No Cans! No Cows!

Last fall when school started, I missed my dear children and prayed for a winter snow day in the season ahead. I had a vision of a white wonderland, snow glistening in the moonlight, board games and earmuffs…boy was I wrong! It was a similar story on day one and half way through day two. I love my children and cherish being home with them often, but we have been together in this house for nearly a week. Today, when the school bus came chugging down our street, I felt a pitter-patter in my heart. Trent is off, its just Chase and I today. So, back to blogging, I go. Somewhat encouraged by the friendly graph that Facebook shows, that reminds me that I haven't posted in over a week. Today, I type away, in between the contractors and insurance company arriving – sad to report my wonderful screened in porch, is gone. The roof collapsed from our heavy, wet snow. It was more than a porch. Sniff! Sniff! It was hours of elbow grease and money spent over the last couple of years to make it my perfect oasis, outdoor play area and summer dinner spot. Sad, but maybe I can rebuild. Enough on that. So, I think it's time to catch up on what I have been up to and torturing my children with over the last week!



    I kindly refer it as the "slight change", "no big deal", "just try it for a week" – as NO CANS! NO COWS! The entire process started about 2 years ago when I was trying to lose my baby weight. As, I have mentioned before, I have no "shame in my game" when it comes to my pregnancies. I get huge! After Chase was born, the HCG diet was popular. Basically, starvation, but the weight came off, I lost about 35 lbs. It was a good refresher on eating healthier, as the diet consist of low calorie, whole foods, and low carbs. Of course, over the last 2 years and a complete Hysterectomy, most of it has crept back on. No excuses, but it sucks. I have battled weight since my late 20's and tried all of the quick fixes, including Cabbage Soup, Weight Watchers and Slim for Life. I am sure that I have spent thousands dollars, including hundreds on laxatives – as Slim for Life was temporarily coined "Clogged for Life". Horrible! TMI? I know I need to lose 30 lbs.; Most importantly, make changes to our eating habits and increase activity. There is no easy way out.

    I have friends who exercise obsessively, purge, starve themselves – I am not envious. I do not want to have the body of a 12 year old boy. I want to embrace my curves, be healthy, active, enjoy food and not feel deprived. My goal is to increase my energy and maybe drop of few pounds. I think it is imperative to have good body image for your children, I NEVER complain about my appearance in front of my children, instead promote acceptance of what god gave you. Trust me; I know that if you see me, you may wonder why is she offering healthy eating tips? Well, I am not perfect, but I have made changes within my house that are easy and encourage better eating! Maybe one or two of them will be valuable in your home too! I am not an expert, but we meet with a Nutritionist a couple times a month..that has helped our family achieve these goals. She is great and promotes the same well balanced life style that I encourage!


NO CANS!
I went from 200 cans in my pantry – to less than 10! Get rid of them – fresh or frozen is BEST! The BPA issue is up for debate. I really don't care what others say - Anything that is preserved (including boxed items) can't be good for us – aim for FRESH!
http://ekowarehouse.com/2012/12/canned-food-the-dangers-behind-the-convenient-can/



NO COWS!
I have never been a milk drinker – except in my cereal. So, I am not really at a loss for this elimination. I am not trying to scare anyone and not trying to inflate the facts. But store bought milk should not be consumed. On a different level, I think that the milk industry and schools work together to promote this excessive consumption of dairy! Did someone say.. early puberty??? I cringe at mothers buying 4 gallons of milk…just say NO!!!!!!!

Milk kills cows. It is true – if a calf were to drink milk from our local grocer – it would die. Raw milk is best. Personally, we use Almond or Coconut Milk (it comes in flavors for your Chocolate Milk addicted child). They may protest the taste – but when there is nothing else to drink – they confine. A few years ago – I bought nothing but Soy Milk. Knowing what I know now – I wish I never did – Soy has its own issues!

This also means No yogurt, Cheese, etc. We are using the last of our yogurt and by the end of the week will be completely dairy-free. Full disclosure – Some people respond differently to Sheep or Goat milk products. I love sheep and Goat cheese- so I will probably stick to these options from local fromageries (cheese makers).
Why is this milk concerning? It is because of the processing AND the added hormones (very bad for men, women and children and your dog)

http://www.newsobserver.com/2012/02/22/1873497/labels-on-milk-give-clues-to-hormones.html


If you really want to be frightened – read this:

http://rense.com/general26/milk.htm



Sweeteners:
– NEVER USE ARTIFICAL SWEETNERS!!! EVER! Google the trick names they are using to slide these in your foods!
I love Liquid Stevia (NOT Truvia or anything powdered) – you can find this in a Health Food Store or Hy-Vee (Health Food Section). It will seem expensive, but one bottle last me almost a year. I only use 1-2 drops per cup of coffee, tea, smoothies. Also, an option.. Raw Honey or Raw Sugar – the real thing! Many people find Agave Nectar a great sweetener, I have never used it.



Coconut EVERYTHING!
Coconut is SO healthy for us! We use Coconut Milk, Coconut Oil (In everything), and Coconut Milk Creamer (for coffee). It is also a great moisturizer for your skin! The options are endless, invest in some!

http://www.naturalnews.com/036156_Coconut_oil_superfood_healing.html

http://www.doctoroz.com/videos/surprising-health-benefits-coconut-oil



I CAN'T BELIEVE IT IS BUTTER, YES BUTTER!
Never, ever use margarine or any other fake "spread", Real Butter is Great, use often!



Limit or Eliminate Gluten- Your body will thank you!
Chase is Gluten Free – about 99%, Trent and I have drastically reduced the amount of Gluten in our diet. One of the things I notice when I do this – I have less swelling (water retention). We both have migraines, I have heard good things about Gluten Reduction and less migraines. Looking Forward to it. There are some great Gluten Free snacks – but not everything "Gluten Free" is great for you – watch the preservatives – remember the goal is less man-made foods!

Stay away from Sugar free, Fat Free – Full of Fake sugars! Eat Real Food!



Medications L -
We use ZERO daily medication in this house! I have an occasional pill for migraine relief – that's it! Get rid of them, unless it is to save your life – there are healthy alternatives.
I heard Dr. Hicks (and wife Betsy) speak recently – really like their approach. And, they offer Skype visits!
https://elementalsliving.com/services/holistic-pediatric-appointments-with-dr-hicks/

This is a link to the exact lecture I went to, very informative!
https://elementalsliving.com/2013/02/25/free-nutrition-lecture-by-betsy-hicks-download-now/



Supplements:
Keep it simple and effective. Use quality! I won't go into details on each – these are what Dr. Hicks suggest – more is found on his website listed above!
For everyone in the house! Forever!

• B12
• Probiotics – daily
• Multivitamin
• Cod-liver oil

Water!
Drink half your body weight in ounces or more!
I drink much more than suggested – but I love water! I usually drink about 1.5 liters to 1 Gallon per day.


Poop Matters!
You are what you eat! So, if your Poo time is irregular or abnormal – stop and look at what you are eating and drinking (Water??). Poo tells the whole story! Make it great! J

DO NOT USE MIRALAX – ever! It has a connection to Antifreeze – I'm not going to give my 2 cents – but this article should provide you with the info you need.
http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html



Veggies:
Ugh! Painful for me – I'm not a big vegetable fan! But I love Cucumbers and Spinach. Find what you love and hide it!
I made meatloaf last night with Spinach – no one knew!
I made a banana and berry smoothie with a cucumber, the kids loved it!
Avocados are the best – eat them up! Full of great stuff!

These are the changes that we have slowly incorporated into our world. It has actually been easy! We eat great 90% of the time. I confess, we still have the occasional fast food in a hurry or scone at Starbucks.

My next changes are to eliminate High Fructose Corn Syrup and add even more Cultured Veggies through Fermentation (These are great for you!)
http://www.culturedfoodlife.com/cultured-vegetables/



Now..Go Eat Healthier!!!
-Sargent Stacey





 

The F Word

Friends...

People often ask politely, “soooo, what is wrong with Chase?", "How do you pay for all those medical bills?".  In the beginning it was actually entertaining to have the random (haven’t heard from you in 10 years) phone calls, emails and far-removed facebook friends inquire on my child's condition. I found it particularly odd that someone who you barely know is sending a message with the preface..”I know it is none of my business…but…”. Exactly, it is none of your business! I never was rude and always replied in a short and sweet manor. I was more drawn to the friends or acquaintances who approached me in the “I have a similar situation..let me know if you need assistance” messages. 

But, the thing that I remember most, is the calls that I never got. Yeah, Yeah..I know… it IS time to move on, and I have. But, I am sure that many can relate, when dealt with a personal crisis – sometimes you except more from people. Sometimes, you didn’t want the nosey questions regarding the latest test or surgery, but rather ask “how are YOU doing”, “do YOU need anything??”  Not pity, Not Sympathy, just geniune conversation. Then, a revelation..I was looking in the mirror at the person who I should have been relying on the most.

                I always joke that after the first year (the hardest) was past us and Chase started sleeping – I was finally a flower that bloomed. I was extremely sleep deprived. When I finally started to put things in perspective, I reflected on the first year and appreciated the true friendships that I made. I also learned to summarize his health in 25 words or less, because, I don’t have to explain his personal issues. And, I left my venting or questions for my friends that could relate and facebook boards specific to his diagnosis (es).  

                My delivery with Chase was torture, no less. I remember it like yesterday, whoever said that you forget it, was trippin! Not only did my body reach new heights in pain, I felt like I could surpass anything. It truly gave me a level of internal confidence. Just two weeks after his birth, I found that I would need to reach back to that space, deep inside my soul for courage and strength.  It also taught me a valuable lesson, I can only depend on me. I run this ship, solo. I can not expect the unexpected from those who are a part of my world, I can only rely on my internal motivation. This is said, not to discount the people closest to me, that provided strength and encouragement during these times. But, only to point out the internal transformation that takes place when a crisis enters your life. I truly think that my DNA changed, to put it a bit softer, probably a metamorphosis.  (Great article from Oprah on Life Changes)

http://www.oprah.com/spirit/Strategies-to-Deal-With-Every-Phase-of-Major-Life-Changes/1

                I would consider myself a “good” person before, I am honest to admit there was a slight misdirect in personal confidence, empowerment and focus. I don’t wish this journey on anyone, yet, I wouldn’t trade it for the world. I have tested my own strength, and proven it to myself. I am a better mother, a better woman. I see the small things, appreciate the medium sized successes and embrace the large blessings.

In case you didn’t notice, medical terms were not mentioned in this blog. It is purely about the journey, most importantly, the selection. I have strong belief in faith and destiny. I was selected to be the mom of these boys, triumphs, tribulations, giggles and puke. It’s not perfect, even today, I have prayed for more strength – juggling it all still proves challenging.  This morning was tough, while doing a  tube feeding (don’t ask what is in it) it exploded in my kitchen  – at least 20 feet – at 8am (pre-coffee). I didn’t get in the shower until 12 and didn't eat my soggy cereal until 12:30. I’m sure that I will be finding green slime in my hair 2 years from now.  It wouldn’t have been so bad, but it also happened yesterday, and the day before.  I was tired, frustrated and out of gas (mentally..lol).  

When I want to recharge, Erma Bombeck lifts me up. This is my fav read when I need that extra boost of “come on Stace, you can do this!”

The Special Mother

**This is old, I replaced the word "Handicapped with Special Needs"

by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of special needs children. Did you ever wonder how mothers of special needs children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a special needs child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a special needs child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

xox -Stacey

 

Know the Sign!

Since most of my thoughts are about parenting, I thought I would share my best piece of advice for new parents – teach your child Sign Language! It is very simple and you can incorporate it into your daily activities. I started with Chase when he was about 6 months old, it was the best decision! As time went on, we realized that he had a speech delay, knowing the basic signs helped him communicate. Now as he is progressing with his speech, signing is a tool used along with speaking.

My tips:

• Never too early to start
  
• Sign in conjunction with speaking, simultaneously
  
• Use it for everything, consistently
  
• Use various forms of signing education; our favorite is Signing Time (Library or Amazon)
  

http://www.signingtime.com/index.php/?gclid=CMur3-mUvrUCFcZFMgodgRUAUQ

• Stumped? Attend Signing classes; here is one in Overland Park, Kansas. Of course, being the frugal lady I am – I can't justify the cost!
  

http://www.lovelanguageforbabies.com/

• If your child is receiving any kind of therapy - make sure your therapist is incorporating the signs that you are using at home!
  
• Acknowledge your child's attempt to sign, just like they are speaking to you. It doesn't have to look like the video, we respond to his signs regardless of how perfect they are!
  

I taught Chase signs that were appropriate "toddler language". I did not teach him signs for complicated things, we simply use signs for frequently used words: more, drink, play, music, bath, cat, dog, nite-nite, drink, eat, grandma, all-done, brush teeth, etc…

We also have found that using signs for other tasks has helped his speech. For example, the itsy-bitsy spider song uses hand movements. Chase will hum the song if I show him the hand movements, without singing. We often point to our wrist (time) to go wave (bye-bye). This helps them attach a gesture to a word.

Don't get frustrated, the biggest reward is when your child signs (multiple signs together) without prompting. We use about 15-20 signs frequently, at this point I have not introduced new ones, as his speech is picking up.

Until your child becomes a fluent speaker, signing can connect you to your little bean and understand what they want. Today, I was swinging Chase around in circles, singing and playing. As soon as I stopped, he would sign "more play" and say "mo pa". I know I made the right decision in giving him empowerment to communicate!

Here are a couple facebook pages with resources:

http://www.facebook.com/theoriginalbabysigns

http://www.facebook.com/pages/Baby-Signs-By-Erin/118773644814836

-Stacey

 

 

Binge and Purge

Today, I purged. No, I’m not in a 12 step program. I talked about this briefly before, but,  I have an obsession with Purging. Basically, it is the opposite of hoarding. I’m sure it results from many factors: Psychological (low attachment to material objects), OCD (my internal balance is based on my house being clutter-free) and thrifting (I like buying new items – so must get rid of the old).  Most importantly, when I am long gone – I don’t want to burden my children with a bunch of “stuff”.

For those who are trying to accomplish the same thing. My first point is remind you that it is NEVER to late to start and don’t get overwhelmed. Growing up, I had a closet the size of my current bedroom – really, I did. I used to have sleepovers in my closet. I was blessed with material possessions. In High School, I was voted “best dressed”, I’m sure this had something to do with this extensive wardrobe.  My closet today is about 1/20 of what it used to be (my small closet is only half full). It is true that you “wear 10% of your clothes, 90% of the time!”

 

                Clothes – I don’t spend a bunch of money on clothes (see my blog about thrifting), so I have NO attachment. Even my wedding dress(es) are M.I.A. !  When I let go of clothes, there is no resentment. I try to purchase clothes that are flattering and fit well (mostly basics). But, if I get an item home and it is not “becoming” on my beautiful figure J It is removed. If I have not worn an item in 1 year, it is removed. If it is too trendy or out of style, it is removed.  I follow the same guidelines for my kids clothes. Here is the secret, I purge – All the time!  When I am folding laundry, if I notice an item that fits in one of the above categories or a sock/undies with a hole – it is put aside.  Most of the time, I leave a plastic Wal-Mart bag in the kids closet and as they out grow things, it goes in this bag. So a couple times a week, I take the items that I have gathered and divide it up.  

For my clothes, I consign once a month. I actually don’t do “consigning”, bad luck with that. But, rather the stores that purchase while you wait.  I start with Clothes Mentor (really good luck with them) or Ditto (great results) and what they don’t purchase I take to Plato’s closet (trendy teen). For those of you in my local area, I have also had some luck with White Clover, but not too impressed with what they give for cash buying. Often, I get paid back more for my clothes, than what I purchased them for. It’s a win-win, and provides money for my next thrift trip! For my kids, I do well at Children’s Orchard (up to size 16). I only  go during walk-in hours and try to be the first one there. However, I rarely purchase at Children’t Orchard – I get more for my money thrift shopping.  I have been blessed with Chase, he gets hand-me-downs. And, due to the fact he is a slow grower, his clothes are worn well. I typically donate his items to a needy family or thrift store.  For those items that don’t succeed at a “consignment-type” shop, I donate to my local thrift store. I am careful to always get a receipt for my donation AND a coupon for 25% my next purchase.  I tend to donate at Salvation Army or D.A.V. The store Savers has a punch card type program, that offers big incentives for donation. However, I find that their items are high priced, so I don’t really save in the long run.

                Kids Toys/Household Items – Usually go on Craigslist, if they have value OVER $10. Of course, I encourage everyone to use Craigslist safety measures – I have had a couple of interesting customers!  One of my favorite places to Donate is the W.O.W. Ministry Thrift Store. I don’t get a coupon, but it is a good organization, doing great things for the community. They also offer good prices, so I enjoy giving them my business. If my kids are not using it, it is gone. We keep what they play with, not what has sentimental value.

                Papers – I open my mail OVER the trash can. I keep a very minimal amount of paperwork. I have never had to find an item that I didn’t have. I keep taxes, car and house papers.  After I read a magazine or book, I get rid of it. I have a collection of my 10 favorite books, the kids have 3 small book shelves. We utilize the library often, it keeps their interest AND we don’t have to store them! I own 2 cookbooks, if I need a recipe, I look online. For bills, etc. I keep a very small basket of important documents. When it’s time to get rid of books,  I sell at “Half Priced Books” first. They pay low, but it’s better than nothing. What I have left, I donate.

                Holiday Crap / Memorabilia – I like to decorate for the holidays, however, I don’t want to store the festive junk! So, I have the typical plastic bins marked 3 holidays to a tub. Christmas has 3 tubs, but still minimal.  As far as Memories, I do keep a couple of things. I pick out a few of my favorite things for a  “Stacey Box”, which includes stuff from my first 35 years – and a “Kids Box”, I keep one outfit from the their infancy, a few favorite pieces of artwork and Baptism items. My mom still has my lost teeth. Nice.

                Kitchen/Bath- My makeup drawer used to look like the MAC counter. Now, it is only what I use – nothing more. This has also came with learning what my favorite items are, I use what I love and use it until it is gone. My linen closet, has only the towels that we need. I have one box of medications and 1 box of misc. bath items. I have one set of sheets for my bed, when those go bad ..I donate and buy another. See the pattern?  I do not overstock anything, except toilet paper and diapers!

I have heard every excuse from those who don't get it, and those who what to know how. We are a materialistic generation, its sad.  I have learned to appreciate what I have and get rid of what is taking up space. It is true,  some may find great joy and comfort in a house that is full. But, for me, I appreciate the clear mind that comes with clutter free and easy to find possessions.  When things have their place, it is easy to clean and provides a stress free environment.  Another perk, my kids know where their items belong, which helps with clean up. Start today, enjoy the gratification.

A couple of related articles:

http://www.sheknows.com/home-and-gardening/articles/972039/5-ways-to-keep-your-house-organized

http://www.myoneresolution.com/how-my-homeschooling-wife-keeps-a-stress-free-clean-house/

xo -s

Caring For the Caregiver

I recently wrote an article for Complex Child E-Magazine. It provides an honest insight into the benefits of Respite Care. The Feb. 13 edition is an overview of Tube Feeding Related Issues

(Feb. is Tube Feeding Awareness Month).

 

All of the articles are great, mine is the last (Featured Article). I encourage everyone to take the time to peak into a world that you may be unfamiliar with. There is no subsitution for education, understanding and acceptance outside of your world.

Link to Feb. 2013 Issue: http://articles.complexchild.com//feb2013/00447.html

My article:

Respite Nursing for Rookies

Stacey A. Anderson

I write this article to provide an honest insight into a world that you may be familiar with, foreign to, or a newbie. Everyone has a slightly different situation, and my hope is that a few of my suggestions can help your home operate smoothly, provide consistency and most importantly, give respite to the caregiver.

 

Chase’s Story

To give you a better picture, here is a little about me. I am a thirty-something mom of two boys. My oldest, Trent, is 12 and Chase is two. I resigned from a fabulous job in Corporate America right before I found out I was pregnant with Chase. I refer to it as a mini mid-life crisis, as I decided to leave my career and upscale community to move to a small college town, further my education and rent a 1930s bungalow! Actually, life was great; I loved the slower pace. Needless to say, I must have been glowing, because soon after, I met a gentleman, fell in love and Chase was born! Unfortunately, his father lives several hours away and the relationship didn’t succeed. I found myself an unemployed single parent in a town where I don’t know a soul, with a baby who was a few months old and barely nine pounds.

September 23, 2010: the day my little blessing came into this big world. Over the course of his first ten months, Chase spent several weeks at our local Children’s Hospital. To spare the details, I will provide the “Cliff Notes” version of our complex health issues. Basically, Chase has been orally averse since birth, which resulted in feeds via an NG tube, now G tube. We are currently exploring various genetic diagnoses, so without an umbrella name to attach, I simply call his needs “complex.” Over the course of the last two years, we have learned that he has vision issues, dysphagia, intermittent brain activity, delayed speech, excessive (daily) vomiting, motility delay, dermatology issues, growth hormone deficiency and hip dysplasia. The good news is that Chase is a very social, active and bright child. He has brought so much joy into my life!

Exhaustion was an understatement. I was counting his every calorie, researching medical conditions and fighting with medical supply companies. He didn’t sleep. No, really, he didn’t sleep. During an average night he would rest 15-30 minutes at a time, lying next to me in a Boppy, hooked up to a feeding pump. For the first several months, if he wasn’t screaming, he was vomiting. I had to leave myself notes to, “take a shower today,” “spend time with Trent,” or “take the trash out.” You know what I am talking about if you have been face to face with severe sleep deprivation. If you are here now, know that I pray for you!

The reason I write this is to inform you about something that for me should have happened sooner than it did. At the longest stretch, I spent 22 days sleeping (with my eyes open) in a recliner at the Children’s Hospital, which was one hour away from my home. Numerous times, nurses would walk in and find me crying. I was scared and tired. Sure, Social Work checked on me, more concerned with my financial situation, to offer a food voucher and see if I was being “harmed” at home. True, these are very real concerns. But, not one person asked about me, what was going to happen when I was discharged, and not one mentioned respite care--the thing I needed the most.

I needed a break. I remember after the tenth admission, I decided to spend one night at home with my older son, thinking to myself, “I’m mentally checking out, I can’t do this anymore.” Obviously, since I had never stayed away from the hospital, I made sure that the staff would be able to get a hold of me for this brief 12-hour hiatus. Months later, after reviewing medical records, it was noted, “Mom is nowhere to be found during rounds,” which was heartbreaking. This entry should have read, “Chase is doing well, Mom told staff she would arrive mid-morning, she is home resting.”

Obtaining Respite Care or Nursing

Now that you have learned of my journey, I hope you agree that respite care is a valuable service to families in need. During one of our hospital stays, a nurse mentioned First Steps, our state’s program for Early Intervention services. Then I was put in contact with the First Steps Coordinator in my county. The idea originally was to get Chase in Occupational Therapy to help with his eating. Our lovely, grandma-like coordinator came by for a visit to start the process. I think she saw the despair in my tired face, and she took me by the hand. She asked who our nursing agency was; I had no clue what she was referring to. Stunned, she said, “You don’t have respite care?”

I thought respite care or nursing was only for end-of-life situations, and was unaware it could apply to my situation. I was then referred to our State Bureau of Special Health Care Needs. This step will depend on a combination of your home state, finances and insurance. If you have private insurance and are seeking respite care, I encourage you to start with the State offices; there are organizations that can offset co-pays for children with special needs. All states receive grants from the federal government to provide respite care, and most states have other Medicaid-based waiver programs that may provide respite or nursing care. Just know that there are options, and don’t stop until you find a way to access this kind of care. Visit ARCH National Respite Network to find resources in your area.

Luckily, I had applied for Social Security with Chase and he was approved and considered disabled. In our situation, having Social Security approval made the process of obtaining respite easier. I was connected with a Service Coordinator from our State’s Bureau. She came to our home, listened to his history, and could tell I needed any help I could get. I think of her often as my saving grace. I was immediately approved for as much care as I needed, up to 80 hours a week, based on his feeding schedule (use of G tube). This was a bittersweet number, as I wanted to have the relief, but also wanted to have privacy and be the primary caretaker in my home.

We started with 40 hours per week, but increased to 80 hours a week at one point (when doing overnight feeds). Currently, we are only doing about 15 hours per week. Hours are based on insurance and physician approval. This has not always been smooth. We had one doctor who didn’t see the need for care, and canceled our nursing care for two months! Shame on her! Our other biggest challenge has been finding a nurse because there is a nursing shortage.

Managing Respite or Nursing in the Home

Chase is eligible for an LPN (Licensed Practical Nurse), which we demand. Some children, based on diagnosis, will be approved for an aide, personal assistant, or patient care technician; others may only receive care from a Registered Nurse. We have had three long-term nurses and six short-term. The short-term nurses were fired by me. We have had nurses who have not showed up for a shift, had guests over, ate our food, fell asleep (while his alarm was sounding), stolen, forged time sheets, smoked and were caught leaving my baby unattended in the bath tub. So, needless to say, it hasn’t been all rainbows and butterflies! But we have also had exceptional nurses who bring joy and laughter to our home.

Now, that I consider myself a seasoned “nurse manager,” I hope that these tips will help if you decide to participate in home healthcare. First, I have a no tolerance policy. If I see any of the above-mentioned issues, a nurse will be immediately terminated. I do not allow excuses or second chances; my child’s health is top priority, period!

I search for the best agency in my area, not the closest, although I haven’t found any that have been great. I look for a seasoned company that is organized and carefully selects their nursing staff. I interview every nurse who comes in my home and personally train him or her for several days before the nurse is left alone. The agency only conducts preliminary selections, and if I am unhappy, then I keep looking.

I clearly give each nurse a range of hours, such as 15-20 hours per week. Then there is no confusion. I respect that this is their profession and if I cut back hours unexpectedly, this will impact their income and jeopardize our relationship. If I cancel a shift, I typically offer a replacement shift to keep the nurses happy. I also provide our holiday policy, since we do not staff nurses during holidays. We provide a schedule a month in advance, as I now work and attend school. Obviously, our nursing is only for relief, and some families may need more intensive round-the-clock care.

Our house is a tight ship! I run things in a very orderly manner and everything has its place. This works well for us, and for nursing staff that spend long days in our home. Even though someone is caring for your child, this is still a professional job; I keep personal conversations at a minimum and focus on the daily care of Chase. Each family’s needs are different; this is what is expected in our home.

We expect our nurse to strictly follow HIPAA privacy regulations and follow our daily/hourly schedule (includes feeds, weights, playtime, hygiene, naps), changing of linens, engaging in therapeutic activity, and excessive hand washing. We do not allow our nurses to bathe Chase, since we have had issues in the past. To make things easily accessible for our nurse, we provide a drawer in our refrigerator for her lunch; cleaning supplies are left for spills or accidents, and instructions are given for use of the washing machine. We have a specific location for coats and shoes (we don’t wear shoes in our home). We provide a nurse cell phone, a large note with our address and contact numbers, and an emergency kit for weather related emergencies. We have a nurse cabinet, where her supplies, stethoscope, gloves, schedule, thermometer, notes and an extra shirt are kept for accidents. We also use a binder, for Chase’s medical information (physician contacts and test results), including vomiting and weight logs that we expect the nurse to fill in.

For me, the hardest thing to get used to was lack of privacy. This depends on your personality; I had a difficult time having a stranger in my home and not being able to hang out in my pajamas. Nursing care for Chase in the beginning was a time for me to sleep; now it is time for me to catch up on household chores and attend work or school. We refer to our nurse as Chase’s friend and we don’t focus on the medical care that she does.

Currently, our two biggest struggles have been the use of television and finding substitute nursing. I am fine with a nurse reading, knitting or watching television while he is napping. And I think one hour of Elmo is fine, but our nurses have used it as a babysitter and left it on most of the day. A battle I have yet to win!

When our nurse is unable to come in unexpectedly, our agency (as with most agencies) is very poor at finding a trained replacement. At this point, I don’t schedule important engagements on nursing days in case I have to cancel.

I have laid out the good and bad when taking the step to include home nursing in your child’s care. I encourage you to play an active role, leave written daily updates and touch base verbally at the beginning and end of shifts. It never hurts to stop in unexpectedly and make sure the care meets your expectations. Remember, it is your home, your child and you set the ground rules.

The Break is Worth It

Each family may look different; you could be working parents, single parents, seasoned parents or first time parents. Your home could include a preterm infant or a teen with a traumatic brain injury. Our families are strong, but many have been strong too long. Respite, a break, may change your entire day and give you strength for the next.

It is my hope that insurance companies and physicians understand the impact that a child with special needs brings into a family. It is my dream that they consider the entire family unit when determining approval of respite care. I am not ashamed to say that nursing care saved me, my sanity and allowed me to clearly absorb the complicated health issues that my child had. My motto: “Care for the Caregiver!”

xo stacey