As a member of ‘Autism Support Network’ I came across this article, written by Tulika Prasad, and felt I should share it. It did resonate with our own situation and in truth brought a tear to my eye as I read, as it was comforting to see that others do experience what we do. You can read her final paragraph in the link, but for my blog, I rewrote it slightly, to reflect our own position. I would also remind readers that although it appears many articles are written for and about ‘Mums’ of special needs children, ‘Dads’ are also experiencing the very same emotions and frustrations and should not be forgotten. Read yourself into any reference where Mum or Dad is written.
Think about the day when you got to hold your little bundle of joy … you promised to protect him forever … to love him and be by his side till the end of the world and beyond … you wished for his eternal happiness … and then he was diagnosed with Autism and something changed. As your child adds age but not milestones, you are soon given a new designation – that of a caregiver.
Your child might be 6, 16 or 26 and he might still need the care and attention of a 6 month old.
As your child grows, he gets stronger while you begin to age and find yourself struggling at things that you found easy to tackle just a few years back. Your stamina falls while your stress level rises. You’ve probably missed out on your social life. You probably look ten-years older than you are because you’re not just physically but also emotionally invested in this process. When the caregiver is also the parent, as is the case with most families with a child on the autism spectrum, the stress is manifold since there is always that looming fear of what the future holds for their child after they are gone. There is that desperation to fix the situation rather than wait it out.
Though it’s easy for people to assume that caregivers are a different species altogether, they are not. They lose patience, they get tired, they feel helpless, and more often than not they are very lonely. It’s a perfect recipe for depression. It’s no surprise then that every other day we read stories of caregivers hurting themselves or the cared-for being hurt. Who is to be blamed here? The person, the society … or the circumstances ? Whatever answer you choose, the bottom line is that it’s about time we had a conversation around the caregivers.
While the world decides on what it can do to make life easier for those who spend their life caring for their loved ones, here are a few tips that might help some of us stay afloat.
1. Get some sleep/rest – Sleep deprivation can play tricks with your brain. It’s important to catch up on your sleep whenever and wherever you can. If you’re missing out on sleep at night, drop everything and take some rest when your child is at school. If that is not an option, try sleeping in your car while your child is at a therapist; let the therapist know you need that nap. They’ll understand. Whatever your schedule, be creative and find a way to get that rest. It will do wonders for you.
2. Respite – Where I live, we get limited free respite services from our county. Find out about a similar service from your county, and use it. Respite providers are trained to take care of special needs.Take that time off to shop, get a massage, go to a cafe, meet friends, go to a movie or a date night or simply sit back home and binge on your favorite serials. Don’t feel guilty about having that time for yourself. Just remember to not use this time for completing chores. Use it for yourself. You deserve it.
3. Invest in your health – Before you know it, all that stress is going to take a toll on your health. And though you may not really care about yourself so much given the enormity of challenges you face everyday, if you want to be around for long to take care of your child and also be of use, you need to be healthy. This is an investment you will not regret. This one is for your child as much as it is for you. Get your full physical done, eat healthy, eat well. Exercise. If you cannot go to a gym, which might be the case for a lot of us, try yoga, pilates and many more exercise that you can do at home. Whenever you can, go for a walk, it will help clear your mind and rejuvenate.
4. Find a place to vent – You will need it. If you’re a social media person, find a group where you can safely vent without being judged. If you prefer a more face-to-face interaction, try a support group, or just that one friend you know will not judge. But find a way to let the steam out. It’s cathartic and it’s important.
5. Cry if you feel like – I try to stay away from a lot of depressing thoughts but they tend to creep up every now and then and fog my mind. Those days I feel helpless, lonely and unappreciated. I fear the future, I resent the present and I feel like running away from everything. This is the time those tears come in handy. A good heartful crying really helps in these situations. It’s not a sign of weakness. It’s a sign of being human. Cry if you must.
6. Laugh out loud – Don’t miss an opportunity to laugh. Even in the most depressing of circumstances life gives you reason to smile. Grab that opportunity and turn it into a laughter. The sound of a hearty laughter can dispel the thickest of clouds and bring in some much needed sunshine. Watch a funny show, share a joke, laugh at a fond memory or just look around and you’ll find a reason.
7. Celebrate more often – You might not always find the success that fits the usual definition but there will be many small victories that will come your way. Learn to celebrate those rather than dwell on the failures. Your child might have just said “mommy,” or have given you a hug for the very first time. He might have tried a new food you did not expect him to or learnt to finally tie his shoelaces or went an entire day without an accident. Go on, give yourself and him a pat on the back for it. It’s your hard work. Celebrate! Caregivers face a lot of challenges and need a lot of persistence. So, when there is a moment to shine, shine up bright and loud.
8. Let go sometime – As a caregiver, it almost gets ingrained in us to be on a constant watch … to be on our toes and to be right there all the time. However, contrary to what you may expect, giving your child some space, letting them be and allowing them to try being independent even if they fail is not always a bad idea. Let them have mismatched socks once in awhile, or eat with their fingers, or not respond to their name or have that extra bit of sugar or watch a little more of the same, or lineup cars , yet again, . Give yourself a break. Let them figure it out once in awhile. Sit back and watch the act sometimes instead of being in the act.
9. Ignore others – You are on your feet the whole day and that one moment you erred and your child ran away from your side in a grocery store, there will be ten people judging how careless a parent you are. People will judge. No matter what you do or say, they will find an opportunity to do so. 100% acceptance and understanding is a Utopian concept. As long as you know in your heart that you are right and doing the best, forget what others say or think or it’s going to get really expensive for you mental and physical health. Get a thick skin and a clear heart.
As an autism [dad], and of course my wife as an autism mum, we’ve seen more days that are exhausting than days that are laid back. we’re always in a state of hypervigilance and mostly for good reason. We’ve very limited friends and we need a lot of planning for even a slight change in routine. Almost everything we do is a chore because we are in that constant fear of a meltdown, or a seizure, or incontinence. In those few minutes that we may take my eyes off of him we’ve could find him contorted with epileptic convulsions or handling something dangerous that will do him more harm. He can never be left unsupervised. I help him change, bathe, clean, eat, toilet, and practically help him with everything he does. He is not a 6 month old. He is almost 31 years old. With him around there is not a dull moment and a ‘walk’ to the couch seems like a very long journey. We probably [hopefully] have many more years ahead of us that we’ll be doing what we do for him now. Maybe not. When we eventually held him for the first time, we promised to be by his side, always and so we will … and to do that we need to take care of ourselves just as much as I take care of him.