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

Go Bags for Children with Special Needs

When most people hear the term “Go Bag” they think of either doomsday preppers or pregnant women.  These are both types of go bags, however, this article is referring to another type of go bag- “Go Bags for Children with Special Needs”.

A go bag is exactly what it is sounds like.  A bag that you can grab and go at a moments notice (whether that is the end of the world, delivery of a new baby, or leaving the house – or room- with a child with special needs).

There are a few items that we all need, regardless of our child’s special needs:

  • A change of clothes is always a good idea
  • Any type of hygiene products are a must (toothbrush, soap, etc.)
  • Diapers and wipes
  • Something your child enjoys (books, games, music, etc.)
  • Comfort items (blankets, pillows, stuffed animal, etc.)

There are some emergency items I suggested as well:

  • Ambu Bag
  • Alcohol Wipes
  • Gloves
  • Replacement Gtube (the replacement kits usually include syringe, gauze, extensions, and everything you need – minus the water)
  • Replacement Trach (the replacement kits usually include syringe, gauze, extensions, and everything you need – minus the water)
  • Small First Aid Kit
  • Water
  • Epipen
  • Seizure Medications
  • Heart Medications
  • Benadryl
  • Pain Relief (medications, heat, ice, pressure)
  • Flashlight

Of course if your child does not have a trach, gtube, seizures, etc. you will not need to pack ALL of these items.  Pack what pertains to your child.

Now that you have your basics, and your emergency items, you need the items you need/use every day.  Each person decides how much they need/want pack (a full day, a few hours, weeks. etc.).  If your child receives home health, some companies do have requirements for go bags.  You may want to check with your provider if you are not sure.

To pack for your needed and used items there is a simple little trick.  Grab an empty bag, box, or whatever.  When you go to bed place that empty container in a central location in your home.  The next morning as you go through the day grab double.  What does this mean?  Well, lets say your child is gtube fed and on formula.  In the morning you may get a new feeding bag, can/bottle of formula, and clean the extension.  Grab an extra bag, extra bottle, and an extra extension.  Stick the extras in your empty container.  As you go through the day and use more items, continue to stick the extras in your container.  Depending on how many bottles of food (and other items) your child goes through you may decide to  pack your bag for more or less time.

At the end of the day you will have a pretty full container.  You are not quite done.  Before packing these items into your go bag, make a list.  Next to each item write down not only the quantity packed, but also if there are any expiration details.  Most medications and/or food do expire.  Some require refrigeration (refrigerated items are typically not part of the go bag).  You will want to be sure to cycle out the items before they go bad, so keep the list handy as a reminder.  Maybe stick it to your refrigerator or someplace you will see it often.

As you go through the day you will notice some items that you may reuse over the course of a week or month (suction tubing, syringes, medicine cups, etc.).  You should grab at least one of each of these for the bag as well.

You are almost packed, just a few more things to do.  POWER!!!  Many of our kids devices require power.  If you are able to have extra chargers- add the chargers to the bag.  This is not usually the case.  If you do not have extra chargers, be sure to put something on the outside of the bag reminding you to grab the chargers (and keep them close by).  A car charger is always a great idea as well (if possible).

If your child has an advanced directive or other legal papers, you will want to keep copies in the go bag.  I suggest also keeping a copy of all the medications, providers, and major medical history in the bag.  You can use our Medical Forms template to create a quick and easy print out of this of information.

gobagThe go bag we use has multiple pockets.  I used a label maker to organize the bag.  It’s easy to know exactly where certain items are when I need them.  Most zippers have a loop or hole on one end.  You can loop the label through this hole and back onto itself.  When you need an item from your go bag it’s usually something you need urgently.  The last thing you want to do is spend time searching through all of the pockets.

Depending on your child, you may need to keep this bag at arms length at all times.  We personally keep it handy (near the front door), but we only take it with us when we will be gone for more than hour from the house.  I know many people that take it from room to room as they move around with their child.  Everyone will have their own comfort level when it comes to their go bag.  A go bag is a very necessary item for any child with special needs.  You will find as you pack your bag there will be some items you won’t be able to go without, while others you may not ever need.  It is always better to have them and not need them- than to not have them when you do need them.

How can I increase the calories in my child’s diet?

foodThere are many ways that one can increase calories. Before using any of these tips however, you should talk with your child’s doctor or dietitian to make sure that these are safe for your child.

There are 2 categories.
Food/Natural Substances (things you can go to your local grocer or vitamin shop to purchase)
Medical Interventions (these typically require a prescription and if not covered by insurance can be very costly)

Food/Natural Substances
Some items that we can add to our child’s food/formula that will add calories are the same things that we all love and avoid to prevent those extra pounds. Heavy cream, olive oil, butter, gravy, avocado, and ice cream to name a few. A small amount of these can add a lot of calories. These are empty calories. The calories you get from adding these will not help with your daily nutritional needs. You will need to be sure that you are giving a complete formula (or balanced diet) and/or vitamin supplements in addition to these items in order to insure your child is getting the nutrition that he/she needs.

Medical Interventions
Before using any type of supplement and/or medical intervention to add calories, we can not stress enough how important it is to work with your doctors. Some of these items are available without prescriptions, but to insure that they are used properly and safely for you child, a doctor needs to be involved in the dosing and creating a usage plan. Some of these items are things like Scandishake, Duocal, Pediasure Sidekicks, and many others.

References:
Hand to Hold- Lunch and Learn material created/shared by dietician Leslie Ivy – High Calorie Baby Foods
Hand to Hold- Lunch and Learn material created/shared by dietician Leslie Ivy – High Calorie Recipes

Party Planning for Kids with Special Needs

IMG_1748Planning a party for any kid is a lot of work.  Planning a party for a child with special needs can be extra tricky.  It can be done though.  Each year I work very hard to try to come up with a wonderful birthday party for my daughter.  Over the years I have come up with some great, very accessible, party ideas.  Hopefully these ideas, and some Special Needs Party Planning Rules I have come up with will help others planning a party for their child with special needs.  This is just a few ideas, there are tons more out there, but this list should get you started.

Arts & Crafts Party-
Boys and girls can both have a lot of fun at an arts & crafts party.  You may have to recruit some help for kids with limited mobility.  Our daughter loves arts & crafts, a lot of the time she is just saying yes to the details and/or placement of things, but she loves to be part of creating something.  We did a princess craft party for her once.  Her and all of her friends made princess tiaras.  They had a great time.  We had lots of other things planned, but they all were having so much fun the entire party was spent at the craft table.   Boys could do something like pirate hats, or treasure chest or maps.  The list of arts & craft themes is limitless.  Just take what your child is into, and Google that topic with ‘Arts and Crafts’ you are sure to get a bunch of ideas returned.  An added bonus is that the crafts they make can be the party favors.  You don’t have to waste time and money on goodie bags that just end up being tossed later anyway.

Movie Party-
Not all theaters are willing to do this, so you may have to do some homework on this one.  If your child is into movies, you can find a theater that will let you have the entire theater for a showing.  They will usually work with you to make it quieter, brighter, etc. as well.  The trick we have found when we did a movie party was that to get them to be flexible without having to spend a fortune, we had to be flexible on the day and time.  It was worth it though, everyone had a great time.  We have a luxury theater in town that only seats 40, but the seats are extra big.  We are able to put a tumble forms with wedge in the seat, or her bean bag chair.  The lobby is nice as well for doing pre-movie parties.  If you have an iPic or similar style theater near you, it worked great for accessibility.

Sing-A-Long
Many music therapy centers offer parties.  The fee is reasonable (in most cases) and if your child is into music, this can be a great party idea.  The therapist will get everyone involved, there is dancing (for those that can dance and move) and singing (or just making noises).  A great idea is to get the song list ahead of time.  For not much money you can get blank CD’s and burn the song list for all the kids coming to the party.  You can make and print out CD jacket covers too.  Maybe something like ‘Casey’s Party Mix- 2012’.   If you don’t have a music therapy center, you may be able to get a music therapists to come to your own as well.  You can tell the kids coming to bring their favorite noise makers with them.

Story Time
Many book stores have story time.  Some have party rooms as well.  If your child loves stories, start calling your local book stores or libraries.  You can rent the party room and invite the kids in for story time.  We did this recently and the kids had a blast.  In addition to story time, they were also able to make bookmarks.  The store we used had party bags for the kids, but before I knew this I was working on writing up a little story just for my daughter about a birthday princess.  I was going to have it printed and give that as a favor to the kids.  You can do something like that pretty easily.  I found some calendars in the dollar bin that had wonderful pictures.  I then cut the pictures out and used them as a base for my story.  You can scan those into your computer, or use drawings from your child.  Then there are some sites that will do professional printing/binding.  Or you can use Walgreens for nice but not crazy expensive.  There are lots of ways to print it out yourself at home too.  At craft stores you can find lots of affordable ways to create your own book.

Parks & Playgrounds
Many cities/towns are building accessible playgrounds now.  Search for accessible playgrounds in your area.  These are great places to plan parties.  I would suggest going ahead though, and making sure there is a place out of the weather in case your child needs a break.  I would also suggest making arrangements with the city.  Some cities require this, but required or not, it is recommended.  They can reserve the area for you so you don’t have to worry about kicking other people off the tables.  You can usually hire face painters, balloon animal clowns, jugglers, or whatever your child would like to see to meet you in the park.  Balloon animals make great party favors too.

Home Party
There is never anything wrong with a traditional party at home.  Invite friends and/or family and just focus on doing the things that make your child happy.  Even if that means watching a movie on tv, or just relaxing and being around loved ones.  A party does not have to be action packed.  Some kids prefer and thrive on quiet, controlled environments.  If that is your child, do force them into a party because that’s what you think you have to do.  Make sure their birthday is special, but don’t make it torture.

Virtual Party
Unfortunately, some of our kids spend birthdays sick and/or in the hospital.  That doesn’t mean they shouldn’t get a special day.  Hospitals are usually great about helping decorate the rooms (nurses are often very creative).  If your child is in the hospital, or too sick to be around others, have all of your family and friends take a picture.  Pick a theme (wearing silly hats, making funny faces, holding a stuffed animal, whatever).  Get them to send those pictures to you (email or printed).  Then on the special day show the pictures to your child and let them see how much everyone misses them and wishes him/her a special birthday.  If you have enough time you can even put them all together with the birthday song (or any song) and make a little slide show for your child to enjoy.  Or if your child is more responsive to sound, instead of pictures, have everyone send a voice message.  There are lots of ways you can safely celebrate your child’s birthday and include loved ones, without ever leaving the house or hospital.  My daughter loves when her friends make her pictures to hang in the hospital room too.  Personal touches like this make any day brighter, especially birthdays.

Regardless of how you celebrate your child’s special day, be sure to do something.  Just because our kids have special needs, does not mean they don’t still need to be kids.  They deserve a day all about them, and what makes them happy.  In my opinion, they deserve a lot more than just a day.  Here are a few rules to follow when planning a party for your child with special needs.  Hopefully if you follow these rules, everyone will have a great time.

Rules:

  1. Don’t worry about what all of the other kids are doing for their parties, focus on what your child likes.
  2. A party does not have to follow a preset agenda.  Have enough things planned to fill the time, but if an activity runs long and people are enjoying it, be flexible.  You can always save the items you don’t get to for another day.
  3. Don’t focus on food.  Many special needs kids have special diets.  A lot of parties and holidays focus on food.  If you have a child that cannot eat cake, don’t center the party around the cake.  You can still have one for everyone else, and sing happy birthday, but don’t make it the focal point of the event.  Also, if other children with special needs will be attending, it is a great idea to let families know in advance what foods and drinks you will have.  This will give others warning in case they would prefer to bring their own snacks.
  4. If your child is hard to buy for, be sure to either provide guest with some ideas, or request them not to bring gifts at all.  Many parties have started collecting and making a donation in the child’s name instead of bringing gifts.  We don’t do gifts because in addition to being hard to shop for, our daughter is not physically able to open the gifts and her and her special needs friends are not able to stay focused on watching me or her dad open her gifts.  We would much rather use the party time for things she and her friends enjoy.
  5. Time!!!  If your child is not able to tolerate long periods of time, there is nothing wrong with having a party for only an hour (or whatever works for your child).  It’s much more important that your child has a wonderful hour, than a good one followed by 2 painful hours trying to calm them down.