then you don’t need them in your life anyway.

4. Don’t let doctors talk down to you.  Don’t let them push you around, or tell you how YOU are feeling.  No, only YOU know how YOU are feeling.  They might know how to help, but ultimately, it’s your body, not theirs.  If you don’t like the doctor and there is another one available, try that other doctor and see how that one works out.  It took me 3 years to perfect my team of 8 doctors that respect me, listen, understand (or at least try to), and ask how I feel about the treatment plan, or gives me options to choose by how I am feeling.

Honestly, everyone’s list is going to be different.  But, it never hurts to getting a little spark going to help recognize what your list is so you can keep it in mind.

Full Source: disableddatingclub.com

My Top 10 Must-Haves When Packing for a Hospital Stay

It is laughable to look back at the ridiculous amount of things I packed for my first surgery. Games, coloring books, knitting projects, books….the list was enough to fill the trunk and then some. Of course I needed all of those things. How was I going to pass the time during my estimated 4-7 days of recovery? When it came down to it I had no mental focus to partake in any of the entertainment I packed. I played the in-room spa music all day and kept as zen of a room as possible. My days and nights were filled with wonderful visitors, laps around the hallway, constant interruptions from doctors and nurses, eating meals and lots of sleeping.

As I prepare for my second hospitalization I plan to learn from my mistakes and pack only the must-haves. Here is my top 10 list:

  1. Chapstick and lotion: This was the best advice from my Aunt N. Hospitals are super dry and these items will help remedy that and make you feel a bit more human.
  2. Toiletries: Toothbrush, toothpaste, floss, soap for the shower, deodorant, face wash…It feels so much better to bring your favorite products from home. Nothing beats a good warm shower when you are laying in bed all day.
  3. Flip-flops: You’ll need to get up and walk several times a day. You won’t be bending down and lacing up your tennis shoes. Bring flip-flops to walk around in. You might also want to use them in the shower.
  4. PJs, bathrobe, underwear, warm socks: You can certainly get away with just wearing your hospital gown the whole time. By the second or third day I changed into my own PJs. It felt really good to put on “real” clothes. I went to Target and bought some super comfortable PJ sets. You’ll want to bring something that is very loose fitting and has an elastic waist so it easily fits over your IV’s and doesn’t put pressure on your abdomen.
  5. Pillow*: The hospital pillows are really terrible. Bring your own for added comfort.
  6. Loving friend or family member to sleep in your room with you: My husband slept in my room for the duration of my stay. They had a big chair that pulled out into a cot for him. It is so helpful to have someone there to be your advocate at all hours of the day and night. He was always there to go get a nurse if I needed something, to speak up and ask questions, and to be an all around good companion. *Make sure to bring a pillow and a blanket for your guest if you are lucky enough to have someone to join you.
  7. iPad or laptop: You’ll need this to keep up with your blog 🙂 and potentially watch Netflix if you have enough brain power.
  8. Heating Pad: My muscles were very sore from the hospital bed. There was also an immense amount of pain in my shoulders associated with leftover air from the laparoscopic surgery. A heating pad can help to alleviate some of that pain and relax the muscles.
  9. Food for special diets: It’s ironic and almost laughable how terrible hospital food is — not only the taste but the nutritional value. Find out ahead of time if there is a microwave and/or fridge on your floor for your personal use. Given that you are on a low-residue diet post-colectomy chicken soup may become your new best-friend. My mom made homemade soup ahead of time and froze it in individual servings. We brought a pyrex bowl and defrosted it in the microwave for me to eat. This was way better than eating the Kosher sodium soup available from the hospital menu. You will also be expected to drink a lot of liquid throughout the day. You might get sick of water and want to spice things up. I had friend’s bring me Honest Tea and lemonade to keep things interesting for my tastebuds.
  10. Clothes for the trip back home: You’ll want a clean pair of clothes to go home in. Remember you’ll still want to be wearing loose fitting elastic clothing for several weeks post surgery.

Full Source: disableddatingclub.com

How Audiobooks and Music Help Me Quiet the Thoughts in My Brain

No, I don’t mean I hear voices… well I do, but its my voice. Let me explain.I
don’t know if this effects me because I have Aspergers/autism, add or just because its me. But, my head, when I think about it as my consciousness/soul, not a hollow bone balloon full of my brain, ish, sorry, is never quiet. Never.
Most of the time it/I keep up a constant monologue, a constant quiet commentary on what is happening, what should I do, is it time to eat, and what did that person mean when they said that thing the other day, with interjections like “how can the universe be infinite anyway?”. It’s kind of hard focusing on everyday things, like say cooking, when your brain is doing that, should I put the water on first, chop the vegetables or did I do something wrong at the grocery store?
Other times I get a song stuck, and I’m not sure this is the same thing as when “other” people get this. Imagine an old LP record, with a scratch in it, so you get one sentence or snippet of the lyrics over and over, with the melody hopping from the end of the section to the beginning, just like a scratched  LP, you can’t get out of that same loop, then imagine it on a very loud volume… like it’s hard to concentrate and hear your thoughts loud. Quite annoying. It takes great concentration to block that out.
And sometimes it decides to drag up things that makes me feel bad, putting myself down, and really concentrating on the bad stuff in life. “It”, what else can I call it?,  especially likes to do this when it’s time to sleep.
It did this a lot when I was little, I had a list of embarrassing or sad moments that it went through over and over again, and I was to young to understand that these things were not really embarrassing or even my fault, and nothing to feel bad about at all.
A positive thing about this, if you can call it that, is that it/I can totally focus on a project I’m working on and solving all the difficult problems or making it way better, it likes to do this at night too, thanks. 😉
Sometimes you just have to give up on sleep, get up, make a cup of tea and start taking notes.
But I have found ways around this problem, that I didn’t really see as a problem until I read about a mother whose daughter really suffered from this and was trying out different medication to deal with it, I just thought of it as “the way things were”.
I usually wear a pair of headphones, with an audiobook or music playing, but I have noticed that it helps to just put them on, because I sometimes forget to start a book or the music. Funny.It took some time to find a pair of headphones that I could wear for so many hours each day without hurting, and I must say that Bose is superior in both comfort and sound, and if you can afford a pair of active noise canceling ones, they are heaven.
I first tried a pair on in a busy electronics store, I stood facing the wall with the display, I put them on and flicked the switch, and the whole store just disappeared. I just stood there with my eyes closed and enjoyed the silence, yes, I got silence, I didn’t even try with the music on, lets just say I got a pair.
At night I wear a pair of Sleepphones, it’s a headband of soft fleece with super thin speakers inside, and you can comfortably rest your ear on the pillow with them on. I do recommend the cordless ones, it’s a bit disconcerting to wake up with a cord wrapped around your neck (not that it ever was dangerous), and the cord tended to break too. I prefer to drift of to a book at night. I don’t really need to listen through headphones though, but then my husband doesn’t have to hear snippets of a book every night.
The sounds/monologue is not always a problem though, often it is in sync with what I am doing and helps me work out problems and how to go about stuff, then I have to turn the book or music off and listen and be “one with my head”, and when I have finished thinking and is back to doing things that doesent need my brain that much I put the book/music back on again. 🙂

Full Source: disableddatingclub.com

‘Mommy Therapy’ With My Son on the Autism Spectrum

Like many autistic kids, my son  has poor fine motor skills and it affects his everyday life a great deal. Getting into occupational therapy has been nothing short of a feat. You first need to almost invariable stand by in a 3-6 month waiting list. Once you get in, you get an hour a week and if your stars are all aligned right, maybe twice a week. Then comes the insurance which , in most cases, believes my child does not really need this therapy and if I use all the powers of the universe to convince them that he does, I get covered for maybe 12-15 sessions a year. So , in between the waiting , the long gaps between sessions, the power play with insurance and the rest, I was left with a lot of time on my hand that I decided to utilize for therapies that we could do at home.
There are 100s of articles over the internet, so why another one you ask?  As a mom, I give a lot of weight to another mom’s personal experience. It has a perspective that I find missing otherwise. So, in this article what you will find is a list of activities that have worked for my son,  activities with which I’ve seen real success and those that are easy to setup and fun to do.
With my son I’ve always noticed that if there is a function attached to an activity, he does better . He can then make sense of why he is being made to do something so it helps to have a purpose . Following are some of the activities we had success with:
Lacing beads :

<image name – lacing beads>


What you need– (option 1) pipe cleaner, cheerios  (option 2) play doh, shoe lace
The activity – This is one of the most common OT activity. It helps with pincer grasp and hand eye co-ordination. All you need to do is help your child push cheerios onto a pipe cleaner. Several websites suggested sticking raw spaghetti pasta onto balls of play dough but it’s easy to break the pasta if you have a child who wants to fiddle with it first. Pipe cleaners work better. Once my son mastered this, we moved on to a more challenging lacing exercise. I made beads out of play dough – roll grape sized play dough balls and poke holes in them with a skewer. Let them dry overnight and your beads are ready. I used shoe lace with a knot tied at one end to stop the beads from falling off and then helped my son lace the beads through it. It took some sessions of frustration but he learnt eventually. Now he’s a pro !!!
Make it fun – To make this task more interesting, you can use multicolored fruit loops and make bracelets out of it. The shoe lace with chunky play doh beads look like a tribal neckpiece and these could also be a great incentive to work for.
Using tweezers:
<image of popcorn with tongs>

What you need – tweezers/tongs/straws, popcorns
The activity –  If in between your trip to the beautician you are taking care of your eyebrows at home , chances are you have a pair of tweezers lying around. Time to put them to some more use. Pop some popcorns , put them in a bowl and help your child serve each of you a small portion with the help of those tweezers. For those who don’t have tweezers, a straw bent from the middle works just fine. However, when you switch to picking heavier stuff than a popcorn you might want to get one of those kids tongs for this exercise.
Make it fun – Set a timer and race against each other for who gets the most popcorns within the set time.
Paper crumple :
image of paper crumple>
What you need – Old magazines, trash can
The activity – This is another fun activity. Grab a few old magazines…promotional magazines that come in your mailbox and go directly in your trash is a good option.  Sit next to your child and place a trash can in front of you, not too far . Take turns ripping off paper from the magazine, crumpling it into a ball and throwing it into the can. Though it sounds like it does not have much of a merit to it but this activity actually has three components- tearing , which requires finger manipulation, crumpling paper into a tight ball increases hand strength and aiming at the basket is a good hand-eye coordination exercise. Also, tearing paper is a precursor to acquiring skills for a ton of daily activities like writing, opening sealed bags, or shredding pieces of food and many more.
Make it fun – Start a 2 person match , keeping score of who baskets the most paper balls.
Sponge squeeze :

<image of sponge squeeze>


What you need – clean sponge, water, cup
The activity – This is another hand strengthening exercise that my son loves especially because it involves water. Soak a clean dish washing sponge in water and let your child squeeze the water out of the sponge into a glass.
Make it fun– bring out a few bowls of water and add different food colors to those. Now together with your kid , set up a fake slush or juice bar by squeezing out the colored water in different glasses.
Coin bank :

<image of coin bank >


What you need – cereal/shoe box, coins
The activity – My son loved going to Chuck-e-cheese and he needed our help everytime he had to insert the tokens in. That’s when we realized how important it was to work on this skill. Take a cereal box, I used a Quaker’s oatmeal box. Make a small vertical slit on one of it’s side and a horizontal one on the other side  – big enough for a coin to go through and you are done.  I began this activity by placing the box such that the slit was on top, switching between dropping the coin through a vertical and a horizontal slits . Since it’s easy to push through a slit that’s on top than the one that’s on the side, I waited until he mastered the top slits. I then flipped the box so that the slit now faced the side. This one took some time to master but my son is now an expert (if he is paying attention  :) ) .
To make things further challenging, you can let your child pick up the coins on his own. Once they’ve mastered this skill, add another level of challenge by giving them a couple of coins in their hands and letting them use the same hand to push the coins into the slit . Bothe of these will encourage in-hand manipulation skills.
Make it fun – Create a play zone for your kid with his favorite toys lined up. Now allocate different coin counts for each toy. Let your child “deposit” coins in the box for any toy he wants to play with.
Pipe cleaner & colander :

<image of colander >


What you need – colander, pipe cleaners, bamboo skewers
The activity – This one is similar to lacing beads and works on grasping and similar fine motor skills. Turn a colander upside down and help your child insert pipe cleaners through its holes. You could then move on to bamboo skewers. Try selecting the skewers that fit snugly through the colander holes. I find these more challenging because they require a little more strength to push through the holes and that would additionally help with the hand strength. Pulling these skewers out is just as challenging because they need to hold down the colander and then pull out the skewers. It really helps with their motor strengthening skills.
Make it fun – once you have all the pipe cleaners on the colander, loop those back into another hole or twist those around in different shapes and make crazy hats out of the colander. You could make porcupines out of the bamboo skewers too but be careful, they are prickly :)

There can be several other games that can help your child acquire fine motor skills they are struggling with. Everyday activities present us with several opportunities to do so. Besides, they provide a meaningful goal for an activity than just sitting at a table and doing a list of tasks.

Activities like peeling fruits like oranges and banana are great for finger manipulation.
Ask your kids to help you with pouring water or juice in glasses and this could help with hand eye coordination.
Asking your kids to help carry groceries with you is another wonderful motor exercise and the kids feel proud doing “adult activities”.
When you whisk an egg or whip up a batch of cookies ask your child to help. It’s another great hand exercise.
Store their favorite treat in a container with a screw-on lid and everytime they ask for one, help them open the container on their own. They will need this skill everyday and it’s a great idea to work on it.
Don’t just hand them a candy, ask them to unwrap it or open that M&M bag themselves. Motivation is a big driving force for learning :)
Get a wind up toy that your child likes and watch them build their hand manipulation skills as they crank those toys up.
Next time when a package for your online order arrives, don’t throw those bubble wrap away. Have a blast popping those with your child. This is a great finger exercise.
Last week I needed a LOT of butter for something that I was cooking and I asked my son to unwrap all the butter sticks for me. He struggled initially and got a little frustrated but we finally worked our way through all 16 sticks and by the time we finished, he was already unwrapping on his own. Yay!!
My personal experience says ,making an activity fun and purposeful is an important factor in learning. Our homes are filled with opportunities to teach and learn. We just need to think outside the box a little bit. Also, the more chances we give out kids to do chores around the house, the more skills they are going to acquire. In Spite of their challenges , it is important to give them as much independence as we can for them to learn and grow.
Have fun being a mommy-therapist !

Full Source: disableddatingclub.com

Dear Bipolar Disorder, How Are You Doing?

Dear BP,

Hi, how are you? How have you been? I’ll admit I’m a little
nervous writing to you because I don’t want you to think I’m asking to see you.
And I don’t want you to think about me and decide to visit. I’m just not ready
to be around you. But I did want to check in with you since you’ve been
relatively quiet lately. If you recall, it’s been about six months since we
spoke. Well formally anyway. I see your posts online from time to time but I
never comment. I think we were last together at the hospital, right? That
particular stay was a doozy! I hope I never go back. Remember that one girl who
kept attacking everybody and calling us names? That was so wild.
So Ziprasidone and I are pretty friendly
these days. I know how you guys feel about him, which is also why I’m staying
away. But he’s good for me. I do miss our old friends though. How’s Elevated Mood doing? I hear she might be coming to town
soon. I know she always heads this way in the spring for an extended visit. Ooh,
maybe she’ll get to see the cherry blossoms this time. Tell her I said ‘hi’ if
you talk to her. Out of everybody, I miss her the most. She can be a lot to
take, but she doesn’t mean any harm. She just has a ton of energy. We always
have fun when we’re with each other. I wouldn’t mind getting together with her
for old time’s sake.

Hey, you know who I’ve been thinking about? Impulsivity. Man, we
used to get into so much trouble back in the day! I’m so glad I’ve learned to
love him from afar. But sometimes I like to reminisce about the things we used
to do. If nothing else, to remind me what life used to be like before my health
got better. Do you remember when he and I went to get matching tattoos?
Goodness, it was like we couldn’t help ourselves. We just had to do it and
nothing would deter us. I was shaking so much in the chair from all my nervous
energy that the tattoo artist got upset. He said if I couldn’t’ sit still, he
wouldn’t continue. Imp just laughed at me.
Afterwards I felt so ridiculous. And by then, Imp was nowhere to
be found, as usual. I was embarrassed I’d let him talk me into getting the
tattoo. What bothers me is I’m not even supposed to have those. It’s against my
religion. But as soon as Imp started hyping up the idea, I couldn’t say no. And
it came up out of the blue, so suddenly too. We didn’t think about the
consequences or wonder if we’d regret doing it. This didn’t occur to either of
us. All that mattered was getting that ink. To be honest, we’d been hanging out
with that guy Compulsion too often back then, and we let him influence our
choices. I think both Imp and I are pretty suggestible, if you ask me.

Oh my gosh, do you know what I did the other day? I decided to
create a gratitude journal to remind myself of all the good things in my life
that I’m grateful for. Oh BP, it’s been such a help. Every day I write about
the things that make me happy and what I appreciate. You know they always
taught us to do this whenever we’d go to the hospital. Well I finally got
around to it. You should try it sometime. You’d love it!  And maybe it will give
you a better outlook on life.
Guess who I’ve been chatting with lately? Insomnia! Can you
believe it? I know we used to hate each other. But we’ve since reconciled and
we’re spending almost every night together. We laugh and carry on like two
little old ladies. Her jokes about not sleeping are too funny. And she still
loves to play pranks on me in the middle of the night, as much as she always
did. That Insomnia is such a card! We really have to stop meeting up though, or
I’ll get sick again. You know how that goes.

So I have to know, how’s BPD doing these days? Do you see her
often? Has she gotten herself together yet? Last I heard she was ruining yet
another relationship. I’m sorry to say it but I hope I never interact with her
again. She and I do not get along.
She makes me so mad, I can’t stand it. And we always bring out the worst in
each other. It’s always all or nothing with us. Things are either great or
horrible. There is no in between, it’s awful. She’s just not a good influence
for me so I try to avoid her at all costs. And if you remember, I had to go to
therapy partly because of her. I’m still salty about that. I’m not trying to shift
blame or anything, but I can’t help thinking that if I’d never met her, my life
would’ve been much less stressful and anxiety ridden.

Speaking of my cousin Anx, did you hear she had a baby? Yeah,
she named her OCD. I’m not one to criticize name choices, but OCD? Ok, I have so
many questions. Don’t tell my cuz 😉 But why that name? What does it even mean?
That kid’s going to have a tough time in life with a name like that. Why OCD? Is
it a family name? Is it symbolic in some way? I keep saying it over and over,
letting it roll around on my tongue so I can get used to it. It just makes me
feel so prickly inside when I say it. But I can’t stop. I’ve repeated it about
500 times now. OCD. OCD. Nope, I still can’t get used to it. It sounds strange
in my head, like an echo and a hollow tinny sound all at the same time. Oh wait;
I’m getting fixated again. Don’t mind me. You know I do this sometimes. It’s
gotten better, but I still slip now and then. My brother Buspirone has been
helping me overcome it. He’s been such a blessing. He has his moments, like
everybody, but overall I’ve loved having him around. I wish I had told him
sooner that I needed his help.

You know, Depression has been on my mind a lot lately. I can’t help thinking
about him and wondering if he’ll ever get better. He just seems so lost
sometimes. It’s like he lives in his own dark world where no one can reach him.
I feel so badly for him. He brings everyone down with his misery, negative
outlook and detachment, and he doesn’t even realize it. He’s a good guy, just
misunderstood I think.
I guess you heard that Anger and I made up a few weeks ago. We
decided to part ways for good, but in doing so I think we’ve reached an
understanding. I’m so happy about it. I
think he realized how he much he was hurting me and knew why we couldn’t see
each other anymore. It’s really for the best. I sometimes get scared that I won’t
find anybody else, but I’m trying to be patient. I don’t want to go back to him
just because I’m lonely. It’s hard though. Being alone I mean. I can’t shake
the fact that I’ll die by myself, with nobody there to notice. That thought
bothers me all the time. People say ‘just be positive’. But even in doing so, I
haven’t found anybody else that understood me like Ang did. A friend of mine
always counsels me to accept things as they are and to look forward to better
times. You know that girl Patience? The one everybody always talks about? Well
she’s his best friend. I guess that’s why he’s always so calm and collected. Maybe
I should meet her someday. She sounds lovely.

I’m not even going to ask about Grandiosity. He annoys me to no
end. Always thinking he’s better than everybody and deciding he can do whatever
he wants. He seems to think the world revolves around him. That guy is so obnoxious. And he makes me look bad
when he’s around. I get sucked into his schemes and plans, and I forget who I
am. But his presence is so intoxicating. You know how he is; charismatic and
charming…until he completely alienates everybody with his over inflated sense
of self. I’m sure I’ll run into him again soon. It’s inevitable.

Oh wow, I just realized this whole letter has been one big
gossip session. Hey, maybe we both needed that. Anyway, I hope you’re doing
well, BP. I don’t hate you or anything, but I need some space. I hope you can
accept that. I know we’ll always be in each other’s lives. I just think it’s
best if we limit our time together. Take care of yourself.


Full Source: disableddatingclub.com