ms. fresh fish


Guest Post: Life with Bean, our son with Down Syndrome
July 27, 2013, 7:55 pm
Filed under: family, Guest Contribution

Comment from Lori: This third of my guest posts has come about like the previous ones – a personal email that I felt so profoundly impacted by and felt are such important words and messages for others. In this case, my friend – quite possibly the kindest person you could ever meet on this planet – with her husband (also super awesome), opens up, shares, and asks for support for their family. They have three children: A six year old, a three year old, and a six-month old. The three year old was diagnosed with Down Syndrome about a month after he was born. This diagnosis altered their life-path forever. In addition to their awesome parenting and incredible honesty, it’s their commitment to self-care and happiness that I find most inspiring.

________________________________________

Friends and family,

PLEASE READ AND FORWARD THIS MESSAGE TO FAMILY, FRIENDS AND PEOPLE IN OUR LIVES.

We have decided to reach out to our families and friends and open up a part of our lives that we don’t always share. For those of you that are at work or are perhaps distracted by other things right now, we suggest that you continue to read this when you find a moment of quiet. We realize that what we are about to say may seem to be “out of the blue” and will take you through a range of emotions.

Our intention is not to overwhelm, shock or have you feel sad. It is simply something that we have wanted to do for so long and feel that we are finally ready. I can personally remember a time following K’s diagnosis (Down Syndrome) where I cried in my sleep. I read every memoir and novel written by other mothers and kept wondering to myself if I would ever find the peace and serenity as they did. I believe we have.

So, here it is. A candid and honest sharing of our lives. We want to share our journey as parents of a special needs child.

Communication

After reading many articles outlining strategies for supporting families with special needs children, we decided that it is important to communicate more effectively with those in our lives. Over the past three years we have learned a tremendous amount about ourselves and our inner strength that has helped us through some very challenging moments. We have realized that having others understand what we are going through and to listen when we want to open up, is possibly the best and most needed way to support us.

Before continuing, we want to ensure that this is not intended to evoke pity or sympathy. We are not asking for help. No one has done ANYTHING wrong, or has hurt us, or has offended us in ANY way. We are extremely fortunate to be surrounded by such warm and loving family and friends, who have been nothing but accepting of our “Motley Crew”!!! And no, neither C (Hubby) nor I are going crazy or off the deep end!!!

So, we have decided to outline a few aspects that may explain why we do things in a certain way, why we avoid certain situations, or may seem to be noncommittal at times. Hopefully this will help everyone understand our daily life as parents of a special little guy we refer to as “Bean”.

An Emotional Journey

We see Bean as a gift, our little angel. He is a blessing who enriches our lives. He has given us the ability to experience the most emotionally uplifting and beautiful moments. However, we also experience absolutely devastating, painful and sad moments. Each day presents us with situations that we cannot prepare for; at times we are left feeling helpless, defeated, sad, happy, excited or frustrated. We try and remain positive, but sometimes we are simply overwhelmed. If we appear to be “out of it”, quiet, or don’t return phone calls at times, this is why.

A Physically Demanding Day

Bean is active, on the move and never remains seated (unless eating goldfish crackers!). The combination of having a very active child with poor gross motor skills and an intellectual impairment means we can never take our eyes off of him. He cannot be unattended. Ever. Our little guy can make some terrible choices; he has no fear and doesn’t understand danger. He gets hurt all day long. If we decline to go out or decide to remain at home, it is probably because we are tired.

A Team

Hubby and I rely on each other for support. We rely on each other to manage our stress and fatigue levels. Our emotional and physical health is extremely important to us, especially as we play the role of both parents and caregivers. We are at high risk for burnout, health problems and even divorce. We are still trying to return to the balanced life that we had before our lives changed. We don’t get breaks. We need to take care of ourselves and often times need to change our mind about plans.

Troubleshooting Activities

Simple activities can be very difficult for us. It may not be obvious to others, but we are constantly trying to predict, manage and figure out strategies that will make our daily activities easier to manage with Bean. Sometimes an invitation to someone’s house may be too stressful due to a large group, the presence of food, the layout of the house, etc…An outing, the pool, the park can all be overwhelming depending on dozens of factors, including our own fatigue level. Sometimes going somewhere for a couple of hours is not worth the stress and physical effort that we need to expend, or the stress that Bean may experience.

A Day at a Time

Repeating this to ourselves helped us through the dark weeks and months followin Bean’s diagnosis. Our lives continue to be unpredictable.  A day can present many challenges that leave us suddenly unable to cope or manage simple activities. This is why we may cancel at the last minute or change plans. This could be due to fatigue, an emotional therapy session or being frustrated and tired with helping Bean with every aspect of his development.

Asking for Help

We spend much of our time fighting a system with inadequate facilities and services for special needs children. Hours are spent each week trying to navigate the health care system, seeking help, professionals and specialized therapies for Bean. We have begged, cried, yelled and pay thousands of dollars in order to get him the team of professionals that he has today. This constant quest for help and to stay informed of the latest therapies and research can also leave us drained. Sometimes we need to just be together at the end of a day. Reading this and sharing it with others, will help. Please share and pass it on.

Multiple Therapies

Bean attends a preschool for special needs children, receives Speech and Language Therapy 1-2x/week, visits a feeding disorder specialist 1x/week, and receives Occupational Therapy and Physiotherapy. We visit the Children’s Hospital for blood work, Ophthalmology, Ear Nose and Throat Specialist, Specialty Dental Clinic and perhaps a new referral to the Feeding Disorder Clinic. We no longer need to see a Cardiologist. Constant contact with the special needs community can leave you feeling emotionally drained. We fill out forms, read reports, and listen to professionals speak about Bean’s delays and percentile ranks. It can be very clinical. We often need to revisit his birth, complications, medical history and the story of his diagnosis. All day long we implement strategies, intervention plans and are constantly teaching him and interacting with him in a purposeful way.

Normal Life

Our lives are demanding yet extremely rewarding. We face difficult moments all day yet try our best to provide the best for all three children. We are always open to talking, answering questions and explaining anything about what we face. This is our life, our reality. It isn’t easy but we are happy. We need to know that we can share our experiences with you and that you feel that you can ask. We have so many similar experiences with everyone, but can sometimes feel very isolated. Bean’s development is taking us on a very different journey. After reading this, please never feel like you have to watch what you say around us. Things are just different for Bean.

It is also important to realize the struggles and difficulties that Bean faces. Overall, we are lucky that he is healthy. He is making progress in all areas. We are sharing this with you to educate you and to ask that you keep the following in mind when you see how we interact with him. Please support us by reinforcing the same strategies.

Down Syndrome…Explaining it To Children

Down syndrome is a genetic disorder. We each have 23 pairs of chromosomes. However, Bean has “extra information” (genetic DNA) that was given to his 21st chromosome, resulting in what is called a trisomy (Down syndrome is also referred to as Trisomy 21). There are three types of Down syndrome; Bean has the most common form.

As you may know, Bean will be shorter than most children, be smaller and has many distinguishable features; he has small hands and feet, slanted eyes and a protruding tongue. He is hard to understand when he speaks. He is a messy eater. He can be loud, yet also bothered by noise. He is clumsy, messy and uncoordinated. We are writing this because your children will notice. This is normal.

We have spoken to A (the eldest) about Down syndrome, explaining how Bean needs extra time to learn to speak, move and to understand. The beautiful thing about having A as a brother is that he doesn’t see Bean as being different. We hope that having your children grow up with Bean from infancy, will also allow them to know and to see Bean, as simply “Bean”.

However, the kids are at an age where they are beginning to notice differences. Be honest with them. Provide them with simple answers. Give them as much information as they can handle and see how they respond and understand. We repeat many times a day that “everyone is different”.

Helping Bean

We expect Bean to learn to share, take turns and to calm himself down when having fits, just as you do with your children. Watch how we handle these situations and do the same when you need to.

Try and imagine yourself speaking to a 9 month old. Don’t speak in sentences. Use one or two words at a time. Don’t be fooled when he says “yes” or “no” to a question, he doesn’t always understand. He often repeats the last word you say to him, leaving people to think he understands. This can be dangerous if you assume he is capable of doing something.

Bean’s Struggles

Down syndrome is accompanied by an intellectual impairment, the extent of which, we still don’t know. Bean has associated global developmental delays, which means that his gross motor, fine motor, language development, sensory system and many other aspects of his life are delayed. We refer to this in terms of mild-profound delays.

As many of you know, one of the hardest challenges we face is feeding. Bean has a feeding disorder, as well as sensory integration disorder. We see a specialist for this, work with an occupational therapist and are potentially being referred to the Children’s Hospital for further testing. It makes meal times and snack times extremely challenging. We can’t go to restaurants and need to avoid some social occasions around food.

Simply put, Bean hasn’t learned to chew or swallow food correctly. In addition to having low muscle tone (hypotonia), and frequent congestion from birth, he has learned that eating is hard. It is not pleasurable. He has an extremely limited food repertoire, which is concerning to his Pediatrician and feeding specialist. We are working on it.

It has been extremely stressful and difficult for us but we are finally following a therapeutic approach. It may take years for him to learn to be near food, to learn to chew and to try new foods. Please do not offer him food. It stresses him out.

Happiness

Despite his challenges and struggles, Bean is possibly the happiest child. He is pure, loving and a blessing to us all. He will touch each of you in different ways and will enrich many lives.

He sees life in an uncomplicated, simple way. He is protected by an innocence that allows him to enjoy each moment. He has taught us patience, perseverance, kindness and unconditional love. We have learned to slow down our busy lives and to spend our moments together enjoying what really matters:

Each other, our families and friends.

Life with Bean is full of walks in the rain, playing in the backyard and waving to school buses. We spend a lot of our time retrieving items that he throws into our sink or cedar hedges. He is always ready to dance, talk on the phone or play mini sticks in the basement. He loves parties, people and his big brother and baby sister.

He brings us happiness in moments of sadness and provides comfort when feeling frustrated and overwhelmed. He teaches us each day that moving at a different pace is ok.

If you ever find yourself feeling down, know that you can stop by anytime for a bowl of goldfish, a popsicle and a seat on our “crunchy” cracker couch. Bean will spend time with you, love you and bring you a sense of peace.

We have read this dozens of times. We have laughed, cried and have now given each other a nod of approval. Upon sending this to all of you we hope to feel a sense of relief, a release of stress. It will make situations easier as we no longer have to explain.

You will now understand why we do the things we do and why we may take time for ourselves without notice. We need each of you to continue this journey with us and to love us no matter how different things may be at our house. We are doing the best we can.

We want to remind all of you that nothing should change the next time you see us. Don’t act differently, talk to us differently or say anything at all. Please do not respond to this message. Just keep stopping by, our door is always open. Continue to share your life with us. And most importantly, remember to laugh with us.

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10 Comments so far
Leave a comment

gahhhhh…. beautiful!!!! As the oldest child of a family whose youngest has Down Syndrome, this was a touching and REAL post. My family would “get it” in an instant. He is 37 now. We went through those years of never letting him out of our sight. We cried tears of sadness, laughed with tears of joy. He has a job, loves hockey games and has the most joyful, wonderful spirit. The work they are doing with and for Bean will come back a thousand-fold!

Thanks for posting Lori!!!

Comment by lindamgeorges

Lovely addition to the post! Thanks so much for sharing, Linda! I’ll pass it on to Bean’s parents.

Comment by freshfish

This post was compelling! Thank you for sharing. I appreciate the frank and honest way it was written. As a person with no experience with anyone diagnosed with Down syndrome, I had never realised all of the challenges these children face. I truly admire these parents for sharing their story.

Comment by Crayon

That’s exactly one of the things I was hoping to share! And so were Bean’s parents, who were happy to have it posted. Pass it along anytime you think it will be helpful!

Comment by freshfish

A beautiful and compelling post. Very refreshing to receive such candour. Written with love and compassion. Thanks LB, for sharing. With permission, I too would be happy to blog Bean’s story.

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