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

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.

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

Since I left uni I’ve always worked, I’m lucky enough to have a job that I love doing and I always assumed I’d return to work after Sam arrived.

We needed the income from both our jobs to keep a roof over our heads and to pay the bills; so when Sams additional issues were identified we had to take stock and look at things a little differently.

To us, Sam is a very typical little boy – it’s just that in addition to the usual run of colds, tummy upsets and Dr’s visits that every parents has with their child, we also have appointments with physiotherapists, occupational therapists, neurologists, epileptologists, dieticians, orthopaedic specialists, neurodevelopmental therapists, othoptics, ophthalmology and orthotics.

And that’s just for the routine stuff.

Naturally, all these appointments makes life feel like a mad juggling act most of the time, and one in which, frequently, I may drop a clanger.

For the most part, my employer has been very supportive but there comes a point when life needs re-evaluating.

In 2014, I reduced my hours to part time and absolutely LOVED it!

For the first time since Sam was born I actually had time to do mundane things like housework, I loved doing the school run because it was what any other Mum did.

The Great Laundry Mountain of North Staffordshire was finally conquered.

And I was able to spend precious time with my little boy.

When Sam started at school full time I made my employer aware that I intended to return to full time hours, as per my contract.

When I’d gone part time it was written in that I would automatically return to my original full time contract as of 1^st September 2014.

However, I was called into a formal meeting and it was put very plainly – I needed to prove to them that Sams issues would not impact on my ability to do my job.

Because he has special needs I had to run the gauntlet of proving that I could handle working full time with a medically interesting child – it was all I could do not to punch someone!

I’d managed this perfectly well for over 2 years even when Sam was an inpatient on the childrens ward – his Dad and I took turns to stay with him overnight so we could each get a bit of sleep.

But despite all this, it was up to me to prove to them that I could do it.

I’ll be honest, it was a slap in the face – after almost a decade of service in the same role, I felt like I was being pushed out as I had suddenly become ‘unreliable’.

After two grueling and quite frankly insulting meetings it was agreed that I would indeed return to full time hours – but I still had to prove myself.

More than once I was asked by a colleague if I shouldn’t be concentrating on my son, instead of working full time.

Now I’m a SN mum, life is very different to what I expected but in ways I never imagined would change.

Under my new line manager I have a clear plan of how to develop my job role AND fit work around Sams appointments etc.

Things are getting better.

Work allows me to be ME, not just Sams Mum (admit it folks, you know *exactly* what I’m talking about); I have interactions with adults who aren’t assessing how flexible my sons joints are, or how wonky his brain is.

And it’s a life-line.

There is a lot of legislation aimed at making life easier for working parents, especially those who are carers… in my experience, getting back to work or arranging flexible working is not only do-able but essential, and the majority of the issues employers raise are actually done out of concern for us and our well-being.

Sure, employers need to protect their assets and ensure that their employees are capable of doing the job, but its not in their interests for us to work ourselves into an early grave either.

Sometimes, juggling life with work is a battle, but if its what’s best for you then go for it x