Don’t Talk with Your Mouth Full!

There was a time when I could not imagine I would ever say this to him.

Garrett began speech therapy before he was two years old, right after we received his diagnosis of Smith-Magenis syndrome (SMS). Speech delays are a common symptom in children born with SMS.

I wamp, wamp, wamp!

He used to choke so easily. From a young age, soft baby food like applesauce would cause him to gag.

By the time he was five, my husband and I were experts in the Heimlich maneuver. He never had a lot of interest in eating.

He would drink enough milk to float a ship, but we could not get much real food in him. I assumed that was because he had such trouble swallowing.

We bought fortified drinks like Boost to make certain he was receiving enough necessary nutrition.

No!” I looked over at Garrett from my usual spot in front of the dishwasher. “You cannot talk until your mouth is empty.” And now, in the teenage years, meals at our table resemble feeding time at the trough.

In the early days, I would take Garrett to one of his different therapies: speech, physical and occupational each week.

It wasn’t too difficult at first.

When Garrett was two, our second son Patrick was born. We had to purchase a double stroller because Garrett was still so wobbly on his feet. “ wamp wilk.”

At first, the speech therapist just worked on trying to get Garrett to blow…blowing bubbles from a wand and blowing pieces of paper across the table with a straw.

Your mouth still has food in it.” After our third son Brennan was born, juggling three kids in a two seat stroller was a real circus act.

But, I dragged all three of them in and out of the therapy appointments; hoping that all the exercises and activities would help Garrett to reach his full potential.

Another struggle we had was getting him to brush his teeth.

Garrett was very defensive when it came to anything touching his mouth. At the end of each speech therapy session, the therapist would put on a glove and massage the inside of his mouth. Garrett hated that! And I do mean HATED! “I ed I wamp wilk!” I had enough.

I put my dishcloth down and stood over Garrett’s chair. “I said you cannot talk with your mouth full of food. It is rude. And gross. Do NOT say another word with your mouth until it is empty!” I turned back around just as Garrett knocked on the table.

I spun back towards him prepared to begin a real LONG lecture.

And just then, Garrett pulled out another activity the speech therapist taught him: sign language. “I” ….he signed the letter “i” up to his chest. “Want”…his very first sign. I believe it took him all of 3 seconds to learn it. “More”…I had completely forgotten this sign.

We had not used it in almost a decade. “Milk”…this sign is the motion one would make while milking a cow.

And Garrett makes it with all the gusto of “eight maids a-milking”.

Please”…we had not learned the sign for please.

What a statement of our parenting! But, once Garrett began talking, we did teach him the phrase “I want” always ended with “please”. Since he could not speak, Garrett made up his own sign for please: he clasped his hands in a begging motion and held them under his chin.

Well, he didn’t say another word,” Patrick walked by just in time to point out the obvious.

What else could I do? I filled up his glass. “Thank you,” Garrett signed. “You’re so welcome,” I answered.

 

Of Penny Pinching and Asking for Help

The financial pressure on charities means that most are now means test, and will only be able to help if you earn below a certain threshold.

However there is help available if you know where to look for it.

1. Know your tax credits – Even if the answer is no, it pays to find out… we didn’t think we were eligible but we are, for child tax credit due to the severe disability element.

So, apply.

2. Don’t be too proud or ashamed to ask for help – charities are there to support families like ours, if your child needs something and you can’t get funding anywhere else, find a charity who can help.

3. Apply for DLA, and don’t be afraid to appeal a decision if you disagree with it – the DLA form is, I grant you, hideous.

Even the helpline staff agree that its hideous!

And its tough as Hell having to write it all out in black and white but it really does take a strain off you financially.

For years, we assumed we couldn’t apply to charities like Family Fund because we weren’t getting child tax credits.

It was only after a chance comment by another SN mum and friend that made me look again at the awards letter; we’re paying off an over payment made in error y’see, so don’t get a penny in tax credits… but there it is, in big letters on the front page – we ARE eligible, it’s just that the money goes to pay off the over payment.

But after double checking with FF we are indeed eligible.

Don’t fall victim to assuming that you can’t get any help or support because you earn a set amount or because (like us) you don’t think you’re eligible – one thing I’ve learnt from having Sam is that there is a phenomenal amount of good in this world, and the number of people who want to help are far greater than you could have imagined.

Don’t struggle on in silence – if the OT or PT says your child would benefit from x, y, z piece of equipment but the local authority etc can’t fund it, don’t assume that its hopeless and you’re child will suffer because they don’t have to 🙂

The help is out there, we just need to ask x

When Your Child Doesn’t Like to Touch

“They do this thing” I gushed. “Where they grab your finger with their whole hands and they don’t let go.

That is their way of saying their first hello, they are pleased to finally meet you and that they love you.” “Wow,” they replied. “

All that from touching you?”

“Yes – all that from touch.”

Touch. It is quite powerful really when you think about it.

It is the first unspoken conversation with your child.

It can comfort in the dead of the night.

It can soothe away an ache. It can reassure them as you walk through busy streets.

It can applaud them with a single pat.

It can express your love when no words come close.

But what happens when your touch means something different to your child?

When a stroke of their arm fills them with fear?

When an offered object is viewed with distrust?

When an unexpected brush of a sleeve can make them fretful?

When simple every day activities can send them into “fight or flight” mode?

Tactile defensiveness is part of sensory processing disorder.

This is when a person finds it difficult to process and act upon information received through the senses – sights, sounds, touch, tastes, smells, movement and balance, body position and muscle control.

The SPD Foundation indicates that 1 in 20 children experience symptoms of sensory processing disorder to an extent that it affects their ability to participate in everyday life.

In my son’s case his inability to explore his environment in a typical way due to his hypotonia (floppy muscles) affected his brain’s interpretation of touch.

This tactile defensiveness makes him feel overwhelmed and for the longest time he avoided touch when possible.

For a while there he didn’t even recognise his hands as his own as they received so little feedback from the world around him.

Over time his hand use has improved but hand function still remains the most delayed part of his development.

We have consulted with both NHS and private therapists about ways to improve this and received many useful suggestions such as:

• Using a vibrating hand massager to stimulate the senses

• Tapping the hand and reminding him that this is Gabriel’s hand

• Introducing different tactile stimulations slowly over a period of time

• Using deep pressure on the hands instead of a light feathery touch

• Messy play with foam, sand, water and food.

All has helped at different stages – the most dramatic being the hand massager in the earlier years.

After a few seconds stimulation he could tolerate holding a previously shunned small object.

Now he will flick everything he comes across, tentatively at first, then as he grows more comfortable with the item he will explore and experiment as any toddler would.

How we rejoiced when he reached into a toy box to pull out items and cheered as he used his hands in propel himself around the house in a nifty bum shuffle.

The most wondrous moment by far though was the first time he reached out with his tiny little hand and rested it on top of mine.

I hadn’t realised what I had missed out on in all those years.

Couldn’t have known how huge this gesture would be. Because in that instant I understood that holding your child’s hand is way to touch their heart.

It’s OK to Ask

He pondered a bit and I could see another question forming: “but you are white….and she is black?”

It’s not unusual for me to get this question as a mom to 5 children, 3 of whom are of a different race.

I went on to explain to him that we can be a family without our skin tones matching.

That there are all different kinds of families and ours looked like this.

And once again I saw more questions bubbling up as I explained about our family.

Why is she in a wheelchair?”

“Was she born like that?”

“Can she talk?

I patiently answered all the questions while I saw the little boy’s dad look at me and his face was red from embarrassment.

Between the questions about race and the questions about disability, the dad thought his son had crossed too many lines.

Finally, the questions stopped and the kids went on to play with the waiting room toys.

His dad told me how sorry he was for all the questions.

I only had one reply: “It’s ok, I am glad he asked those questions.  Really, it’s OK.

I would rather have him ask and then play with her, than to walk away and ignore her”.

The Dark Side to Special Needs Parenting

Little do they realize that our child is exactly what lights up the dark corners of our life. But there is a dark side to special needs parenting.

One that people don’t often realize when they think about what our lives must be like.

It’s really all the outside challenges that we face while caring for our child.

It’s the fight with school systems because they refuse to follow IEP’s or acknowledge or wishes, desires and hopes for our child.

It comes in the form of having to fight for government services, which most of the general public falsely assume covers all the financial care and overall needs for children with disabilities.

An abundance of emails and telephone calls to follow up on your child’s affairs ranging from making appointments to following up with agencies designed to assist you through the special needs journey.

Finding new therapists when the ones you leave resign and move on to bigger and better things.

The financial stress of never knowing how you’ll fund out of pocket medical, therapy and equipment costs that insurance denies.

It is having to invite countless people into your home to help your child when you’d just love to be normal and cuddle in your pajamas on a snow day.

The utter exhaustion because you realize that you can’t just be a parent, but that you must also juggle the title of being your child’s personal secretary and advocate.

Searching for opportunities that otherwise wouldn’t exist or just land in your child’s lap, hunting for foundations, grants, and seeking donations through endless fundraising.

The feeling that you’re alone. Quite alone in most of this.

That people may offer words of comfort, but that no one is going to reach out and embrace you in a real life hug and say I’m here to help you.

It is the realization that you can’t even go to Target without the world staring at your child and looking at you either with tremendous pity, relief your child is not theirs, or disgust that you have the courage to take your disabled child out in public.

It’s the lack of kindness and consideration when you desperately need a disabled accessible parking spot with eight-feet of clearance to unload your child with his ramp, but can’t find one because an able-bodied person with no parking permit has decided they are more of a priority that day.

These dark things can add up, and they feel sometimes like they are smothering you while you’re working so hard at being the very best parent to your child with special needs.

They can make you question your own worth, and sometimes make you feel like you are failing. Failing to help your child in all ways possible.

We must remember what it is all for – our child.

And keep marching towards that beautiful guiding light on the special needs journey.

That light is worth all the dark corners that we endure.

“To be a star you must shine your own light follow your own path and don’t worry about the darkness for that is when the stars shine brightest.” unknown

Disciplining Children With Special Needs

During and after the surgery to remove it she suffered numerous complications which caused her to have multiple life long disabilities.

Memories of Bethany’s lengthy battle with a brain tumor and her constant suffering with uncontrolled seizures have made it difficult for my husband and I to discipline her.

We want her life to be as happy as possible.

When children are first diagnosed with a disability or illness, parents aren’t thinking ahead to an obscure time in the future when they may actually have the privilege of needing to discipline their beloved child one day!  But that day is more than likely going to occur!

Bethany’s illness has sentenced her to forever be a two year old with autism, a language processing delay, and a severe, uncontrollable seizure disorder.

It has also caused her to have problems with aggressive and at times violent behavior.

In other words, even though Bethany is a 140 pound, sixteen year old young woman, she functions in real life as a toddler.

She comes complete with giant sized temper tantrums, has great difficulty understanding lengthy and complicated strings of spoken language, and has an extremely limited vocabulary.

So unfortunately, she does engage in a few undesirable behaviors every now and then.

Below are some guidelines that we try to remember when Bethany is acting in a less than desirable manner.

● Is Bethany capable of understanding what we are asking of her? We must be sure to explain what we are asking to her in short, simple, and precise language.

● Is her behavior a common characteristic of or an innocent behavior related to her disability?

I suggest that parents educate themselves extensively on their child’s own unique condition.

Expecting our children to do the impossible is extremely cruel.

● Could this behavior be a side effect of her medications?   I suggest parents familiarize themselves with all side effects, both common and rare of each medication their child takes.  Asking our children to fight the negative side effects of a medication is also impossible, in my opinion.

● Is Bethany’s misbehavior an attempt to communicate something important to us that she is not able to communicate in a more appropriate manner?  Is Bethany hungry, thirsty, tired, or not feeling well and unable to let us know?

I am reminded of an incident when Bethany refused to participate in an outing.

She kept pointing to her neck and telling us she was waiting for it to go away.

We thought she was just being obstinate, but the next day her neck was horribly swollen. It turned out that she had an infected lymph node but was incapable of telling us in a way that we understood!!

● Are we expecting Bethany to be acting as her chronological age and not her functioning age?

Because of Bethany’s brain injury, she functions as a two year old.  It would unfair to expect her to behave like a typical teenager in a similar situation.

● Is she acting this way because she needs attention?

Some children crave attention so much that they will behave in a way to attract even negative attention.

If after exhausting all other options, we determine that Bethany’s behavior is actual misbehavior we try to implement some form of positive discipline to change the undesirable behavior.

Below are some suggestions for putting together a positive discipline plan for your child.

● Set a standard of behavior for your child and be consistent.

Explain the standard of behavior to your child in a form that he or she will understand, be it simple written instructions, spoken words, or in pictures.

● Teach your child in simple, incremental steps how to meet your standard.

● Model the desired behavior for your child.

● Give your child some control by offering choices.  Examples: “You must go outside to play, but you can choose the activity you do.”

“You must get dressed, but you can choose your outfit.”

● Catch your child being good and praise them for it.

Make a BIG deal about good behavior and ignore undesirable behaviors if possible.

● Design a system for rewarding desirable behaviors.

Use sticker charts, coupons, tokens, rewards etc. to motivate good behavior.

While I certainly don’t claim that these suggestions have been the magic bullet in putting an end to all of Bethany’s undesirable behaviors, they have been very helpful to us and I believe they offer a good place to begin.

Disclaimer: I am not a behavior therapist, psychologist, or psychiatrist and am not claiming that implementing these suggestions will “cure” your child of all undesirable behaviors.

Let’s Make Grocery Shopping Easier for Special Needs Families

Are we the only parents who feel a tinge of jealousy watching that adorable family across the restaurant whose little one has the muscle tone to support himself in the restaurant-provided high chair that our toddler can’t use?

Why does it seem as though catering to the group of special needs children in public places hasn’t been thought of yet?

Our current grocery store trip looks like this:

1. Mom assesses grocery list and decides if all items can fit in tote bag or if a cart is absolutely necessary

2. If tote bag will suffice, mom removes stroller from trunk, hooks straps of tote bag over stroller handle….or grab cart if necessary 

3. Place 19-month-old in stroller…or lay him in the back of the cart on a blanket

4. Beg 3-year-old to behave and walk next to me without crying

5. Fill tote bag with all items on grocery list but equalling less than the weight of child/stroller combo to avoid tipping the stroller (yes, I figured that out the hard way one day) – or strategically balance and stack all items around toddler laying in the back of the cart

6. Unload, pay for, and load groceries and children into the car followed by immediately breaking into the chocolate bar that was calling your name in the checkout line

I just want to get my groceries and get out as fast as any other mom!

Can’t it be any easier than this?!

What can we as parents do to give our child a “normal” experience?

Cue the amazing company called Firefly!

This company has given a big dose of “normal” back to our family as we are learning to adjust to meeting the ever-changing needs of our growing boy.

We currently possess a Firefly GoTo Seat.

With the GoTo Seat I was able to put my three-year-old and 19-month-old in the shopping cart together for our trip to the grocery store this week.

I nearly cried, but laughed instead and took an absurd amount of pictures in every aisle on my phone, forgetting half of the items on my list because I was overjoyed at the reality that my children, both of them, were having a “normal” experience!

My daughter shared in my joy as she said from the cart, “I always wanted to sit with my brother in here!”

This was a reminder to me that I’m not the only one searching for “normal.”

Our daughter wants it for her brother, too.

It’s a family thing.

We just want to be able to grocery shop and go out for dinner like everyone else.

If you want your local store to order our specially designed GoTo Shop trolley seat, make you voice heard by going here

Hop it, Easter Bunny!

I don’t allow Hannah to eat chocolate  *gasps in absolute horror!!!*

Well, call the Confectionary Police, throw me in a liquorice cell, dunk me in molten chocolate and make me sleep on a bed of blue smarties!

“Yes, ‘Mi Lord’, Guilty as charged.

Lock me up and just throw away the key.

I am clearly THE most evil mother on the planet and deserve to be punished for my actions”.

So, as you can guess, batting off the potential over abundance of chocolate eggs from Broccoli HQ’s doorstep at Easter time, gets a bit tiresome.   “What does she want for Easter?” they ask. “Nothing, thanks” we repeatedly say.  “She doesn’t know it’s Easter and she can’t eat chocolate…it makes her ill”. “She’s GOT to have something” they say.

Codswallop!

Why, oh why (oh why!) does she HAVE to have something at Easter when:

1. She doesn’t know it’s Easter

2. She can’t eat chocolate

3. She gets treats throughout the year…and not just on Holy days or special occasions

4. She REALLY doesn’t know it’s Easter – did I say that already?

So, come Easter weekend…what do we receive?

Chocolate! ARGHHHHHHH! IT. DRIVES. ME. TOTALLY. BONKERS!

(and daddy isn’t too thrilled either as he has to scoff the lot…and he says that cheap chocolate sets his teeth on edge) I can pretty much guarantee that if Hannah’s given a sneaky piece of chocolate (not by us here at Broccoli HQ, I hasten to add!), we’ll be up with Hannah for a few hours during the night, trying to comfort her whilst she’s writhing in agony, wretching and vomiting until she’s emptied the contents of her stomach (sorry, TMI there, huh?).

I can assure you it’s not much fun for any of us.

Now, the medical profession may scoff at me for stating this, but chocolate really does set off her reflux as does citrus fruit, as teething made her really poorly…as did her jabs…and a certain antibiotic. FACT!

To be perfectly honest, I couldn’t give a monkeys what it says in the medical books, because I KNOW MY CHILD BEST.

So, is it cruel to feed her something that people perceive as a treat and because it’s a certain time of year…only for her to feel really unwell afterwards?

Erm….let me think about that…. It’s a no-brainer really, isn’t it?

So, for anyone who’s ever passed judgement at my cruel and heinous denial…are you happy for me to phone you in the middle of the night and request you come over and look after Hannah whilst she’s feeling ill….or, if her reflux persists and she needs medical investigation and treatment to address her severe symptoms, are you going to stay with her in hospital for a few days? No? Didn’t think so. So, perhaps best if you don’t bother worrying about what I don’t feed my child and have a look at what you’re eating yourself.

Ooops, I feel a mini rant coming on there, must stop!.

Now, don’t get me wrong.

We ARE extremely grateful of the thoughtfulness (ish), because its people’s way of including Hannah…and she gets overlooked at the best of times…but I’d rather people saved their money or gave it to charity instead. So, thanks, but no thanks, Easter Bunny… You may be cute and fluffy, but you’re not welcome here.  Be gone with you…just hop it!

Right, my lovelies. That’s all for this post.

Thanks ever so much for stopping by. Have a wonderful Easter, whatever you do.

Until next time. Annie   xoxo

This post is dedicated to all the Dentists and Oral Hygienists of the world.

DM Orthotics – The Benefits of Dynamic Movement Orthoses

Who can benefit from them?

Since their inception the early 1990’s, the range of conditions being treated using DEFO’s has increased. Clinical research, case histories and anecdotal evidence from patients and medical professionals, highlight the significant, positive effects Lycra orthoses can have for rehabilitation and neurological development for individuals who have conditions which affect muscle tone and sensory processing due to congenital reasons, illness and injury.

Common conditions which can be managed using DEFO’s include: Cerebral Palsy, Stroke, Multiple Sclerosis and Scoliosis.

How Dynamic Movement Orthoses work

Through clinical experience and research, DM Orthotics Ltd developed the Dynamic Movement Orthosis (DMO) to help improve movement, control and function for people with neurological and musculoskeletal conditions.

The use of Lycra in DMO’s can help address difficulties with sensory processing and changes in muscle tone, symptoms commonly found in these conditions.

Lycra is lightweight and close fitting, offering compression against the skin which stimulates sensory receptors within the body to improve proprioception (body awareness) and influence muscle tone.

These sensory benefits are supported by the DMO’s reinforcement panels which improve postural alignment and control of biomechanical movement.

This provides the child (or adult) with optimum positioning and sensory feedback required for positive postural development.

Custom Fit

DM Orthotics’ orthoses are custom made for a tailored fit and can be suited to the needs of the individual.

It is typical to wear a DMO throughout the day and concerns over; getting the orthosis on and off, temperature regulation or access to feeding tubes and nappies can be accommodated.

For example, a DMO Suit can be adapted for toileting needs using openings and fastenings.

Clinical Evidence

Research shows that wearing a DMO suit may provide stability to the area of the body that needs it most and can help to improve function.

For example, wearing a DMO suit can improve trunk control, which influences balance when sitting, mobility and hand function.

Improving an individual’s function can contribute to improving independence and children may require less practical and therapy support.

There may also be reduced expense in purchasing other equipment, such as special seating, walking aids or podiatry orthotics. DMO Scoliosis suits have been shown to be effective in minimising the severity and progression of scoliosis in neurological conditions and therefore delaying or halting the need for invasive surgical treatment if supported early.

Patient experience

Victoria Goodman’s daughter Alice has dystonia and started using a DMO Suit at the age of 5. Victoria comments, “We noticed within a month it was making a difference with her posture. She was getting stronger and was able to achieve more.

She’s been able to start ballet classes, which she wouldn’t have been able to achieve before.”

16 year old Tom Watts had a stroke at the age of 11 and uses a DMO Glove and DMO Dorsiflex Sock to keep up his active lifestyle.

“The Dorsiflex Sock is great. Because it is made from Lycra it is really easy to put on. It’s so much more comfortable than rigid splints, nice and light and doesn’t rub.

I can do a lot more running using the sock. I go to an Extreme Sports club – I do wall climbing, mountain biking, rocketball.

The Dorsiflex Sock has definitely allowed me to do a lot more of these things.”

To find out more about DM Orthotics their products and services visit www.dmorthotics.com or call their friendly customer service line on (+44) 01209 219205