Five Nutritional Challenges of Special Needs Children

Some of our children can’t eat all, while others can’t stop eating!

Below are five common nutritional challenges that children with special needs and their families face, along with a few suggestions that may help combat these issues.

1) Being Dangerously Underweight

Some children with special needs are underweight for a variety of reasons.

Some kids are just too sick and/or depressed to eat.

Others may have swallowing difficulties and others still may have metabolisms that burn their calories at a rate so fast that they just keep losing weight.

For these special kids a feeding tube and/or feeding therapy can prove to be life saving and life sustaining.

My initial introduction into what would become the first of many feeding problems for my daughter Bethany, was her total refusal to eat anything after her brain tumor surgery.

For weeks she was totally uninterested in eating anything other than breast milk. She began losing weight at an alarming rate!

Her doctor wanted to insert a feeding tube through her nose and down into her stomach to fill her tummy with life sustaining liquid nutrition!

I was afraid the formula would satisfy her hunger to the point that she would never want to eat again. Thankfully, my fears were unfounded!

After the feeding tube was placed, she gained weight, began to feel better and became interested in eating real food once again!

2) Obesity

Some kids with special needs lead very sedentary lives and as a result become overweight.

Children confined to wheelchairs or those who have limited mobility and can’t get much exercise may have a hard time maintaining a healthy weight.

Getting our kids moving as much as possible, providing healthy fruits and veggies as snacks, and limiting sweets and chip consumption can help inactive children keep their weight down.

Bethany suffered with an extreme seizure disorder and spent twelve years unable to do anything more physically taxing than walking from her bedroom to the bathroom and over to the couch to lie down.

Needless to say, through no fault of her own, her inactive lifestyle caused her to gain some weight.

When a new medication decreased the number of seizures she had, Bethany was able to be more active and it was easier for her to maintain a more healthy weight.

3) Picky Eaters

Many children with special needs, especially those on the autism spectrum and those with sensory issues are extremely picky eaters!

Some children will only eat certain textured foods, while others may only eat foods of a certain taste or color!

With diets like that, malnutrition is a valid concern.

Offering rewards for trying new foods might help.

If you suspect your child’s eating problem is a sensory issue than  a consult with an Occupational Therapist might be in order.

In any event, picky eaters don’t get total nutrition from their food, so they need to take a good multivitamin!

Bethany gets on these month long stints where she eats nothing but one thing over and over and over again for breakfast, lunch, and dinner.

She rotates between pasta with tomato sauce, bean tacos, salads, and just plain old cucumbers!

A multivitamin and mineral supplement is a must in order for Bethany to be as healthy as possible!

4) Medication side effects

Many of our children with special needs experience medication side effects that can cause increases or decreases in their appetites.

If you suspect that a medication is causing your child’s eating challenges, I urge you to research all possible side effects and report your findings to your child’s doctor.

It may be that another medication can be substituted.

Unfortunately though, sometimes doctors believe the benefit of a medication outweighs any side effects it may cause.

If your child is in this situation, keeping him or her as active as possible and providing low calorie meals and snacks is your best bet for managing medication weight gain.

Topamax, one of Bethany’s seizure medications, literally made her stop eating. She lost so much weight that she became dangerously thin.

So we tried switching her medication to Depakote, which then made her gain so much weight that she was well on her way to becoming obese!

We had to switch her to yet another medication which thankfully helped control her seizures as much as the others had and did not effect her appetite at all!

5) Genetics

Some specific disorders in and of themselves can cause nutritional problems for kids with certain conditions and place them at a higher risk for obesity.

Among such disorders are: Down syndrome, Spina Bifida, Autism Spectrum Disorder, Prader-Willi syndrome, Cohen syndrome, Carpenter syndrome, Borjeson syndrome and MOMO syndrome.

For disorder specific nutritional challenges, I would suggest googling and consulting with your child’s doctors and therapists.

Whatever our children’s specific nutritional challenges may be, I cannot stress enough the value of keeping our kids as active as possible, filling them up with healthy fruits and veggies and keeping track of their calorie consumption!

The Power of Food – The Wonders Lurking in the Spice Cupboard!

The difference in my little boy is staggering; his weight gain has been phenomenal to the point where he is now a healthy weight/height for his age and is back on the growth chart where he should be!

He is healthier and happier than he has been in years.

We keep his immune system strong by giving him a wide range of fruits and veg, making sure his vitamins and minerals are in the right range, thanks to his dietician, who has gone above and beyond to confirm that his meals are absolutely, perfectly meeting his needs.

He has different herbs and spices renowned for their dietary/health properties.

The favourites being garlic, ginger, cinnamon, oregano and the spice that above all other things turns his tube yellow… turmeric.

I know the power of a healthy diet.

I know the power of herbs and spices to help us keep well and indeed to fight off infection.

So WHY I ask you, do we as parents and carers not put in as much effort and consideration into our own diets?!

I am pretty certain that I am not alone in making sure my child has the best diet imaginable, while I eat rather less well, shall we say.

Too many years of hospital visits relying on Costa, pre-packed butties and cola?!

I really should pay more attention to my diet too.

As a woman with autoimmune issues its more essential than ever that I keep myself as well as possible.

Recently, after many years of suffering in silence, I was diagnosed with a rare autoimmune disorder that conventional medicine can’t really help with, other than to give antibiotics when the inevitable infections take hold.

If this were my son we were talking about, I would be doing everything in my power to ensure that he was healthy and that we found a way to control the condition.

So the time has come for me to practice what I preach!

I will admit, the first thing I identified as a major problem for me was gluten.

I don’t have a coeliac allergy, but it was very noticeable that if I ate gluten, within 24hrs I was in pain with a flare up.

So taking what I’ve learnt over 12 months of doing a blended diet for my son, I cut out all gluten. Totally.

Caffeine was another one to go (although I haven’t quite managed to fully remove that one as yet… my morning brew is still an essential).

Then, I turned to the spice rack that has, for the past year, helped keep my boy healthy.

Turmeric is would appear is a potent anti-inflammatory.

Coconut oil is renowned not only for being a very healthy oil to cook with but also for having anti-fungal and anti-bacterial properties.

After a few weeks on antibiotics, feeling utterly meh and having flare-ups despite the medication, I was prepared to try ANYTHING regardless of how weird and wonderful it sounded!

Both can be used internally via diet but also externally… as its my skin that’s worst affected I was happy to slap the stuff on and deal with the glorious yellow tinged skin that resulted… but it calmed my skin down a treat.

I also tweaked my diet and added such beauties as these in on a daily basis (although I found taking turmeric in capsule form rather better than the Bart Simpson look). 

A week on and I’m feeling better than I have in a long time, pain level is down (not gone I should add, and I did this with the full support of my GP), and the inflammatory responses that have plagued me for years are a lot calmer than they were.

I am actually speechless.

How ridiculous, to have had these items sitting in a cupboard for the past year, regularly being fed to my son, yet I never even considered their usefulness for my own wellbeing.

If it hadn’t been for Sam being a tubie, I doubt I would ever have even thought about them.

Hippocrates was spot on; let food be your medicine, and medicine be your food.

Inspirational Quotes for the Special Needs Parent!

On the other hand, being the parent of a special needs child can also be fun, happy, exhilarating, invigorating, energizing, exciting, fantastic, and amazing!

Special needs parents live their lives on an emotional roller coaster.

When things are going good and our kids are happy and healthy we have our mountaintop experiences.

At other times we may find ourselves down in the lowest valleys.

Sometimes we need a little help climbing out of our valleys of despair and despondency and for that very purpose, I’ve put together this little list of 15 inspirational quotes for special needs parents. Some of them are even my very own quotes!!

“Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.”- Author Unknown

“Some of our kids got a bum deal in life and I know it might seem impossible, but try as hard as you can to turn your child’s crappy into happy”- Sylvia Phillips

“As special needs parents we don’t have the power to make life, “fair,” but we do have the power to make life joyful.”- Author Unknown

“Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s going to be a way through it.”- Michael J. Fox

“Every tiny little step forward is a major accomplishment to special needs parents and cause for celebration!”- Sylvia Phillips

“Life is tough, my darling, but so are you.”- Stephanie Bennett Henry

“Listen to the experts. Glean what works for you and your child, but remember, ultimately, you are the expert on your own child. No one else.”- Sylvia Phillips

“We must be willing to let go of the life we have planned so as to have the life that is waiting for us!”- E.M. Forster

“Buck up, Buttercup”- Author Unknown

“Celebrate and cherish all of life’s ordinary, everyday, precious little moments” -Sylvia Phillips

“People with special needs are not as different from you and me as you might think. They want the same things we want: to love and be loved, and to be accepted, appreciated, and included.”- Sylvia Phillips

“Knowledge of what is possible is the beginning of happiness”- George Santayana

“Hang on tight and get ready for the wildest, saddest, happiest, most challenging and most rewarding ride of your life!”- Sylvia Phillips

“In the end, I am the only one who can give my children a happy mother who loves life.”- Janene Wolsey Baadsgard

“Always hope for a miracle, but don’t ignore the reality of the situation.”- Sylvia Phillips

The Beauty of Inclusion

My daughter is five years old and she attends school in a PMD (Profoundly Mentally Disabled) classroom environment.

I have blogged before of how the label of PMD was originally very difficult for me to accept. If I had to label her, I would label her as beautiful, happy, determined and inspiring. 

The name of her classroom is really quite deceiving. When we walk through the door, we are greeted by the wondrous sight of interactive learning, friendship and joyfulness.  

There is a plentiful array of special equipment to help her and her equally amazing classmates to reach goals. It’s obvious that goals and achievement are very important there. 

Music fills the room and creates a light-hearted and cheerful scene. Her loving teachers give the atmosphere a warm and secure feel.

While I love this enriched classroom, and see it as her perfect safe haven, I also love the opportunity that she has each day to spend time with a typical kindergarten class.

I have watched (with my heart bursting) kindergarten students competing to be my daughter’s “buddy.”

They help her participate in Music, Art, Physical Education and other activities that are part of the typical school day experience.

She is nonverbal, but it is truly magical to see the interaction that takes place between her and these students.

It doesn’t matter to them that she is in a wheelchair.

They want to push her in her chair and help her roll a ball…. They laugh with her…They tell her they love her sparkly shoes….They encourage her.

They are imparting skills and providing immeasurable teachable moments for her. All the while, she’s unknowingly teaching them valuable lessons about life, friendship and strength.

It’s clear to see that the interchange between them is mutually rewarding.

When I was in high school, I had the honor of working with children with special needs. The experience has remained with me throughout my life and the lessons I learned from them had a tremendous impact on my heart.

By allowing typical children to spend time with children with special needs, I believe that kindness and compassion are strongly ingrained into them, and it builds upon their character.

Children aren’t judgmental at that young age.  I firmly believe that opportunities like this promote sound character traits that carry on with them into adulthood.

Being embraced and included by these kindergarteners, my daughter is not treated as inferior.

She is treated as a peer and as a friend.

The great beauty of inclusion is that remarkable abilities are realized and treasured relationships are formed.

I am very grateful to her wonderful teachers and to the caring Kindergarten teacher who promote this idea.

They may not realize it, but their actions are changing the world little by little, and making it a better place.

8 Tips To Help You Get A Good Night’s Sleep

Through my own mission to get good quality zzzs, I have collected a selection of tools that really have helped me. They might be obvious, but in your sleepy state they may not be at the forefront of your mind.

Feel free to use one or all, building it into your day.

It only takes a few minutes and could work wonders!

1. Eye Eye Captain

An eye patch can really help to shut out the world and calm down your brain in order to get to sleep quickly.

This is particularly relevant at the moment with all the light evenings and early mornings.

I wear it every night without fail.

2. Crank Up the Routine

Whatever time you are going to bed at the moment, give yourself the best lead up you can.

This doesn’t have to involve elaborate rituals, but winding down at least one hour before getting into bed including no caffeinated drinks or stimulating activities can really help to get you off to slumberland.

3. Be A Bit Boring About Bedtime

To really get your body in the sleep groove, go to bed at the same time every night, even on weekends.

If you are getting up in the night to take care of your child, it is an idea to go to bed early.

Give yourself as much chance to fill the sleep tank as possible.

4. Drink A Sleepy Blend or Milky Drink

I’ve tried a few of these. Good old Horlicks is calming, warm and lovely.

I have also been trialling some sleep infusions. Sleep Easy and Snore and Peace by clipper are fantastic.

They have a lovely blend of lavender and chamomile as well as things like orange and cinnamon. The aroma really helps to relax down too.

5. Hot Shower or Bath

As a parent, I don’t get time to have a bath before bed now, but scientifically it is a very good sleep aid.

Our bodies have an internal thermostat and once it cools down it acts as a sleepy switch.

Instead of a bath, I now have a very quick hot shower before bed, it really works and is very relaxing!

6. Pillow Spray/Candle

Before getting into bed I lit a lavender candle for a while until I had finished reading. It really helped me to feel relaxed and definitely helped get me to sleep.

The problem was I couldn’t keep lighting it when I woke up in the night. Instead I ordered a pillow spray from This Works. And it really does!

Just inhaling the waft of a few spritzes has me falling into a deep sleep. If I wake in the night I give it another spray and hey presto!

7. Read the Psalms

Reading these can bring great encouragement and comfort; here is a link to pick one out.

Psalm 4 or 23 are especially recommended.

You have put more joy in my heart than they have when their grain and wine abound. 
In peace I will both lie down and sleep; for you alone, O LORD, make me dwell in safety.”
Psalm 4:7,8

8. Read a Few Pages of a Book

Even if it’s just five minutes – this can also help to take your mind off the day and transport you somewhere else.

This distraction can really help your brain to wind down.

 

To quote Dr Weissbluth, the most important goal is a well-rested family, and hopefully these tips can ensure you can get to sleep too!

Holidaying… With A Tubie

It is also our first time staying in a caravan (granted, a posh one) with Sam and only the second time we’ve been away since he had his PEG fitted.

Now, formula isn’t an issue as we just need to make sure we have sufficient sachets to make up his milk… the blended diet aspect however is requiring rather more planning. 

Think of it as a week-long picnic, but with the planning involved for a small military campaign…

The prospect of making up enough blended feeds for a week plus transporting them from one end of the country to the other does not fill me with joy.

Currently, Sam’s feeds are done in batches; each recipe is then split into the correct portion sizes to give him around 250 calories per portion.

Sam CAN taste his meals even though they go straight into his stomach (think burping… sorry), so we try and give him different meals for each feed so he doesn’t have a whole day with just one blend.

Like anyone else, he’d get very bored, very quickly.

Usually we use storage pots into which we portion up the blends, cool them and freeze, labelling as we go.

This also means that a week’s worth of blended meals will take up considerable freezer space, which we simply won’t have in said caravan.

Hmmm . . .

As the prospect of carting our beloved vitamix with us fills me with dread (have you seen how expensive those things are, not to mention the amount of power they use!), there has been some considerable research done into alternatives… unfortunately none of the options are going to be suitable for us.

A lot of families use the reusable, sterilizable baby food pouches, but the volume of Sam’s meals means that these aren’t big enough.

Knew it wouldn’t be that simple!

Another alternative option was a nutri bullet type blender that would be fine for smaller batches… however as money is tight that isn’t an option either.

So… not so much back to the drawing board as back to the vitamix.

Yes folks, you’ve guessed it, it’s coming with us.

So if the news reports a black out across a caravan site in Devon next week, you’ll know who’s to blame! x

Tube vs Food: Are We Making The Right Decision?

He was weak and tired and needed it to be just a little easier to get milk. After trying everything we had to get him on the bottle for his health, his jaundice was very apparent and he was sleeping a lot.

Once he got the knack of drinking from a bottle, there was no stopping him, he was a greedy boy, nothing pleased me more than giving him a bottle and having to up the ounces so quickly.

Very soon it was the next stage! FOOD! And didn’t he just love it!

There was nothing Zachariah didn’t like, he would eat and eat and eat. I was so pleased to see him enjoy the adventures of food.

But then there was the drink, I tried to give him bits of water from his bottle, but he would struggle so much, he would gag and cough and almost choke from little bits of water.

I put it down to it being a different texture to milk, it was fast flowing and he would get used to it.

At seven months old he was referred to a Speech and Language Therapist. Who knew that they specialised in feeding as well as communication?

I remember feeling rather confident attending this meeting, as this was Zachariah’s strong point, he was good with his grub, and this was time for him to go to an appointment and show off his skills.

However when she watched him eat she was concerned, she started to talk about aspiration and a videofluoroscopy. What is she talking about?

This was the start of something else, another issue to to worry about, someone else to come to our home monthly. I was gutted.

The therapist started her visits and taught me how to feed Zachariah the safest way, he was introduced to thickener to allow him to have fluids and had to stick to a blended food diet, he tried little bits of toast and soft snacks, but it was just not worth it, it was such a hazard as he would gag and struggle.

He had a videofluoroscopy which showed he was aspirating and that concluded that it would be much safer for Zachariah to be tube fed. I was devastated. 

I didn’t really believe it, my little boy who loved food so much would have it taken away and have it pumped straight into his tummy instead.

His favourite part of the day was being ripped away!

At first we refused, said no to his consultant and no to the surgeon, we couldn’t give up on him yet.

A few months passed and it was clear that Zachariah was only struggling more and more, it wasn’t worth the risk anymore. I just wanted him to be safe.

I started to look at the positives, that he would have stress free days fighting with food when he wasn’t feeling great, he would get all of his medication as he wouldn’t be able to spit it out, and he would have more time for fun and therapy.

So now it’s the waiting game for his date to go and have a gastrostomy, and all I can question is whether or not we’re making the right decision!

I love my Boy!

Rochelle, Mummy to Zachariah. Xx

Recipe For Weight Gain: Strawberry Banana Smoothie

If your child needs more calories, your healthcare provider may suggest adding more high-protein and high-fat foods and beverages.

Smoothies can be a great way to add more calories and protein to your child’s diet.

They can be served as part of a meal – with buttered toast for breakfast, for example – or as a mid-day or evening snack.

Strawberry Banana Smoothie

Ingredients:

½ cup whole milk
½ cup plain whole milk yogurt
½ cup frozen strawberries
1 banana
1 tablespoon ground flaxseed

Instructions:

Mix all ingredients in blender and serve.

Ideas For Your Special Needs Summer Picnic

In the spirit of childhood experience and family participation like a moth to a flame; there you are coordinating and planning a summer picnic.

Here are some great tips to help make your picnic easy, fun, enjoyable and accessible:

Picking the seating option for your picnic is the first step. 

Do you want a picnic table or are you going to be laying out a lovely blanket on the ground? 

For those seeking a great accessible picnic table for children who use wheelchairs, the Convert-a-bench is a fantastic option.  Retailing at around $100 each this piece of outdoor furniture does just want the name suggests; converts from a outdoor bench to a picnic table (single) or if you combine two – it makes a typical picnic table! 

If you use only one as a single it provides for easy roll up for a wheelchair to join the table!  Perfect for home use or family summer gatherings. 

Picnic Blanket

For those of you wanting to enjoy the picnic blanket experience a fantastic blanket is an extra large waterproof backing with fleece top provides a great soft sensory experience that will also make sure that you can enjoy your picnic without having to worry about how wet the grass or ground might be.

An extra-large blanket will also give you plenty for room for your picnic feast and allow for additional room if you’d like to pair the Go-To Seat and floor sitter on your blanket top surface for your child with special needs.

For a traveling picnic a picnic basket on wheels is a must!

For that traditional picnic feel you may want to consider a wicker picnic basket on wheels.  Certain baskets come with silverware, dishes, cutting board, salt and pepper shakers, wine glasses and napkins which make your picnic needs complete.

Retailing depending on style from $150-$200, this choice is a bit more of a summer time investment.

For those wishing for something a little less expensive there are so some great cooler options that are on wheels retailing for around $50 and allow you to bring your own silverware and plates from home.

Tablewear

Considering little details on how to make your picnic extra special for your child with special needs consider cutlery items and dishware that would be fun and functional.

Both the ez-pz mini-mat and EasyHold products are excellent choices for children working on independent and caregiver assisted feeding.

The ez-pz mini mat retails for $19.99 and is great for picnics and home use:

EasyHold 5 piece pack retails for $34.99.

Both of these items pair well for items that are small and pack well for picnics on the go.

Plan your menu to be easy! 

Avoid messy, difficult, complex foods. 

Simplicity at a picnic can ensure a stress free and fun experience. 

Plan finger foods and plan for your child’s dietary needs and carry some wet wipes to assist with easy clean up. 

Whether you pick your peaceful patio, a grassy park filled with trees for a gentle breeze, or a sandy beach, a picnic is the perfect way to unwind and enjoy each other’s company.