5 Tips for a Successful First Visit with a Physical Therapist

1. Make sure your child is rested and ready for the first visit

When your child is tired, not feeling well, or just having a bad day, it will likely make for a challenging physical therapy evaluation.

When this happens, then your child may not perform as well as you know they can, which can sometimes be challenging for parents to experience.

From the physical therapist point of view, I feel that if a child is not rested and ready for an evaluation, there tends to be a less than perfect rapport building moment.

If a parent were to call me and ask if they can reschedule for the above reason, I will usually agree so that the first visit can be a positive experience for everyone.

2. Be ready with birth history and milestones

Having this information ready will help an evaluation progress quickly onto the next step of the physical therapy evaluation.

It can also be useful to just have this information prepared in a preprinted document for when you go to other medical appointments.

Also, don’t forget to list any and all milestones that you find important.

3. Have any and all questions ready to ask your physical therapist

For those families who have never been to any therapy appointments, they usually have so many questions that they are ready to ask and then forget to ask all of them.

I think it’s best to have a prewritten list of questions to make sure all your questions/concerns are brought up to your physical therapist.

I welcome all types of questions from parents and will do my best to answer them within my scope of practice.

I want to make sure parents feel like they got something positive out of coming to a physical therapy evaluation and this includes answering any questions pertaining to their child.

4. Have your list of goals and expectations ready for your physical therapist

This step is a very important one! In order to build a positive relationship with my patients and their families, I make sure to discuss what my patients and their parents’ expectations and goals are for physical therapy.

Some parents think that they are telling the physical therapist what to do by being direct about what concerns/goals they have, but I want my families to know that I am working together with them and not ignoring their concerns.

The best way to do this is to make sure everyone is in agreement on what the goals and expectations are for physical therapy.

5. Be honest and open with your PT

They are there to help your child and help you!

This is my primary focus in my practice as a physical therapist.

I never want a family to feel uncomfortable or wary about me working with their child, so I always make sure to tell parents to let me know if they have any comments, questions, or concerns about anything I am doing in physical therapy sessions.

I am an advocate of open, clear communication with my patients and their families about what I am doing during evaluations and treatments because I feel that informed patients make the best patients.

Laundry Duty: The Message Our School Sends My Son and His Peers

Patrick, my middle school child, sat in the kitchen, reading the newspaper and drinking his French Cappuccino.

I was perusing Facebook, making sure that I had not missed anything newsworthy overnight, like a funny cat video. Ouch. It was not a funny cat video.

The latest title from Ellen Seidman’s “Love That Max” blog caught my eye: “Let’s have special ed students do the football team’s laundry. Wait, what?!”

Maybe this is not going where I think it is…

I read the first paragraph: “Sometimes, you read or hear about something done to a child with special needs and all you can think is, How is it possible anyone could think that’s OK?” Yeah. That’s where it’s going…

“Do you know if Mrs. Locke’s class still washes the basketball teams’ uniforms?” I asked Patrick.

“I guess so, why?” Patrick asked. When Garrett was a student in Mrs. Locke’s special ed classroom, he washed the boys and the girls basketball team uniforms….

…and I thought it was OK.

Ellen’s blog was a response to another mom’s story. Maybe it was Ellen’s opinion and no one would agree with her.

I glanced through her followers’ comments and words like “menial labor” and “subservient” were repeated. Thirty comments and only one mother defended the idea.

“I was just reading about other special needs moms who do not think it is appropriate for kids like Garrett to be washing the athletes’ uniforms,” I told Patrick.

“Isn’t that the kind of job he’s going to have someday? Besides, he loves to help people.”

“I think they are bothered by the fact that your class doesn’t have to wash the laundry.”

“Well, my class doesn’t get to go horseback riding!” It’s true. Patrick’s class does not leave the building to go to hippotherapy.

Patrick’s class does not have aides or a sensory corner. And Patrick’s class does not do the laundry for the basketball (or football!) team.

Maybe it’s just me.

Have other parents complained at our school?

I reached out to Katie Locke who still teaches the class Garrett attended in middle school. “I feel like a lot of what goes on in my classroom is because I have parent backing,” she said.

“My students enjoy and take pride in doing the laundry, as well as other life skills. My students probably learn more from me of these skills than the extended standards.”

Katie explained that the team brought the uniforms to the laundry room (in a basket!) after the games; and her students went there to wash and dry them.

“This also taught the students some independence,” she said.

“The students loved leaving the classroom, even if it’s just down the hallway, to check on the laundry.”

I asked her about the argument that doing laundry was not teaching academic skills.

“We were most definitely using math skills,” she responded.

“The boys’ coach liked the uniforms stacked in a certain order and then laid out by numbers. The girls’ coach wanted the uniforms hung in the locker, which required the students to match the uniform numbers to the correct locker. The class also washed the towels from the kitchen and would return them folded and ready to go.”

The year Garrett was in middle school, his class was recognized at the last basketball pep rally

The team presented the class with school t-shirts and thanked them for a job well done.

“I was not at all offended or embarrassed for them,” Garrett’s bus driver, Heather Fosnaugh, recalled that pep rally. “My heart was full because they were happy and proud of themselves for doing their part and being part of the team.”

Below is a photo of Garrett’s middle school class wearing their shirts. My son is holding the pan of brownies and he appears to be quite proud of his place in that classroom.

I shared Ellen’s blog on Facebook. In it, she asked two questions:

1. “What message does it send to these kids that they’re cleaning their peers’ dirty clothes?”

Answer from Lisa Mariano, mother to a toddler son born with Smith-Magenis syndrome: “I think it totally depends on the kid. If it makes the kid happy and he feels good about himself, which I would think it would in most cases, then it’s great.

I suppose if there was a high functioning child, who perhaps wanted to but was unable to join as an athlete, it’s possible he could feel like it’s degrading.”

2. “What message does this send to the football team and the rest of the student body about them?”

Answer from Kristy Hamilton, mother to a teenage daughter born with Smith-Magenis Syndrome: “I know if my daughter was in charge of washing and preparing the uniforms, she would be over the moon.

It would also teach the typical peeps that special needs people are valuable and worthy. These typical peers are the future and are the potential business owners.

Who knows the seed this will plant in one of their heads? While Isabella is more like other kids than she is different, she is different.”

We live in a very small school district. It’s town where you go to school with the custodian’s children.

He is referred to as “Mr.” And if someone overheard you say his job was “menial labor”, your mom would know about it before you got home.

If asking my son to do these jobs is insulting, what message are we sending to ALL our students about the adults who do so for a living?

It has been three years since my son, now a sophomore, was washing team uniforms in middle school.

He does not attend high school games because the noise and crowds over stimulate his sensory issues.

However, his classmate Matt is an all around sports fan. I spoke to his mother, Lisa VanWey, about the laundry duty our boys shared in middle school.

“I am surprised by the backlash,” she told me. “I absolutely think that washing the teams’ laundry was a positive experience.

We can try to teach these life skills at home, but Matt is more motivated by his teacher and classmates. He loves to help people.”

Matt is a regular at most sporting events and Lisa believes that those friendships were made during the middle school years.

“I feel we can trust the football players. Sometimes on game day, the players will want to run to Subway after school. They will text me and ask if Matt can go with them.”

I spoke to one of those football players, Josh Strohl, and asked him what message he thought administrators were sending when Matt and Garrett’s class washed table tops and other custodial type duties around our school.

“What message do you mean?” he asked. “Do you, or the other guys on the team, think the kids in Matt’s classroom are your servants? “Um, NO!” He was insulted at the insinuation.

“Why? Because they have disabilities?”

“Well, that…but mostly because the kids in Matt’s class have washed other students’ dirty uniforms.”

“No. Matt likes to help. And not just bringing us water and stuff at the games. If we lose, he makes everyone on the bus feel better on the ride home.

He’s always in a good mood and you can tell he doesn’t want you to be sad.

Matt rides the football team’s bus to away games. He helps with water and whatever else is needed.

At the fall sports banquet, the football coach recognized Matt. He said that Matt started out as a manager, but ended the season as a team mate. It’s not just the football team that treats Matt as an equal.

This year, the basketball team voted Matt the most valuable player and presented him with a trophy.

So, what message have the parents, the teachers and the coaches sent to the athletes about our special needs children at Northeastern High School?

Franchise Photography captured that message in the photograph of Matt, aka Captain America.

All About a Bed

And it has only been through talking to other parents of children with additional needs that you see this is a common thread.

It’s like they weren’t quite ready to come out yet – they still had some growing and developing to do.

Alex outgrew his moses basket in no time.

We noticed he flailed a lot in his sleep then, so we swaddled him up and it worked like a dream.

He seemed to like the security of it.  The closeness.  The contained space. His cot worked fine too.

Here we used the wonderful grobags his sister had had and here began Alex’s long association with his sister’s hand-me-downs – pink and red grobags merged into pink and red quilt covers as we moved him into her old toddler bed.

This was a huge moment for me, for us, Alex was no longer a baby but showed no sign of toddling.

He was our non-toddling toddler.

In his big bed. And it was here that we began to diverge further and further from ‘normal’.

He was ok in this bed so long as he didn’t try to get out.

With no sense of danger we knew Alex would have no qualms about trying to get out.

Although for a while he didn’t.  He would often wake up in the night, but he would just lie there, chatting, stamping his feet till he went back to sleep again.

Then he realised that if he wiggled, he could move himself out of his bed.

On the one hand, this was a huge developmental step, on the other… a bit of a problem.

Not knowing he was safe meant we couldn’t sleep soundly.

Every bump led to us running into his room to make sure he as ok.

For a while we got around this by tucking him into his bed extra super securely.

But once he learnt to sit up we knew it was only a matter of time before he worked out how to beat that too.

It was like a super slo-mo Krypton Factor.  Briefly we had a bed delivered by our OT.

Oh God that bed.

I don’t know what I was expecting but… a huge single bed, with a washable mattress, cloth sides to keep him in… it smelt of hospital, of ill, of I don’t want it in my house. Take it away. This is not a boy’s bed.

And just like the book… I sent it back.  Crying. Briefly we had the safe sides bed.

I loved this.

It was beautifully enclosed but still a little bed like.  It made our holidays possible. But he was still a step ahead of us – one day I found him launching himself over the sides with glee ‘Mummy, look at me!’ all over his face and all I could think was ‘Oh.  Oh.  Now what…’

So for the next seven months he had a make shift bed on the floor.

He went to sleep on a blow up bed against the wall.

There was a sofa butted up against it that was too tall for him to climb over and a bookshelf at the bed’s foot that was too heavy to push over.

It wasn’t pretty.

It wasn’t the bed I’d dreamed of.

But it worked.

It worked for far longer than I was expecting as the NHS system creaked into action.

We viewed high sided beds, quotes were produced and recommendations were made.

These beds are expensive.

They are bespoke and made in small numbers.  So we crowd funded the money.

No, we didn’t, but it felt like it. Some amazing friends of ours did a trekking fundraiser for us.

The county council put some money in.  Every county is different in how funding is arranged.

Here the county puts a set amount towards a bed – something every single child needs – and then they go out to charities to help fund the remainder.

Thank you Newlife.

Thank you everyone.

This is his bed now.

A high sided cot with perspex sides and padding at each end.

It was never the bed of my dreams.   Never where I could have expected he’d sleep.  But it is comfortable.

We can snuggle in with him at night.

In the morning when he wakes up we all dive in.

And he sleeps well.

And he is safe.

So we sleep.

That is the story of sleep in our house.

These Are a Few of our Favorite Things…

Skidders

We have kneepads and socks by Skidders that help our son get a little more traction when he is playing along the floor on his Scooot.

The kneepads have little gripper dots all across the surface to help grip the floor as your little one moves.

We also have shoes by Skidders that have a gripper bottom that wraps all the way around the toes.

These are great for the times your child really wants to use their toes to help move but normal socks are too slippery.

Scooot

Our son loves his Scooot.

At twenty months old he is not zipping along the floor as quickly as I hope he someday will, but he is content to be lying on his belly and kicking his little legs and feet to propel himself across the kitchen floor.

We can appreciate the fact that this mobile toy was invented specifically for children with special needs, and it will grow with him as he learns to sit on his own!

Peek-A-Zoo apps

You can download the lite version of these apps to your iphone, tablet, etc. and have a quick interactive game for your child to play.

Because our son is young and therefore has a short attention span the free lite versions of the Peek-A-Zoo apps is enough to entertain him.

We like this series because of the bright colors, sounds, and because the screen is easily activated by touching anywhere on the screen.

This is important if your child has a difficult time hitting a small target.

Our son can touch his hand or fingers anywhere on the screen and get visual and auditory reinforcement.

GoTo Seat

We love our GoTo seat.  It comes with us to restaurants, in the stroller, to the grocery store, in the wagon, to the dinner table.

It affords our son many more “normal” experiences than he would have without it.

Owl Pillow

I originally purchased this little Skip Hop owl pillow to support our son’s head and neck better in his gait trainer as he had weak neck and shoulder muscles.

It served its purpose there, and we have continued to be able to use it in the stroller or car seat for a little extra support.

Dear Special Needs Mom (On Mother’s Day)

Without pause you continued on. You gently rocked the wheelchair into a safe position to take it down the ramp and out of the vehicle, mindful of your little one’s arms and legs.

Raising the ramp with one hand and holding onto the wheelchair with the other.

You walked around to the other side of the car where I watched you unload the other half of your heart…your youngest child waiting patiently for you to free him from his seat.

You braced the wheelchair with your leg so it didn’t inadvertently roll into the street, while lifting your other child out of the vehicle.

You reached for your purse, one grocery bag, and a bottle of hand sanitizer that you placed in your pocket.

Holding one hand of one child and pushing your other son’s wheelchair with the other, I caught you briefly recognizing your wound, and although I’m sure it was throbbing you carried on as if nothing had happened. 

For a moment your eyes caught mine.

My eyes holding back the tears that recognized so much of myself in you.

For I too, am just like you.

Temporarily disguised as just a person on the street corner, my special needs life waiting for me at home.

I wanted to approach you to say hello, but I could see your determination and focus and knew that I would only serve as a distraction from your shopping mission.

I wondered what you were rushing into the store get; a carton of eggs, chocolate pudding for your children, and a specific brand of apple juice – the only one that your child with special needs would drink – knowing that your one small bag could only hold a handful of essential items.

I was walking to my car in awe of another strong mom, when I turned back into the store.

A flower display not far from the entrance with a handful delicate flowers –  daisy mix with pink carnations and a single rose caught my attention.

A bouquet card lay in the middle.

I made my purchase and quickly filled out the card:

“A Special Needs Mother’s Love is the fuel that enables a normal human being to do the impossible. 

Happy Mother’s Day,

Love a fellow Special Needs Mom”

I left the bouquet on the windshield of your car, hoping that it would bring you sunshine in a day that is often filled with a balance of difficulties and joy.

Every now and again sometimes we just need someone to see us, to know we’re not invisible and we’re not walking the journey alone.

A Poem About A Very Special Little Girl

I cannot profess to ever even considering becoming a poet – I know nothing of syntax, verse, iambic pentameters and such – I mean heck – my poem doesn’t even rhyme!

In fact I would go as far to say I have probably disgraced poetry and all it stands for!

Many people will have been met with the “Welcome to Holland” poem up on starting this special needs journey; and I know it can be subject that sparks many debates and unfurls a whole host of different opinions.

For me personally, I loved it. I know that others that feel very differently.

But I would like to share this with you because I think it conveys a lot of what we all go through at the start of the special needs parenting journey.

I hope it resonates with everyone.

A Poem about a very special Little Girl

Little girl – You weren’t meant to enter the world this way Little girl, how our hearts ached for you those first few weeks.

Awash in a sea of tubes, monitors and machines. You had us petrified, so anxious, so torn.

You fought hard.

You did more in those first few days than most of us would have to contend with ever in life.

You made it when they thought you wouldn’t.

Little girl – How we all cried, how we sometimes still do. Little girl, we sometimes still mourn what could have been.

Remember that day on the park, you sat on your mummy’s knee and we watched the children play?

All I could think is – will my little girl do that one day?

And then I told myself… even if she doesn’t, it’s more than okay. Because you’re here. You can feel love and happiness, and that’s what matters.

Little girl – When will all of these appointments stop?!

Little girl – You have no idea how many people are involved in your well being and care for you. This was never meant to happen and it’s hard, but we know it’s all to ensure you have the best future possible.

When people ask “how is she doing?” and “how are you coping?” I still don’t know what to say.

“She’s achieving her own milestones, she’s growing” or “I’m doing fantastically, we’re so happy” or “I cry a lot, there is a lot of pain and uncertainty in our lives”.

One day I hope it won’t be the latter.

Little girl – One day I want you to have a brother or a sister. When we have more money, more stability, when things are settled… in the distant future.

Little girl – They will adore you how we do. Mummy and Daddy worry – This world can be cruel, people judge and can be unkind.

We don’t want you to ever see that. We want it to be butterflies, flowers and smiles for you. We will do everything we can for that to be your reality.

Little girl – We try not to focus on what you cannot do. We want to celebrate what you can do.

Little girl – Remember when you learned to breathe for yourself? Remember when you first smiled? How about when you rolled on your side the other day? Remember how mummy always cries with happiness and gives you a big cuddle in excitement?

Little girl – Sometimes you are so grumpy. What did the car seat and pram ever do that was so bad?

Little girl – Will you ever be able to tell us?

So much we don’t know.

Little girl – You are our world. You keep fighting so we can.

Little girl – We love you so much.

Bring the World to Me!

One of the current ‘Buzz’ phrases in special education at the moment is ‘Remove barriers to learning’.

Now, a barrier to learning in my mind might be anything from a bad night’s sleep to a severe visual impairment.

If your child is faced with barrier upon barrier; physical disability, multiple sensory impairments, tactile difficulties and maybe even more… where do you start?

What I can do

My suggestion would be to start with what your child can do, even if their major movements or actions are involuntary.

We all begin learning using trial and error and by introducing some level of reward associated with a child’s movement, vocalisation or action there is the opportunity for incidental learning.

• Leave a set of car keys next to my most mobile hand on my tray/knee/arm rest.

• Position something dangling next to my head.

• Lie me on a space blanket

• Place a sound to light toy in my line of vision against a dark background

Offer me variety

Think texture, many of your child’s toys will be made from plastic, no matter what shape they are (banana, tea cup, square) to a child who is relying on their sense of touch they will feel much of a muchness.

Consider a crawling baby moving around your house and the textures he/she would encounter, the edge of the rug meeting the hard wooden floor, the dangling curtains and the cool slab of stone at the edge of the fireplace.

Be creative, be a magpie, create baskets of various textures, sounds and smells.

• Use a kitchen roll holder to hold various textures, wooden, metal curtain rings (eyelets removed) Crochet hoops, sparkly bracelets etc.

• A big shiny balti dish makes for a great backdrop to anything sparkly or flashy and beads dropped inside will make a lovely noise too.

Keep it consistent

Keeping some things the same within a daily routine will offer a child the opportunity to understand and possibly predict what is about to happen, these can be known as ‘objects of reference’.

• Position a spoon (or syringe if more appropriate) in my hand at meal times.

• Allow me to hold a nappy as I am being changed.

• When getting ready to go out, give me a shoe to hold.

• About to go into my standing frame, make the velcro noises with my leg splints.

Repeat, repeat, repeat!

If your child is likely to let go of, throw or swipe objects away then continuous play can depend on how much time and patience you have to continue to pick up and return toys and objects.

Make life easier for yourself and attach a selection of toys/objects in the same, fixed position for a period of time so that your child has the chance to remember, show preference and maybe make an independent choice.

• Use a simple clothes rail to dangle a range of toys and objects at a reachable distance above my feet, hands or head.

• Attach a range of materials of various textures to the inside of a bum bag using elastic and ribbon so I can reach down and explore when out and about.

• Use a simple clamp to position sensory toys onto my tray so I don’t knock them off by accident.

• Actively watch me for a short period of time to see if I show any preference or avoid an item. I use these strategies and resources (amongst many others) to ‘Remove barriers’ in my classroom on a daily basis and my son who has profound and multiple learning difficulties benefits from them also.

I hope this helps you to bring the world to your child and have some fun doing it too!

Enjoy, from Jo and Thomas!

4 Top Travel Tips for Parents of Kids with Special Needs

I never thought we would be the type to load two toddlers and all of their belongings a slew of suitcases on a plane to get away, but we decided to go for it.

Winter lasts waaaaayyyy too long where we are from and it was time to search for a little sunshine and sand.

I am going to share with a you a few tips for traveling with a child with special needs that helped us navigate along the way.

1. Pre-measure all of your Meds and Baby Food/Formula that you will need for the Airplane and Airport Ahead of Time

I measured out small tubes of formula and syringes of meds with caps and had them all ready to dump into the bottle as soon as we could find water in the airport.

To make it even easier, put all of the formula and meds for each bottle in a separate Ziploc bag, which you could label with the time needed.

Ziploc bags are your friend.

And they prevent spilling in the diaper bag.

It is not fun to balance bottles of meds or try to measure formula out of a large container on your lap in the airport.

2. Have an AMAZING Diaper Bag with lots of Room and Pockets

We love our Skip Hop diaper bag – it has loads of pockets, is easy to wipe down, expands if you need more room, and keeps everything really organized plus it’s cute and dad doesn’t mind toting it around.

This will help to avoid that crazy digging in the bottom of the bag thinking, “this is NOT that big of a diaper bag…..WHERE IS IT?!”

Especially in a stressful travel situation when you just want to find what you need.

3. Travel with your Stroller

There is nothing short about navigating through an airport.

Our original thought was to travel with as few pieces of equipment as possible and maybe leave the stroller or car seats behind.

The stroller was our saving grace and since our son’s lack of muscle strength makes it difficult to use a flimsy umbrella-style stroller we hauled our jogging stroller along.

It worked out great, and provided a place for naps, a quick diaper, feeding, etc.

My advice on this one is think through the equipment you need and don’t need to take.

Pick the ones that will kill the most birds with one stone.

4. Do your Homework to see what the Requirements are on the Airline you will be using for taking Medications through Security

I was worrying about how to travel with refrigerated medications and after a quick check online, I had my answer and could feel positive we wouldn’t be stopped or forced to dump out all of my son’s necessary medications for a week away from home.

The airport security staff were very thorough in their checks of the baby food, formula, and medications we took on board with us and we had no issues.

A Home and a Workplace?

It’s very strange having people in your home. You feel like it should be tidy, spotless and you should be dressed.

This can often be a crazy goal when you have an appointment at 9am.

Even if you are not actually being judged you feel like you are.

When you’re pregnant you have a home visit from the midwife send health visitor.

At the time I presumed it was to check I didn’t live in a hell hole and we’d resume our lives as normal after these two home visits.

Instead we have a steady stream of professionals who visit. Physiotherapists, OTs, community nurses, social worker, portage.

Over the last 2 years we’ve gotten more used to this experience, feel more comfortable having people in our home for an hour or so.

Then when they leave we can sling our PJs back on, even though it’s 2pm, and stick on the TV.

We are now entering a new phase.

We are struggling to care for our son between us. As a result we are beginning to have volunteers, careers and nurses in our home for longer periods of time.

As I write this we are unsure of how many hours a week this will be for, but there’s talk of overnight nursing care.

We go to bed while someone will sit in our son’s room, awake, and watch him to make sure he doesn’t have seizures or is sick or suction him if required.

This is a hugely alien concept. Our house will not only be our home, our sanctuary from the world which we can withdraw to, but also a place of work.

We have to complete risk assessments, adhere to health and safety regulations and provide equipment.

I worry our home will be judged.

What if I’m too knackered to wash the huge pile of syringes that accumulate during the day? Will I feel uncomfortable to leave them until the morning as I would now?

I don’t even want to think about being intimate with the husband!

And while I’d love a beautifully decorated, clutter-free house like you see in the magazines, in reality we live in a rented bungalow full of mismatching Ikea furniture.

As well as all the toys you’d expect a toddler to have we have numerous pieces of equipment for my quadriplegic child.

Let’s not even get started on the never-ending fluff from the cat.

I know we desperately need the help, and I’m incredibly grateful we’ve been offered it.

I just can’t help but worry about when I need a wee in the middle of the night though.