Here’s a shout out to any special needs parents out there. Your life isn’t easy, we know. There will be times when you feel tired and exhausted – the needs of your child are wide and varied, and there will be times when you might struggle to cope. There will be times when you don’t know what to do for the best for your child, especially when the advice you receive is inconsistent. Here are some words of care for the special needs parents out there!
There will be times when you envy those ‘typical’ families. You know, those parents whose children don’t rely on Depends diapers and other incontinence supplies long after infanthood. Now don’t get me wrong. I don’t begrudge typical families, but there are days that it can be hard to watch, right? Sometimes we all get jealous of those parents whose children develop at rates that seem impossible for our children. Guess what? It’s perfectly okay to feel that way sometimes. We. Are. Human.
And there will of course be times when you feel guilty for feeling any kinds of negativity. But you need to know this. You are not alone. When you are going through difficult thoughts and emotions, let the fact that you aren’t the only one be of some comfort to you. Here’s what you need to do.
Find your tribe
You need to find those people who can help you when you need it. They might be family members or friends who can relieve you of some of your parenting duties. You might find that parents you know from special needs groups your child attends are willing to do a swap once in awhile.
The important thing to remember is that you need those people who know exactly where you’re coming from. The moms in the trenches with you can offer you experienced advice and wisdom. They might be people you know from Facebook groups for high-needs children; those people who can help you tap into resources you may not be aware of. They are also great for the much needed vent session.
Vent sessions with other moms who know will actually make you a better caregiver. I used to feel guilty for talking negatively about my child, other moms, the school, therapist and so on. But, you know what? Sometimes you have to let a little steam out of the kettle to make the teatime enjoyable. And you know what? Those people probably vent about you too at times. Venting is a necessary part of being human, and as long as you are not crossing the line by being mean or spreading gossip, its a very healthy thing to do.
It is so important to find moms who are there with you and fully understand. Talk to them, ask for help, and benefit from the practical and emotional support they can offer you. You will wonder what took you so long! Trust me.
Apply your own oxygen mask on first
You’re a person too, with hopes, dreams, and needs of your own. You need to care for your family without burning out, so remember to find time for yourself. If you homeschool your child, can you enlist somebody to help you? You might then have time in the day to do your own thing.
Maybe your child attends special needs groups, or has a regular carer that offers you respite. Can you find time to make ‘me-time’ during these occasions? The answer is “yes, you can.” You just need to give yourself permission to be a little selfish with this time once in awhile. Is your child in a therapy session? Don’t use that time to get work done or phone insurance companies and school personnel. Instead, bring your favorite book and read or maybe put some headphones in and listen to your favorite music.
If you have a partner, can they shoulder some of the parenting responsibilities so you can have some time off? You need time to recharge your batteries, so look for those moments when you may be allowed time off to give you chance to revitalize yourself. Maybe all you do with that extra time is sleep. Sleep is good. Maybe you just need ten minutes of peace. Allow yourself that ten minutes.
Find reasons to be thankful
Being a special needs parent isn’t easy, but take the time to be thankful for the child in your care. Sure, they may be challenging at times. Sure, they may be a source of worry. But remember the love you have for them. Remember how much they love you, even if they don’t always verbalize it.
You have a tough road ahead of you, as do all parents, but the journey is worth it. Provided you do ask for help, and so long as you take time out for yourself, you should be able to remember the joys of parenting a child with special needs. List all of the things you are thankful for, and remember these things when life seems to get you down.
Learn to celebrate the small stuff. Recently my daughter learned how to change the toilet paper roll all by herself. Yes, she is 16. Yes, most kids learn this at a much younger age and she would be laughed at by other teens for just learning this now. But, not if they truly knew her. She has cerebral palsy and her right hand does not work. This skill is tough with only one working hand. So we celebrated that win in her life. Find the wins in your child’s life and celebrate the heck out of them. And, if no one is celebrating the wins with you, you can email me, and we can celebrate together.
You got this!
You can cope, because you have coped before. You will overcome the challenges ahead of you, because you have already done so much. Your life isn’t an easy one, but there will be rewards. So heed our advice, especially if you are currently feeling down. Draw on the support of those around you. And look at your child with loving eyes, and remember that despite the setbacks you and they may face, the journey to overcoming them is totally worth it.