Mementos from The Hard Times

Most of our mementos come from a great place of joy, but they can also originate from a place of tragedy or sadness.

That doesn’t make them any less special or any less treasured. In fact, in some cases this can make our mementos even more significant.

I have this stuffed animal pile that my child with special needs has long outgrown any interest in. 

They remain tucked securely and safely away in a blue fabric bin with frayed edges in the corner of his closet. It still has a distinct new baby smell mixed with the sterilization of hospital rooms. 

Perhaps once an eerie smell has over years become familiar with a form of acceptance and acknowledgment that it’s a representation of a piece of our story.  

Occasionally, I’m forced to move the bin to vacuum or when I need to get a step stool to reach the top of my son’s closet for his anti-suffocation pillowcases and benik splints. 

I’ve been known to take out each stuffed animal and examine each one carefully as if I’m assessing his or her health status periodically.

I did have a day or two when I questioned their value.

I contemplated their space in the closet in relation to, “letting go.”

The king of the stuffed animal pile is a Make-A-Bear that was given to my son on Christmas morning in 2008, he had survived the night after we had consented to a blood plasma transfusion in a desperate attempt to save his life.

Barely coherent and heavily medicated myself, I remained separated from my first-born son on the very first Christmas of our lives as a new family. I sent my husband to his bedside so he wasn’t alone on Christmas while I clung to the comfort of a priest at my bedside offering me a rosary and a prayer Christmas morning as we asked God to spare my son’s life.

My husband called and reported that our son had been gifted by a hospital Santa with a Build-A Bear in a Merry Christmas shirt.

It was his first Christmas gift.

Soon after, all the rest of his stuffed animal friends joined him; a small teddy bear angel, a frog, a musical elephant, giraffe, a dressed up teddy bear, panda and a miniature get well balloon – which to this day nearly eight years later is still inflated and resides in that blue bin keeping all the stuffed animals company.

On day fifteen they told us there was no hope and we removed our child from life support, forty-five minutes later he took his first bottle, and came home two days later with hospice care which expected our son to pass away at home shortly thereafter. 

However, he grew stronger by the day, although it was obvious his recovery would come with significant challenges and a profound and very serious disability early on.

That blue tattered bin is a reminder of where we started and how far we’ve come.

That stuffed crew kept him comfort when I couldn’t get to him, stayed by his side night and day, through all the times doctor’s jammed their thick fingers down his tiny throat to demonstrate he had no gag reflex, they were there the moment he was baptized in the hospital and served as witnesses to the event.

They were there through it all.

Those furry stuffed animals.

They are precious mementos and it seems hardly fair to send them off to the goodwill after the incredible service they provided to my son in his time of need – tiny stuffed heroes.

Years from now I imagine his little brother finding them in a trunk, half rotten and covered in dust, wondering why on earth I stashed them away for decades. 

I hope he looks back on pictures and remembers the story we’ll tell him about the significance of those stuffed animals.

The mementos from the hard times can tug and find a place in your heart so deep that they eventually bring us just as much joy and comfort as the mementos from the happy times. 

Guilty Frustrations

Although it came with peace and quiet where Zachariah would otherwise be distressed it also came with a relay match in the middle of the night.

Whenever it would fall out, I would have to dash out of bed and run to quickly plug the dummy back in. We all get the drift.

I would often discuss this routine with friends and we would compare notes on how to make it easier, a big tip being the glow in the dark dummies to help you find it.

Another being to send the dummy off to the dummy fairy.

This would come with a whole new level of guilt if I took away Zachariah’s comforter!

Then another being just wait until they can hold their own dummy and put it back in themselves, this sounds great, however my son has global developmental delay and a visual impairment, he does not have this option.

So two years on we still have a dummy for comfort and we still have the continuous game of dummy running throughout the night.

Some nights scoring up to 30 dummy runs! Gold Olympic medal please?

The other night I heard him shout for the tenth time, I rolled over and stumbled out of bed and shouted “why can’t he put his own dummy back in”? “Why are we still up so much throughout the night for a dummy”!?

Straight away I had this rush of guilt!

My son who relies on me for everything needed me to go and put his dummy back in, it wasn’t his fault, I should not be pointing my anger and frustration towards him, he is a little boy who has fought so much to get to where he is today.

I felt like such a horrid Mother as I got myself so worked up, the pure exhaustion from the unsettled nights had really took its toll and I had no more room left to be okay with it.

In the space of 2 minutes I had gone from being asleep, to being woken up, to shouting, to feeling utter shame and guilt for feeling frustrated with my son.

It happens too often doesn’t it?

We crack on with our lives, we get run down from all the responsibilities we have being a parent to a child with complex needs and then we have a complete blow out to then be left feeling guilty.

We wonder where we can send our frustrations to, wouldn’t it be great to have a little bin we blow all our frustrations into, seal it up and chuck it away without it affecting our children and without it being sealed with the guilt.

I never want my son to feel like he is a burden, nor to feel responsible for my tiredness and grumpiness as the only thing he is responsible for is bringing utter joy and love into my world.

The day we decided to try for a baby was the day we were ready to give up everything for them, tonight I remember that, remember that we knew it would be tough but it would all be worth it!

I love my boy on tired days and on non tired days all the same!

Rochelle, Mummy to Zachariah xx

Autumn

These days not many things excite me but this time of year gets me a bit giddy every time.

Two things happened today that made me realise that autumn (or fall depending where you are) was upon us…

The first was all the crunchy leaves that are starting to appear on the ground.

The second was all the jokes online about it being time for pumpkin spice lattes and so on.

Not only is autumn one of the most beautiful times of the year, it is also mild enough that hot drinks somehow taste even better and you can cover up with layers of jumpers and coats.

I remember both autumns so far with Amy… even though going out is hard and she often gets upset on walks… there is so much more to take in.

This year I can’t wait to try and involve her as much as I can, now she is more aware and her vision is better (with glasses) I feel like we should really take advantage of the sensory pleasures that autumn brings.

I am thinking walks in the Upsee where she can hear the crunching with each step in unison we take.

I am thinking collecting leaves and making artwork when we get home (even if it is usually me that is excited and not her!)

I am thinking warm drinks for me and warm blankets for her.

Sometimes I even let her taste the cream on the latte as it is so sweet and yummy. She is 100% tube fed but we are allowed little tastes.. when she permits!

The other great thing (some don’t find this great) is that the Christmas and Halloween items start to appear. It’s so fun!

Trips to the garden centre become like a free trip to the illuminations; there is sparkle, colour and wonder everywhere.

They say as you get older the magic of that time of year fades away but having children rekindles that love and makes you want to pass on that magical feeling to the next generation.

Capturing Amy’s attention and getting her excitedly involved in something is not easy and it is often quite unpredictable what she will enjoy.

Earlier this year we went to a massive indoor illuminations place – she hated it. BUT, they had this light show that went on every 20 minutes and she LOVED it.

Because it had lasers, and moving lights and music she was absolutely enthralled. I was actually very moved by how much this show unexpectedly amazed her. We stayed to watch the show again a second time and she was equally pleased by it.

My whole family were there and I could really feel a warm atmosphere and everyone was just so happy because she was.

This is what we want to achieve with this next few seasons!

You may have noticed that in a lot of my posts I complain about equipment, appointments, housing issues and so on… but when I get onto a subject about something I love it really does get me excited.

I really don’t get that feeling often, I used to even get excited about a trip to the supermarket – these days you have to prize me out of the house or bribe me in some way.

I have become so antisocial, a bit of a recluse, and just so drained.

A lot of the hobbies I once had no longer interest me, and with the stress of everything I have gained a lot of weight.

Summer this year has upset me a bit.

Amy is now a size where she is getting difficult to carry for long periods of time and this means that a lot of summer activities are becoming a lot harder on our backs.

Trips to the park, going in the paddling pool, going swimming – things like this are becoming more challenging.

My thinking is that autumn will be the perfect time to properly embrace the great outdoors without being sticky hot and also unable to move the next day!

I guess I am trying to declare this time of year as special needs parent season!

No ice on pavements when pushing the wheelchair, no overheating when carrying around a park, able to wear more clothes to hide feed stains and unbrushed hair etc.!

I am seeing more and more now the different between Amy and her peers. Developmentally and so on.

Trips to the park now mean children her age asking why she isn’t walking or what that tube is.

It’s innocent curiosity and these children are so eager to learn and accept Amy and be her friend. As a parent I find it bittersweet.

Recently she dystonically hit a child at the park and I said “sorry, she didn’t mean to do that” and the little girl responded “don’t worry Amy. It’s okay. Your muscles work differently to mine” and then she hugged her. It was the sweetest moment.

This time of year though, it makes me somehow want to be a better person. Weird isn’t it? Do any of you feel the same?

Sports Opportunities for People With Special Needs

While most people have the cognitive and physical ability and freedom to choose an activity that looks like fun and go for it, those with unique special needs may not be able to participate so easily, especially in sports!

Sadly, too many people with special needs and disabilities don’t have the luxury of getting themselves out into the community to participate in sports or other activities that the rest of us just take for granted.

Finding sports opportunities that special needs individuals can easily and comfortably participate in often poses quite a challenge!

Yet everyone, including those with special needs and disabilities should be afforded the opportunity to participate in the sport of their choice!

There are three things that some individuals with disabilities or special needs may require to be able to fully enjoy and participate in community sports opportunities:

1 – The assistance and supervision of another responsible adult to ensure safety.
2 – Special understanding and accommodations.
3 – Physical modifications to the environment or equipment.

Many people with special needs do much better participating in sports opportunities designed and created especially for people just like themselves, who share similar special needs.

Some children and adults with special needs may require a bit more structure, supervision, assistance and accommodation in order for sports participation to truly be enjoyable experiences.

Below is a list of agencies and sports programs in the US and UK for those with special needs or disabilities:

1) For an extensive list of special needs sports opportunities in the UK, check out The National Disability Sport Organisations.

2) Horizon Sports Club (UK) is a registered charity which provides a unique after-school sports club for children and young people with disabilities, living in South Buckinghamshire, the opportunity to develop both physically and socially through the enjoyment of sport.

3) ABLEize (UK) is the largest disabled recreation and sports resource on the Internet

4) Oxfordshire Sport and Physical Activity (UK) also has a lengthy list of special needs sports opportunities available on their website.

5) Disabled Sports USA provides adaptive sports opportunities for people with disabilities to develop independence, confidence, and fitness through sports.

6) The Miracle League (USA) provides opportunities for children with disabilities to play Miracle League baseball, regardless of their abilities.

7) Surfer’s Way (USA) is a non-profit organization designed to offer children with special needs the opportunity to experience the exhilaration and liberation of surfing.

8) Educated Sports Parent (USA) has a long list of special needs sports organizations available on their website!

Dear Seizures, I Hate You

I hate the way you take over my daughter’s tiny body without warning.

You wreak havoc on her.

I hate the way you slow her breathing down to a terrifyingly slow rhythm and how you make her muscles convulse to the point of total exhaustion.

I am dismayed watching her have no control, while you render her powerless.

I despise how time stands still and five minutes feels like an eternity when you are here.

I hate the heartbreak and helplessness that I feel while I’m forced to watch her go through this, and trying to keep myself calm.

I hate that her big brother has to help me get the oxygen tank to her, and that a twelve year old has to bear such worry for his little sister.

I loathe the terror that floods my thoughts as I beg you to leave her alone and give her back to me.

I can’t stand the fear and anxiety that rise up, making me fear the absolute worst. Every single time.

I hate that every time you strike, I curse at the universe. I am furious.

There is never any rhyme nor reason to your presence. I am mad and I wonder “why her?”

Each time you arrive, I want to scream from the rooftops how life is completely unfair.

She should not have to go through any of this. She didn’t ask for this.

You bring us great sadness, as we wish we could go through this in her place, and spare her from you.

I resent that you make us worry throughout the night for her safety. You rob us of sleep.

You take away our serenity and our ability to ever fully relax. You steal our family’s freedom.

After being confident and complacent for so long, we are now afraid to go anywhere far from home.

We know it will be a long time until we’re comfortable enough to leave her in someone else’s care again.

For all these reasons, I sincerely hate you.

I wish we never had made your acquaintance.

As a parent of a child with Epilepsy, I will fight this fight with my child against you.

We hold onto hope that someday a cure for you will exist, as we long to banish you from our daughter’s life.

Homeschool, the Spectrum and Maintaining Sanity

The transition from elementary school to middle school is tough for any child.

When a student is on the Autism Spectrum and suffers with Anxiety, the hardship of change is greatly magnified. Going from an environment where he knew all of his classmates and the entire school staff, the transition was overwhelming for my son.

Moving to sixth grade meant no longer feeling comfortable in his surroundings. When his accommodation plan fell by the wayside and his new school was unprepared and uninformed, his world quickly became unraveled.

The move brought a new world of sensory overload and anxiety over social interactions. 

There was no familiar Principal, school nurse or Resource teacher to look after him each day.

He was no longer in a safe environment with people that knew his personality and understood how to best relate to him. I can only imagine how alienated this must have felt for him, as he tried his best to adapt.

After three weeks of trying to acclimate, behavioral issues stemming from elevated anxiety, and some serious meltdowns, we decided that enough was enough.

We decided to homeschool our child.

We are now two years into the homeschool experience. We chose an accredited on-line homeschool program.

Our schedule is flexible, and we can set our routine as we see fit. There are no crowded hallways, ringing bells, confusing lockers or noisy classrooms in our home. He isn’t tasked with completing his assignments without help. 

I act as his Shadow and he is not left to navigate alone, in anxiousness. 

If he needs ten energy breaks throughout the day to run outside and burn off extra energy, they are granted. 

If he needs to stand or even walk around the room while we study, that’s perfectly fine. 

He feels safe at home and I feel secure knowing that he’s getting a good education, without any outside stressors.

Has it been all unicorns and rainbows? Absolutely not.

We do have our struggles and sometimes I have to count to ten and practice my own coping skills.

I am having to relearn course material that my brain has long since forgot, and it’s very frustrating.

I have to remind myself daily to keep patience and to carefully choose my battles.

The bottom line is that he is thriving and for now, we have found a favorable solution to our middle school misadventure.

For any parent in our shoes that is considering this option, I offer these tips (and remind myself to do them daily) to maintain your sanity, and to help your child be successful:

Reach out for help when you feel overwhelmed.

Our homeschool program has certified teachers, tutors and counselors on hand, ready to assist.

Establish a consistent daily routine, but allow yourself and your child room to be flexible.

Take breaks for yourself and for your energetic child…use a 30 minute run together as your Physical Education activity!

Keeps plenty of strong coffee on hand for yourself.

Don’t throw in the towel when the going gets tough.

One day may be extremely difficult, but I guarantee, you’ll see plenty of positive days too.

Special Clothing for Special People

Manipulating buttons, zippers, and snaps can pose quite a problem for many individuals with special needs who would like to become more independent by being able to dress themselves.

Likewise, parents of children with disabilities and special needs who may never be capable of dressing themselves, often find trying to dress their children in clothing designed for the non-disabled to be difficult and cumbersome

Those with sensory processing disorders can find standard clothing irritating and uncomfortable.

Seams, certain fabrics, and tags can make traditional clothing a nightmare for people with sensory processing issues

For these individuals, adaptive clothing may prove to be very helpful!

Adaptive clothing is specialized clothing designed with the unique needs of individuals who may not have full range of motion, the ability to dress themselves, or who have sensitive sensory systems.

Modifications made to  traditional clothing designs could include:

Replacing buttons and shoelaces with velcro

Placing closures on the back rather than the front of garments

Front closing bras

Side opening pants

Clothing made with special fabrics

Seamless socks

Tagless shirts

Weighted vests

Compression leggings

If you or someone you know could benefit from adaptive clothing and would like to purchase some specialized garments, here are a few tips to keep in mind while shopping:

  • If you are shopping for someone else, be sure you know what types of modifcations that person needs and wants, their size, and color preference.
  • Also, try to take that person along with you if possible, so they can pick out clothing that appeals to them.
  • Make sure the items you choose are similar to the popular styles you see people wearing today.
  • Be sure the article of clothing is sturdy and made to last, so look for high quality fabrics.
  • Look for soft fabrics

 

Below are a few resources for Adaptive Clothing:

For a list of special needs clothing resources please see this list on The Disability Information and Resources website.

For a list of special needs fashions for children, check out the list on the Children with Special Needs website

Adaptaware: Clothing for Care (UK)

Rackety’s: Clothing for children and adults with disabilities

Adaptive Clothing Showroom: Clothing for disabled adults and children

Tommy Hilfiger’s Runway of Dreams: Adaptive clothing for kids

Tummy Tunnels: Clothing for kids with feeding tubes

More resources for kids with feeding tubes

Silvert’s: Wheel chair clothing for men and women

Kozie Clothes: Adaptive medical and sensory clothing

EZ Sox and Undeez: Socks and underwear for sensory kids

Independence Day Clothing: Adaptive clothes for teens, tweens, and young adults

We Made It, Folks!

What I find with these holidays is that you have far less appointments too and appointments are often what fills up our week and gives us a strong feeling of routine.

The lack of routine has been a bit of a surprise for all of us.

I looked at my diary yesterday afternoon and was astounded to discover that September includes: An MRI, a surgical consultation, a gastro follow up appointment, physio weekly, speech and language, a specialist physio appointment where we discuss measurements and equipment, a pediatric appointment and a TAC meeting.

I feel overwhelmed and unprepared already.

Things that can set my anxiety off are: Amy’s tantrums/unpredictability, driving to places, the prospect of parking issues, being late and so on.

I get so bad that it affects my sleep and keeps me up at night.

I want to make lists about lists I need to make, I want to do research so I go into the appointment not completely clueless and so on.

I can’t decide if I am looking forward to it or not.

I keep feeling these waves of grief at the thought that the summer holidays didn’t go as I hoped it would.

Most of our days out involved inexplicable irritability from Amy to the point of having to constantly change location or activity.

It has exhausted and upset me more than I would have thought.

We had one trip to the zoo where she cried inconsolably the whole way there and all the way around the zoo.

I had tried to be optimistic and kept telling myself, “She will be OK after she’s had her meds,” or, “Maybe she needs a nap, let’s carry her for a while,” until my reserves of optimism were depleted and I began to cry.

Days out are hard anyway, even just with worries about wheelchair access and packing supplies and ensuring everyone is prepared.

I worry when she cries, will she then choke and be sick and will she aspirate, will she get a chest infection and have to go to hospital?

Usually not, but it happens.

You know when everyone is staring at you because your child is crying?

People sometimes tell me not to care what people think and that they probably aren’t staring… but genuinely, we had quite the audience.

We kept the trip short, came home, and were saying we would never be doing that again.

We will, of course, because you can’t give up and you have to keep trying.

When your stress levels are heightened in this situation and you have exhausted every option to try and diffuse it you can so easily go into panic attack mode or crying mode.

I went for both on this particular trip.

I started to notice all of the pregnant mums or mums with new-borns staring.

All I could think was 1) how much I couldn’t have done that when Amy was a baby and 2) It brought back all my upset about my miscarriages and the troubles I am having trying to have another child.

I notice the children Amy’s age fascinated by everything and having a great time and also staring because we are causing so much noise.

I see them have tantrums but it’s over things like sibling squabbles or who gets to go where etc. and these problems wash over or if they don’t at least it will change in time.

Her irritability at the moment seems to be hindering a lot of things I want to do with her.

It isn’t just typical toddler irritability, it is next level and once she is upset that’s it, you just have to ride it out or wait for her to fall asleep. It is heart-breaking.

I so much just want her to enjoy life.

So far my reasons why she might be upset are the following:

Communication issues (she cannot speak)

Frustration (she wants to do something but can’t explain what or her body isn’t allowing her to do what she wants)

Muscle pain from high tone, tired (she doesn’t really nap well if at all and gets very upset when tired but won’t sleep)

Seizure activity (eeg came up okay but had a few scares)

Feeding issues (reflux, digestion issues, 24 hour tube feeds can’t be nice on the stomach)

Boredom (typical toddler behaviour?)

It’s quite the list isn’t it?

I think I could probably add more to this and will actually be writing it up on paper to show our pediatrician as these are all things various professionals think may be bothering her.

I am looking forward to getting back into the routine.

Maybe this will help our current situation and hope desperately that next summer is a more memorable and fun one.

When we have a bad day out it either makes you not bother again and get bitter and jealous of people who seem to be having a great time; or it makes you anxious every time you go out and you know your child will feed off that anxiety and most likely end up having a tantrum of sorts.

We have had some lovely moments as well this summer, and indeed some lovely days out too.

I just hope that next summer has much more of that.

A happy child = happy parents.

The Outsider

Baby showers, wedding showers and even holiday dinners almost always leave me with a feeling of sadness and exclusion.

The stories shared of the perfect childbirth experiences, healthy beginnings and lives of normalcy turn me into someone visiting a foreign land or planet… with no translator.

I listened to a lady at a shower once explain how she went forward with having her tubes tied after childbirth, because her baby was, “normal”.

Thinking back on my own childbirth experience filled with unanswered questions, weeks in the NICU and scary diagnoses, I am desperately unable to relate.

The stories of the joys and wonders of breastfeeding are lost upon me.

Hearing how quickly babies transitioned to finger foods from purees leaves me speechless.

I shift in my seat uncomfortably when discussions shift to milestones and feats mastered by their little ones.

I have no place in the conversation, as we’ve yet to experience the first steps or the first word, after five years.

Achievements that I hope will come someday for my child, will be years later than all the other children being discussed.

Play dates and after-school sports are another topic that I escape from chatting about.

Smiling and nodding is all I can manage, all the while trying my hardest not to slither under the table.

No one else is bringing up social therapy groups or physical therapy sessions.

I hear no talk of bullies or the lack of adequate accommodations in school.

There is no mention of countless hours and dollars spent driving their children out of town for the best specialists.

If there was, I would participate and I would be the life of the party.

I would gracefully join in the conversation of motherhood being exhausting, if the others understood what it’s like to have a child with epilepsy….and endless nights filled with anxious worry.

I have two beautiful children. I could talk for hours about them and how wonderful they both are.

They complete me and they are my entire life; my absolute world.

Our life may be completely different and unfathomable to most, but it’s OUR life. It’s our NORMAL.

We celebrate great happiness and joy in our family, but we also shoulder much sadness. No one wants to sit and listen to a, “Negative Nellie”, at a party, so I shield most of the sad and difficult parts from others.

If I’m ever at a function and the discussion is geared towards children, I do genuinely want to listen to others’ experiences. On the inside, I have a whole lot to say.

I appreciate their stories, even when I can’t connect to them.

During these conversations, you’ll typically find me sitting quietly, and observing – feeling like the outsider.

The thing about special needs parents is that we have so much love and pride for our kids, our hearts would burst if we shared it all.

Sometimes, we sit and hold tightly to our experiences.

On the occasions when I do stumble across other parents in my shoes, I find relief in no longer being the outsider.