special needs Archives • Stitches Quilting

Strengthen Parents of Special Needs Children

Day 1: People feel just like YOU – We have each other!

Parents of Special Needs Children are some of the strongest people that I know. We are a breed of people that are different from others. We are tired, exhausted and spent being pulled in many directions. There is enormous responsibility because no one is going to take this path with our child.

Disappointments began when we noticed that our child’s growth or development just wasn’t quite right and then more disappointments to follow when least expected.

We celebrate and appreciate moments that parents of typical children may never even notice. We grow in ways that we never imagined, developing abilities beyond our foresight. Being consumed taking care of others, we may not even know who we are anymore.

We may feel nervous asking ourselves are we doing too much, too little, the right thing, or are we focusing on the completely wrong thing? We try not to step on anyone’s toes as we advocate for our children. How do we network to figure out what is right for our child to reach their potential?

We juggle the impossible of raising our child/ren to their fullest potential, accessing resources for their development, their siblings, our spouse and finally ourselves.

I remember when my son was diagnosed with a disorder that would most likely cause significant development and medical issues for him. I was stunned, numb while activated to search everything to learn what I needed to do to help him. How was I stunned, numb and yet activated to a higher level than I have ever been?

During that time in our little family, our life revolved around his diagnosis. Time passed with his disorder became just a part or appendage of our family that was a part of us. Later we got in the rhythm of existing as a family but taking care of the specials needs when needed. Occasionally there would be unexpected hiccups that we hoped wouldn’t impact our son. Naturally we shifted our routine to mobilize but then those hiccups became routine.

Somewhere though I think on this path we tend to lose part of ourselves taking care of critical along with other needs of the family. Larger life ordinary events creep in, we lose a spouse, death of a parent, divorce, remarriage, step-children, more children, etc.. We once again shift our family unit and the needs of our unique family into these unexpected events.

Something happens to us as we drive and push the momentum of caring for so many others that we sometimes stop feeling or at times feel too much. We disappear, become invisible and our needs …. well our needs – we don’t even think about our needs anymore. That is when I have seen us lose something deep within us.

Then we become so strong and caring for a chronic disorder that people don’t come around to help anymore. We are long forgotten and even avoided. When someone asks us how we are doing or how our child or family is, they are being polite but don’t really want to know and truthfully couldn’t even imagine what our world is even like.

We need less strength at time and allow ourselves to soften to feel parts of the world that we don’t even notice passing by us. It is then that we begin to reach out and participate in them again.

I will be writing for the next 31 days in the month of October about strategies that can enable us to avoid chronic dullness or burnout as caregivers of long term disorders.

I’ve been a parent of a special needs child/ren since 1996 and I may have another 50 more years ahead of me. As parents of special needs children, we can relate to each other in ways that our own extended family members can’t possibly understand.

We are all in different stages of this journey. Let’s break those stages down and when a stage might return we can understand what we need. I want to help identify those stages, feelings to empower ourselves with strategies to get through those stages in the healthiest way possible.

I want to learn from all of you too, your comments and shared journey is important. I learn from my experiences and other caregivers I know with special needs children and what strengthens them.

I want you to know that I know you are out there and even though what I may speak of in a particular stage may not be you, I want to learn how you get through it. I have crossed paths with many exhausted caregivers that just didn’t know where their next drop of energy would come from. We spend a couple hours sharing and I think we both go our separate paths strengthened.

I will share the deepest part of my heart with you and I hope that you will feel comfortable sharing parts of yourself. I have been through a lot; have seen a lot and I am certain that you have too. Share your story… share your heart and what has helped you during different parts of your journey. We will all grow together… you can comment below or email me personally at deanna@stitchesquilting.com For this first post please know that there are many of us that feel different but similar things at different times and find comfort that we are not alone.

Let’s start this journey together and identify more strategies for our future. Let’s not just exist but live uniquely as we navigate the windy paths. Each day will have a message and then printables that you can print off and write down how your unique path has carved you and how you have carved out your own journey.

All the BEST!

Deanna

For the 31 post summary of Strengthening Parents of Special Needs Children click here.

I organize my life and balance my responsibilities so I can enjoy it! Quilting is always waiting for me in the background if life does get crazy and I need to put it on the back burner.

Quilting motivates me first of all so I can live a long healthy life to execute and complete all the amazing things I dream to create. I love my family and want to be healthy like eating well and exercising so I can hopefully avoid unnecessary disease and pain to be fully functional and capable of doing the many things I day dream about long into life.

There are so many ideas buzzing around in my head that I want to execute that I hope that long healthy life is waiting for me.

That’s the beauty of quilting; there are so many different things you can do from piecing a quilt top together, strip piecing for easier quilt, to complicated piecing, machine appliqué, hand appliqué, domestic machine quilting, long arm machine quilting, hand quilting, hand piecing…. too much to name.

Secondly, quilting motivates me to live an organized life. By living an organized life, I will have more rewarding time stitching away.

Thirdly, quilting is my reward! I get every room put back together after an evening of children being home, clean the kitchen, throw a load of wash in, prepare dinner, get necessary mundane tasks completed like paying bills and then quilt, quilt, quilt away! It feels great; even if it is only for a short bit of time.

When I worked on my master’s degree while at the same time worked at my husband’s office and managing kiddos at home, there was not much time for quilting. There was just no room for creativity to flow BUT I longed for it. I couldn’t wait to finish and for life to settle down to enjoy the colors and fabrics and creation of beautiful things for loved ones. There is a time and season to all things. Well as I was working on my master’s thesis and to break the barrier for motivation, I bought some special fabrics for a quilt pattern that I had longed to complete from many years prior. The pattern came from an old quilting book that I had admired and tucked away.

Then I LITERALLY slept with the fabrics under my pillow and in my bed with me every night. I would fall asleep touching the fabrics and admiring the color collection carefully fanned out, after a long day of forcing myself to be disciplined on my project. In the morning I would wake up and again touch them then turn with the determination to get my mountain work done each day.

Finally, the day arrived and I finished my master’s thesis. I had done all the work for whatever reason comfortably sitting in my bed on my laptop. When I pressed send on the email to my professor with the master’s thesis attached, I turned to my fabric and smiled!

I then went down stairs to my sewing room, dusted off the sewing machine, rotary cutter and mat and started playing with the fabrics. It was just a sweet quilt for my son that played soccer that would become a wall hanging in his room. But that quilt represented so much to me, the freedom that I know had to be creative again and the discipline I used to do hard things.

Jake's Soccer Quilt — The quilt that was made from the fabrics I slept with

I finally did it! Finished my Master's degree!

The quilt now years later still hangs in his room as he is now on a competitive soccer team. I have made several more quilts for him in his room for him to feel the warmth of his mother’s love. That mother’s love spills over as I attend all those soccer games taking amazing photographs of him with quilts to sit on or keep me warm. That mother’s love also spilled over as I went to all the amazing wrestling matches for his older brother and sat there hand appliquéing wrestlers with a tiger head and took pictures there.

Wrestling Quilt for Nick — Wrestling Quilt I made for Nick.

Quilting enriches and motivates me to be a better person and keep my life prioritized. Quilting motivates me to live a balanced life so I have time to put a healthy hobby like quilting in my routine. Quilting is so spectacular and there are just so many pleasing things to do with it!