“Star Thrower” by Loren C. Eiseley

starfishOnce upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

How to Talk to a Special Needs Parent

casey1I am a mother of an amazing little six year old girl, Casey. Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring).

Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.

casey2First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.

Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?”

BAD:

  • Does she have a cold?
  • He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.
  • Oh gosh, he is really throwing a fit, he must have autism, right?

GOOD:

  • How old is she?
  • I have a little boy that like’s trains too (if the child is holding a train or something).
  • That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child.

NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

BAD:

  • What’s wrong with him/her?
  • Is he/she sick?
  • Should I call someone for you?
  • Do you have to do that here, can’t you step away?  That’s so gross.

GOOD:

  • I have never seen anything like that (referring to equipment- not the child), what is it?
  • It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

casey3When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away.

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

BAD:

  • Wow, how do you do all this?
  • I don’t think I could do this at all.

GOOD:

  • I’m impressed, you really juggle a lot.
  • Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective.

BAD:

  • Oh that’s nothing, so what if your child has ADHD at least they walk.
  • I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
  • How long will this last?  Or how long does he/she have?

GOOD:

  • It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.
  • Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc.

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder.

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

This content was originally created for and published by Papas of Preemies.

Feeding Tube Tricks

Do you have a child that uses a feeding tube? Do you have to give your child medications, sometimes on the go? If you answered yes, then this tip is for you. Imagine you are away from home and need to give your child his or her medication. Usually you have a medicine cup, water, and the comforts of home to pour in some water and let the pill dissolve in the cup. You forgot to pack cups with you and you don’t want to drop the pill into the bottle of water because you need the water for other things too. Did you know that you can pull the plunger our of the syringe, drop the pill into the syringe, place the plunger back in place and then pull up water to let the pill dissolve in the syringe itself? Not only will this save you from having to carry extra supplies from home, but it also helps to make sure that the entire pill is given. I can’t begin to count the number of times I pulled back the prevacid after it dissolved to have little grains still hanging out in the bottom of the cup. Once I learned this trick I used it for all kinds of pills. As long as they could dissolve, this was a huge time saver.

Many of our tubies wear cute little tube covers. They are cute way to accessorize, and they are reusable unlike the box of 30 disposable gauze pads that never last the entire month. If your child’s tube leaks at all, you may notice that these pads get STINKY! Even after just a few hours they can be nasty. When you take off the pads to put them into the wash you don’t want to just toss them into the laundry basket. One, they are small and can get lost, but also you don’t want to add the stinky pads to the regular laundry. Lingerie bags can be found at any general store (Target, Walmart, CVS, etc.) in the laundry section. Put your bag in an accessible location at home and when you take off the pad put it directly in the bag. The entire bag will then go into the wash. You will never lose another cute tubie pad.

Collecting Samples

How many times has your child’s doctor told you to collect a urine sample? I could not even begin to count how many times that request was made. When your child is in diapers this can be a lot harder than one may expect. You need the sample to be clean, but it’s not like you can wring out the diaper. There is a way to make this much easier. Cotton balls! Yep, that’s the secret. Keep cotton balls on hand and when you get this request through a handful into the diaper (4-5 should be plenty unless they are the huge ones then 1-2). You can toss the entire cotton ball into the collection cup, or you can glove up and wring out the cotton ball into the cup. It saves some much time waiting to catch your little one midstream in the diaper.

There are collection bags that you may be able to have your doctor order for you too. These are pretty cool. They have a sticky opening that you can adhere to your child’s skin and then it has a plastic baggy that will collect the urine. If you find that you need to collect samples fairly often it may be worth it to ask your doctor to order some of these so that you can keep them on hand. Or, you can buy them directly off of Amazon.

We always kept a handful of collection cups, bags, cotton balls, and even sputum traps on hand. It was so much easier to collect these at home and save a trip to the clinic for collection. Most doctors will have some of these on hand that you can take home with you, and if they don’t, you may be able to get them to order some so your insurance covers it instead of paying out of pocket. You can check medical supply exchange groups as well, other parents may have extras they can share.

Keep It Clean

When you have a child with special needs GERMS are one of your worst enemies. I think most of us would love to put our kids in a bubble during cold and flu season and just keep them there safe from harm. That’s not very realistic though. There are some ways to help reduce germs not only for your child, but from your child too.

Let’s start with that suction machine. You know that the stuff you pull out of your child can be kind of gross. Did you know that after you clean out the canister (daily, hourly, whatever) you can put a capful of mouthwash in the clean canister? By doing this, especially if you use one that has antiseptic, you can reduce the germs and the smell coming from the canister.

One thing that is simple is to keep Lysol (or something similar) wipes handy. When other kids would come over to play I would use these bleach wipes to disinfect any toys, surfaces, etc before they came and after they left. I still have tubs of wipes all over my house and I find TONS of uses for them.

When you go to the clinic or have to spend time in any type of waiting room you can always ask the staff for a mask. It would be great if all sick people wore them, but they don’t. That doesn’t mean you can’t put one on your child. If they don’t have them, let the staff know that your child really can’t be around sick germs and they can usually move you to a clean area to wait away from the crowd and away from the germs.

Shoes is another big one. Be sure to have people take off their shoes when they enter your home. Shoes track in so many germs!

Here’s how I see it. No one wants to be that naggy mom that always cleans the toys, reminds you to wash your hands and take off your shoes. I get it. Let me ask you a question though- would you rather be the naggy mom or would you rather have your kid in the hospital with the flu, RSV, or whatever nasty bug is going around? If there is a chance that my being the nag could have kept my daughter healthier I was totally willing to wear that hat.

Organizations for Kids with Special Needs

We would like to share/feature some FREE items that you can obtain for your little ones. There are many wonderful organizations and individuals who are volunteering their time and efforts to bring joy into the lives of our children. If there are any that we missed, please comment below with details. Thank you to all of these organizations and individuals for doing what you do- it really does make a difference.

Kourageous Kids
Creating tailor-made books for children with terminal illness depicting them as the heroes they are. Hope is precious. Let’s share it.

Sweet Dreams for Kids
Sweet Dreams For Kids is a nonprofit organization that donates new pajamas to kids in the hospital. We want to take the “ICK” out of being SICK.

Pillowcases for Patients
To bring joy and smiles to kids with life-threatening illnesses, check out Pillow Cases for Patients.

Love Quilts
Welcome to the homepage for Love Quilts! We are a cross stitch group that creates cross stitched quilts for children with life threatening or life long illnesses. Love Quilts began in February 1999 and in the fall of 2003 we passed our 100th quilt made! We sent out our 550th quilt in January of 2011!

Please feel free to browse around and view the webpages that have been created for these special children. See the navigation links on the left side of this page for more information you will need to help Love Quilts.

These quilts are being made by a lot of wonderful people from the US and even other countries! These squares are counted cross-stitch only, not stamped or machine stitched. Most children are offered on a sign up basis and you may randomly pick the children you wish to stitch for. We also accept “any child” squares which are saved and used when an odd number of squares come in for a quilt or, when we have enough, to create a full quilt for a child who might not be able to wait the several months it takes to get a quilt made via sign ups.

Blessing Boxes
Hi! We are Sara and Alexis and we are Blessing Boxes. We send boxes of blessings to children with cancer and other life threatning diseases. We are both teenagers and we love helping these kids! If you have any questions message us!

Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.

Project Sweet Peas
Project Sweet Peas is a non-profit organization run by volunteers across the country, who through personal experience have become passionate about providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss.

Our programs support the wellness of families by providing care packages and other services that offer comfort while furthering the bond between parent and child, and treasured keepsakes to families who have experienced a loss.

Through our services, we give from our heart, to inspire families with the hope of tomorrow.

Peach’s Neet Feet
Peach’s Neet Feet donates custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. Every shoe is customized to complement each child’s life, interest, and courageous fight. These personalized, one of a kind gifts lift the spirits of children and their families. When a child is fighting an illness, the whole family is impacted. With the web of caring individuals and the gift of personalized shoes, families are supported and strengthened.

Tubie Friends
For children receiving a feeding tube, a stuffed friend with medical equipment mirroring the child’s can make the entire process less frightening. As much as possible, we mirror the child’s medical interventions to the animal by placing a similar feeding tube, as well as additional medical interventions such as central IV lines, tracheostomy tubes or oxygen cannulas if possible. Additionally, each Tubie Friend comes with a parent letter providing information and listing support groups for feeding tubes.

Tubie Friends were initially intended for people with medical devices and are developmentally under the age of 18. However, we know there is value in an adult, school, siblings, caregivers or doctor having a Tubie Friend as well. Currently, our donations are solicited and collected for children, so we need to use our funds for children. To meet these other needs, we have started a fundraiser that allows anyone to own a Tubie Friend and support our cause at the same time. If you are not requesting a Tubie Friend for a child, please visit our products page and request a Sibling Tubie Friend. If you have questions, please email us.

Songs of Love
The Songs of Love Foundation is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.

Cole’s Quilts
A group of stitchers who come together to create hand-made quilts for children who have or have passed away from SMA. Founded in Cole Webb’s honor.

Angels for Hope
Receive or send free crocheted angels, butterflies or smiley faces as a reminder that you/they are not alone and that someone cares!

Pages for Children, Inc.
Pages for Children, Inc. send various kinds of books, birthday cards and appropriate holiday cards (each with a personal message inside), as well as other items.

From Z with Love
Send to care packages to new OI babies and their parents, including altered clothing, lists of resources, testimonials, and some of the types of things Zayana loved. We know she would have wanted to spread her love to all of the other OI babies!

Coping with Laryngomalacia
Through the many different programs, Coping with Laryngomalacia offers families socks, blankets, formula and much more.

Cards for Kids
I’m really excited to start a Facebook page where I can use my love of crafting and making cards and gifts for good causes. I have done this for a long time. Usually I go on Ellen Degeneres’ Facebook page and when I see a story that touches my heart, I do something to brighten that persons life. So I created my own page in hopes people will join me. I really care and just want to make sick kids days brighter. So, if you know someone who could use a card, message me or post their story and I will message you for address and details.

Pop ‘n Grow
Pop ‘n’ Grow is the U.K’s only neonatal clothing charity that supplys it’s unique patented clothing to Neonatal units across the U.K 100% FREE.

Project Linus
First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.”

Little Princess Trust
The Little Princess Trust provides real-hair wigs to boys and girls across the UK and Ireland that have sadly lost their own hair through cancer treatment.

Locks of Love
Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. We meet a unique need for children by using donated hair to create the highest quality hair prosthetics. Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers.

Emmy’s Heart
Emmy’s Heart volunteers create tutus and crowns for BUTTERFLY PRINCESSES and capes and masks for SUPERHEROES undergoing treatment for serious illnesses or disabilities in South Florida.

Butterflies for Courageous Kids
Hey Everyone,my name is Alli and I am 19. I am a sophomore in college battling a Chronic Illness called Gastroparesis (since 2009) and am currently studying to become a nurse for pediatric oncology. I am also the founder of this project and a huge supporter of the Jessie Rees Foundation and encouraging courageous kids to NEGU ( Never Ever Give Up). I want to customize each butterfly to fit each unique kid. I want it to have their interests and likes shown by small drawings and images. These are completely free to courageous fighters and their families! Request away!

Sisters by Heart
Sisters by heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our congenital heart defect children. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.

Gracie’s Gowns
Gracie’s Gowns make hospital gowns for chronically ill children throughout the US and internationally as well. They are personalized with the child’s name and I match the fabric/gown to what the child likes or is interested in the most.

Feel Better Friends
Feel Better Friends are handmade dolls stuffed with love and well wishes, crafted by volunteers and donated to children battling cancer and other illnesses. These well loved dolls are custom made with the child’s likeness in mind, matching eye and hair color, and replicating the child’s favorite outfit to the best of our ability. They can even be made bald like the child with a little matching wig too! We have over 300 volunteers in 4 countries eagerly making FBF dolls for children in need.

Jars of Hope- Inspired by Caroline
Sending jars of little toys to kids across the US, who are battling various illnesses. Ages 3-12 All inspired by a special little girl that lost her battle to DIPG.

Beads of Courage
Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

Tiny Superheroes
TinySuperheroes is a superhero cape company with a BIG mission to empower Extraordinary kids as they overcome illness or disability!

The Parker Lee Project
Provide needed medical equipment and supplies to families of children with special needs and who are medically dependent.

There are also many wish programs that design wishes, adventures, etc based on a child’s desire and ability. This article is not about those specific programs, but we will post a separate article in the near future that will highlight the various wish programs and provide details on how to submit your child.

Again, if we left off any gift programs that you are aware of, please comment with details below.

2012 Holiday Party

img_0782_19916421052_oOn Saturday, December 15th, 2012 we hosted our first Special Needs Holiday Party

Our friends at Courtyard Austin Northwest Arboretum generously donated space for the party.

We held a book drive and received many wonderful books that enabled us to have gifts from Santa for each of the kids. All books that were not used were then donated to Dell Children’s Medical Center. We have already started to collect books for next year.

Our wonderful music therapist, Danielle with Roads of Connection Music Therapys, led the group in some sing-a-long holiday music. The kids all got to hear their favorites.

Then of course, we had a very special guest – SANTA!

We had such a great time and we are already looking forward to and planning next year’s party. Stay tuned in fall 2013 for more details. We hope to be able to host even more families next year.

Sadly over the years we have lost the photos that were taken for this event. We have a few from our personal photos, but the professional photos have been lost.

How to Reduce Drooling?

Many of our kids deal with drooling and there are lots of different approaches to help. First off however, it is really best to determine where the drool is coming from.

Is the drool from salivary secretions? Is the drool from allergies? Is the drool actually refluxed food? Is the drool not really a drool problem, but actually a tone issue? There are lots of things that lead to what can be considered a drooling problem. Below we will discuss each of these different types of drooling. Before we get into details however, please note that we are NOT doctors. Many of the suggested treatments and medications have side effects. Before taking any medication please consult with your doctor.

Salivary Secretions
Salivary secretions are pretty common with kids that have special needs. There are a few different approaches that are generally considered. There is a medication called Glycopyrrolate or Robinul. This medication will thicken the secretions. For some children this makes it easier to then swallow or cough up. If thickening does not work, there is a patch called Scopalomine. Using the patch for drool is an off label treatment; the patch is intended for sea sickness. The patch will work to dry out the secretions much like an Antihistamine or Diphenhydramine such as Benadryl which are also often used to help dry out secretions. If the medications help, but you need more there are more aggressive treatments as well. Some people have had a lot of success using Botox in the salivary glands. The injections of Botox into the glands can be uncomfortable/painful and requires the child to be very still. Typically the doctor doing the injections will require some form of sedation. There are 2 larger and 2 smaller salivary glands. A doctor may need to do a few rounds of Botox to determine which glands are most active as well as the amount of Botox needed to make a difference. A Botox injections last a few months, this is not a permanent solution. If Botox works well, a doctor may want to remove the salivary gland all together. This is a surgical procedure, but some people opt to so the larger procedure once as opposed to getting Botox every few months. Before a doctor is willing to do this surgery, they typically want to start with at least a few rounds of Botox.

Allergies
If drooling is determined to be a result of allergies there are a few options to consider. You can try things like Antihistamines or Diphenhydramines. There are Guaifenesin (Mucinex). There are many nasal sprays, nasal steroids, and breathing treatments that can be used to help with allergies as well. You may consider trying a vaporizor or a humidifer. If allergies are an issue there are many hypoallergenic products as well including bed linens, cleaning products, clothing and much more.

Reflux
Many children with special needs have reflux. It is easy for frequent reflux to be confused with salivary secretions. Being that there is always saliva in the mouth, it can be hard to determine the difference. Usually doctors will suggest treating salivary secretions first (unless the child has known and/or sever reflux issues). If the treatment is unsuccessful the doctor may then look into reflux as the source. There are many medications available to aid with reflux (some over the counter, some prescription) your doctor can help determine the best one. Just like other medications, it may take a few to figure out what will work and how much/often you need it. In the case of severe reflux a doctor may recommend a more invasive procedure called a Nissen Fundoplication often referred to as a Fundo or Nissen. This procedure will tighten the sphincter making it much more difficult for stomach contents to go back up the esophagus. Many people that get this procedure expect that nothing will be able to pass the fundo. Depending on how tight the fundo is wrapped, it may still be possible for a child to reflux/throw up after the procedure. There are tests to determine if the fundo is in tact, but it is not unheard of. If your child has a fundo and continues (or later begins) to throw up, be sure to let your doctor know. They will most likely want to run an Upper GI or at least get some xrays.

Tone
For children with tone issues (rigid, dystonia or spastic) drooling may be a much different cause. For children that are not able to control muscle movement, they may flex muscles along the throat, abdomen, or even their tongue and jaw leading to increased reflux and/or salivary secretions. Typically all of the above treatments are considered, but depending on the tone of the child some of these treatments may not make much of a difference. In addition to treating the secretions, there are medications and treatments used to help with tone. A common medication used is Baclofen. Baclofen can be given in many different ways. Usually it will start out as an oral/gtube medication or sometimes it can be given under the tongue. If there are good results with Baclofen a pump can be placed into the spine to administer it directly into the nervous system. There are many other medications on and off label that doctors may suggest to help with tone. Sometimes anti seizure medications are used. Sometimes doctors will try anxiety medications (clonazepam, diazapam. ect.). Sometimes you may have a muscle relaxer such as Dantrium suggested. In cases where a child flexes the throat muscles a lot, a doctor may suggest tracheostomy tube to bypass the mouth all together.

This article begins to break down some of the common causes and treatments for drooling. However, there are many more out there. If you have any information you would like to add please feel free to comment and/or email us. And again, we are not doctors. Please consult with your doctor before trying any of the treatments discussed above.

New information shared by a MOM on 11/14/2013:
Did you know that Papaya Enzyme can help your child with CP stop, and/ minimize drooling?!? My daughter has been taking it for 4 years, and yes it works! It’s a simple papaya enzyme vitamin that can be purchased at any drug store. Her neurologist researched and said it was fine. I recently went 2 days without giving it to her. I wanted to see if it was still working, or maybe drooling went away. By day 3, there was drooling spit everywhere, soaking wet shirt! Yes, she’s back on it and her clothes are a lot dryer! She still drools occasionally but, nothing like she does with out the papaya.

School, but My Child is Only 3?!

Many of us come home from the NICU and enter a whole new world. We have countless doctor appointments, monitors, medications, etc. A lot of us also are introduced to a form of early intervention services for our child. In Texas these services are call ECI, each state has their own abbreviation. Early intervention services are often done in your home or your child’s day care. Depending on your child’s needs they may see one to MANY specialists in the ECI program. Specialists are generally therapists, but also include social workers, developmental guides, etc.

We received therapy services in our home shortly after getting home from the NICU. Casey started with physical therapy, then we added speech, vision and eventually occupational therapy as well. After we moved from California to Texas we added a play therapists as well. I had never heard of play therapy, but it’s actually a pretty cool concept.

It took us a few months to get used to having therapists come into our home. Once we got used to it however, they became part of the family. We relied on them for so much more than just their therapy skills. They were able to help us find the best types of toys and adaptive equipment for our child. They were able to help us find doctors in the area that could handle our needs. Some even helped my husband find adult resources when he hurt his back. They also connected us with some local organizations and families.

casey_ECI_gradAround Casey’s 2nd birthday we found out that as of a child’s 3rd birthday they no longer qualify for ECI services. The law states that as of a child’s third birthday they transition to the school district for their services. I don’t know if this is all states, but I know it is most states for sure. It’s hard enough for a parent of a healthy child to send their child off to school when he/she is 5. The thought of sending my child with special needs to school at 3 was just too much for me.

As it turns out, the school does take over services, but in many cases these services can still be done in the home or day care. For some children they enter what is called a special needs pre-school program (PPCD in Texas, each state has their own abbreviation).

We talked with the school administrators and with Casey’s medical team and opted to do Home Bound. Not to be confused with Home School. Home Bound is when a child is not able to attend school (usually for medical reasons). The school will then send services to the child’s home. Home School is when a family chooses to keep a child home and typically (not always) one of the primary caregivers/parents will assume the role of educator. For children Home Schooled there are curriculum guidelines in place for the home educator, but the school is not as involved.

In addition to the people providing the services changing, there are a few other major changes when you transition from early intervention to the school district. We were getting daily written progress reports from the ECI therapists. We could see what they were working on, and how they felt Casey was doing. When we moved to the school services the progress reports are not daily. Instead we get one per semester from each of the different therapists. We have an opportunity once a year (more if needed/requested) to meet with the team to discuss progress, set goals, and work on a plan for the next year. This process is referred to as an ARD in Texas, each state will have it’s own name. Another major difference is that ECI services were all year, the school services work on a school calendar. Children can request (and some will receive) extended school year services, but even those are not all summer. The ECI services are focused around having a child interact with the environment, comfort, and safety. The school is focused on safety and finding ways to get the child to reach their educational goals. Depending on your child these may not seem very different at all, while others may seem like complete opposites.

casey_schoolThe primary goal for the school is to find a way to get your child to attend school, and if possible they want to have your child in a mainstream (inclusive) classroom. What does this mean? Once a child is medically able to attend school, the school will have a few options. The school, parents and medical team work together to determine which of these options is safest and will provide the best environment for the child to learn. This can be anything from the child being completely emerged with other children in the school and using adaptive aids in the classroom, a child being mostly integrated, but being pulled out from time to time to work one on one (or in a small group) with different therapist, a special needs classroom with more teachers/aids to better meet the additional needs of the children. or a more private medically fragile environment where the child has his/her own nurse, and there are only a handful of other students all with similar complex medical conditions. Not all schools offer all of these options. Your district may have your child attend a school not near your home in order to meet your child’s needs. If, for example, your child needs a medically fragile classroom and the district does not offer one, your child may stay homebound, the school may create a medically fragile environment or may be transferred to another district.

Our daughter needed a medically fragile class, and our district did not have one. After a lot of work, our district created an environment based on Casey’s needs. She started attending a couple of hours a week last year. It was very scary to let her go to school. She takes her nurse with her, and she loves it. She gets to sing songs, color pictures, learn about letters, numbers, animals, and all kinds of fun stuff. We still have a hard time leaving her at the school and coming back home, but that’s just us missing our baby. She is growing up and we could not be more proud of her. I just wish we could slow it down.

Article originally written for Preemie Babies 101

Who’s Who?

After having a child with special needs, you will find yourself learning a lot more about the medical field than you have ever imagined. It can be very confusing. Often times you need to see a specialist, but which one? Here is a quick guide that we hope helps to take out some of that confusion:

  • Allergy – Specializing in treatment of allergies. Allergies are a hypersensitivity disorder of the immune system – usually triggered by an environmental substance.
  • Anesthesia – Specializing in sedation, usually in an operating setting.
  • Cardiology – Specializing in the heart and all things related to the cardiovascular system.
  • Cardiothoracic Surgery – Surgery that specializes in heart and cardiovascular related procedures.
  • Dentistry- specialized in prevention, treatment, and diagnosis of diseases and conditions related to the oral cavity (mouth)
  • Dermatology – Specializes in skin
  • Emergency Medicine – Usually found in the ER
  • Endocrinology- Specializing in the endocrine system, related to hormones (often the thyroid or other glands)
  • Gastroenterology- Specializing in the gastrointestinal tract (digestive tract).
  • Genetics- Specializing in genetic markers, diseases, and conditions
  • Hematology – Specializing in blood related issues
  • Immunology- Specializing in the immune system
  • Infectious Disease- Specialize in hard to diagnosis infections.
  • Neonatal ICU (Intensivist)- Usually found in NICU and similar units in hospitals
  • Neonatology- Specializing in neonates (babies)
  • Nephrology- Specializes in Kidneys
  • Neurology- Specializing in the brain
  • Neurosurgery- Surgeon that specializes in brain surgeries
  • Oncology- Specializes in diagnosis, treatment and prevention of cancer
  • Ophthalmology- Specializes in the eyes (can do surgery)
  • Optometry- Specializes in the eyes (cannot do surgery)
  • Oral and Maxi Facial- Surgical specialist for diseases, injuries and defects in the head, neck, face, jaws and the hard and soft tissues of the head and face, part of the dental branch
  • Orthodontics- Additional dental training for aligning teeth and jaw
  • Otolaryngology- All things ear, nose and throat related. Also called ENT
  • Palliative- Specializes in relief from the symptoms, pain, and stress of serious illness
  • Pathology- Specializes in the body’s response to and repairing of injury to cells and tissue
  • Pediatric ICU (Intensivist)- Usually found in PICU and similar units in hospitals
  • Pediatrician- Primary care, specializing in children and babies
  • Podiatrist-Specializes in feet
  • Physical Rehab- Specializes in restoring functional ability and quality of life to patients with physical impairments or disabilities
  • Plastic Surgery- Specializes in correction and restoration of form and function. Not just cosmetic, also reconstructive, hand, burns, cleft, and much more.
  • Psychiatry- Specializes in emotional and psychology disorders, may provide chemical intervention
  • Psychology- Specializes in emotional and psychology disorders, may not provide chemical intervention
  • Pulmonary- Specializes in the respiratory system (breathing)
  • Radiology- Specializes in imaging
  • Rheumatology- Specializes in joints, muscles and bones
  • Urology- Specializes in urinary tracts, and male reproductive systems