Desiree Suter, Founder of Integrative Wellness Solutions and The Parents Cafe
I am new to blogging, obviously. I am surely not as sophisticated as some of the bloggers out there, and have a great deal to learn. But what I do know, and what I want to impart comes from my 18 years of experience as a mother, a woman, raising two children with special needs. One son has Down syndrome, and another has ADHD. It's hard for me to completely own the ADHD as a special need, because that son has no cognitive impairment, and is intellectually quite bright. His issues are more around executive functioning and focus/attention. He has never been classified in school, nor did he have an IEP or 504 plan. But, I share this to say he does have needs, and many times his needs have been more consuming and emotionally draining than those of my son with profound cognitive delays. In their younger years, their needs, ALWAYS, came before mine. Their father and I divorced when they were very young, and I found myself as a working, single-mother, all alone, in a state where I had no family and very few friends. It was HARD!
The level of daily stress I encountered during this time was immense, to say the least. As I look back on those years in writing this, I don't know how I did it without cracking. I learned along the way, but it took a toll. Fortunately, working in the disabilities field enabled me to be on top of the law, services available to us and resources that were most helpful in supporting me and the boys. But what I found was that while there were many wonderful programs for kids with special needs, there were not many for the parents, themselves. There are respite services, and I encourage you to access these services and NEVER give them up! But, unless you are connected to a support group, and sometimes even then, many parents don't ever learn about or have explained to them the emotional journey that goes along with the healing and life adjustments parents go through in having a child with special needs, and at different points along the way in raising them. In addition, many parents aren't always explained or told the importance of taking care of themselves along the way. I mean, not just explained to, but emphasized in the way that they understand that this is part of what you HAVE to do for both yourself and your child(ren)...all of them, special needs or not!
As women, we are generally the primary caregivers for our children. There are many father's, though, really stepping up to the plate and either taking more of a role at home or doing it solo. I must commend them, as well. However, this is a girlfriend to girlfriend...woman to woman discussion today.
If I can call you girlfriends, because in our walk, we share something that we deeply understand in our hearts when we meet that those without kids with special needs can not fully appreciate. While we can't change our child's disability or special needs, we find it our duty to help them achieve all they can, and be all they can be. And we should. But, when we burn out, have resentment toward, get ill, lose ourselves, lose our vitality for life, then what good are we to our children, our partners, or ourselves? We are the glue. We hold it together for our kids and our families. So, it is imperative that we hold ourselves together!
It wasn't until I remarried, and my new husband saw that I was drained, depleted, and living with chronic fatigue that sparked him to talk with me about it, and allow me to see all that I share with you today. He allowed me to see my state of being, and insisted that it wasn't how things should be. We mapped out ways for me to have a breather, delve into myself again and my interests, we budgeted for a sitter so we could have some grown-up or couple time together, we found money in the pot for me to go to the gym, we found time for me to get my nails done, and get together with friends, he shared in the cooking a few nights per week, he helps with homework and laundry, and we found vacation spots that were "special-needs friendly" so we could vacation together as a family, but also found our time to vacation alone. I started following up with my own health, and making appointments to see doctors for my own issues. I began to feel like I mattered again, and that I had more of a purpose in my role and my life...I began LIVING again...and I found a gem of a man to do life with!
I share all of this to impart to you the importance of finding time for you, finding time for you and your partner, remembering you are important and that your life was given to you, not only to give to your children, but to yourselves as well. Your life is to be enjoyed! It's okay to do so, without guilt. Find your "me time".
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