This is day 28 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Chantale from Virtually a Teacher is guest posting about self-care for the special needs parent.
How did I get here? Sitting on my bathroom floor, sobbing. I look up and in the mirror I see a person that I don’t recognize. A pale face from staying inside too often, eyes with black circles under them from years of sleepless nights, an overweight body from overindulging on comfort food and thinning hair from overwhelming stress. My heart is beating quickly, I can’t stop crying and I feel so alone. Who is this person? How did I get here?
I am a special need parent. Both my sons have autism. I love my children with all my heart. They are the same precious little boys I had before I heard the words autism spectrum disorder. So that label doesn’t define them in my eyes. I want to give them the world just like any parent wants for their child. The only problem is I put so much pressure on myself. While I’m trying to make them happy I forget everything else including taking care of myself.
Our special needs journey started 7 years ago when my eldest son was born. He was born premature and had many medical complications including pneumonia, a pneumothorax, an intraventricular hemorrhage and hydrocephalus. He was hospitalized for three months and we almost lost him a few times. I wished I could change places with him and I begged God, that if he had to take a life, to take mine instead of his. It was the hardest time of our lives but it was also the start of the greatest learning experience for us. During that time, nothing mattered other than our son. When you go through the heart wrenching experience of watching your newborn baby fight for his life, your view of the world changes. Things that used to be important just don’t matter anymore.
I guess that’s why material things, being stylish and perfectly put together became unimportant. How could those things matter to me? Those things couldn’t make my son healthy, they couldn’t save his life so how can I care about them?
The last few years have continued to be stressful. After being discharged from the hospital, my son was diagnosed with auditory neuropathy and then with autism. It was just around the time I gave birth to his little brother when he came home from school with bruises on his arms. He was restrained by his teachers for 2 hours and for almost a year he refused to leave the house for fear of going back to school. He had frequent violent meltdowns which were very difficult to control and all the while I was trying to keep his infant brother safe. We decided to homeschool which was a difficult decision to make considering that I work outside the home. I had to cut my hours by half adding financial strain to the mix. The most recent stressful event was my youngest also being diagnosed with autism spectrum disorder this past May.
No matter how badly I care for myself, I feel I’ll always have the strength to care for my special needs boys. Except that is not true, otherwise I wouldn’t be crying on the bathroom floor. Parents of special needs children carry a heavy weight on their shoulders.
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It is a weight that will not go away so we need to keep ourselves strong physically and emotionally to be able to carry it. I don’t realize how stressed I am until I let out the anxiety with the ugly cry. I don’t think I need a break until I actually take one. I don’t like to ask for help until I feel so alone and overwhelmed. That’s when I realize how tired, stressed and unhealthy I have become and how badly I need to change that. My little angels depend on me. I need to be healthy so I can be there to care of them.
Ways for Special Needs Parents to Recharge and Reach Out
Special needs parents are like a pitcher of water. We keep pouring out our energy for our children, the household, work and everything else. It’s no surprise that eventually there’s none left. We are left empty and we have nothing left to give to our children either. We need to find ways to fill ourselves back up with energy, joy and happiness so we can be full of wonderful things to give to pour out to our children. It’s easier said than done but so important. It doesn’t have to be much to be effective. It could just be 30 minutes to go take a walk or 15 minutes to take a hot shower. I did that the other day. My mom came over and took my eldest to the backyard while the little one was napping. I can’t remember the last time I took a shower without the kids crying and banging down the door. It did wonders for my mood! The important thing is to be consistent and to follow through because it’s too easy to forget ourselves.
Here are some things that can help you recharge:
1-Have a date night
2-Go out with some friends
3-Get a massage
4-Go for a walk
5-Visit a nature park
6-Go to the gym
7-Go window shopping
8-Get a manicure and pedicure
9-Try something new like rock climbing
10-Go to the movies
For those who don’t have babysitters:
11-Call a friend
12-Listen to music (wear earphones if your children are sound sensitive like mine)
14-Watch one of your favorite movies
15-Read a book
16-Take a nap (while the other parent watches the kids)
17-Take out those half done craft projects
18-Light candles and take a long hot bath (while the other parent watches the kids)
19-Pray / Meditate
20-Write (let all your emotions and thoughts out)
Only we can help ourselves be well. Eat well, sleep enough (when possible), keep a positive attitude, accepting that we are not perfect and seeking support from others. Our family and friends can encourage, support and love us.
21-Turn to the person who fully understands what you are going through, your spouse. Your spouse is the only person living in the same environment and facing the same challenges.
22-Seek out family and friends and if they offer to help, don’t be too proud to accept. This is bad habit of mine that has only brought me total exhaustion. Make sure to tell the person what you need from them. There’s nothing wrong in telling your friend: “I don’t need any advice, I just need you to listen.”
23-If you are over your head and feel the need for counseling, you can go to a psychologist. They can give you some tools to start taking control over your life and feel positive again.
24-Join a support group. I never thought I would be able to make time to attend a support group but I am so glad I did. The other moms and I bonded over our similar experiences and became friends.
25-Facebook support groups. If you don’t have a support group in your area, consider joining support groups on Facebook. It is so important to give parents a safe place to support each other in a positive way so with that in mind I created the Special Needs Parents Support group. I think that the best resource for a special needs parent is another special needs parent. They have been were you have been and they know what you are going through. Feel free to send a request to join the group.
Special needs parents have so much stress in their lives. From the never ending appointments and financial troubles to the powerless feeling of not being able to help your child and not knowing who will care for them when you’re gone. It’s ok to pat ourselves on the back for all we do for our kids instead of feeling bad about all the therapy and treatments we can’t afford. It’s ok to feel like a good parent because we are letting them do what they love instead of feeling guilty that we are letting them “stim”. It’s ok to stand up for them because we don’t want them to be bullied instead of feeling bad for over protecting them. It’s ok to just be mom / dad sometimes instead of playing therapist, teacher and doctor all the time. All is possible for the parent that loves and cares for their child. They will grow and flourish if they know they are loved! I’m picking myself up off the floor and committing to recharge and reach out. I hope you will too.
Chantale Dupuis is the proud mother of two boys with autism. Although she homeschools them, she is constantly learning from her children. In trying to find ways to teach her children, she has found her passion. On her blog she shares the activities she makes and adapts for special needs. When she is not busy playing with her children, she enjoys interior design and photography. You can read about her special needs homeschooling experience on her blog www.virtuallyateacher.com.