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Parents’ Health | Pediatricians Photo Books | Physical Therapy | Products


Parents’ Health

The Burnout that Special Needs Parents Experience
Heather McCain

I think most parents probably feel burnt out at some point while juggling all of the responsibilities that parenthood brings. It seems there is always a never-ending list of things to do, but never quite enough time to get it all done. Parents of special needs children have lists that are a bit longer, but still have only 24 hours in a day.

Our lists include medication administration, regular appointments, multiple forms of therapy, paperwork, unending phone calls, IEP meetings, learning to use and then using medical equipment, and so on. We often need to feed, change, or bathe our children who are well beyond their pre-school years. We need to make sure we don’t run out of the medications that our child’s life depends on, or diapers in a size that can’t be bought in a store and must be purchased from medical supply companies. When we plan outings, we must make sure our destination will be accessible for our child. If you can imagine, I’ve only just put a dent in all the extra things a special needs parent must do, remember, or know.

Before anyone gets the idea that I’m complaining, I want to make sure to be clear that that isn’t what this is about. I’m just sharing experiences. I understand that it can be hard for those who have not lived this life to grasp what our day-to-day routine consists of (I use the word “routine” loosely) so I wanted to try to paint a picture as I’m getting into what this is all about, which is the burnout that special needs parents experience. This is something that I personally experience, and that I hear or see other special needs parents talk about often.

I’m not talking about that exhaustion at the end of a long day.

I don’t mean the needing a cup of coffee or two, or three kind of exhaustion.

I mean that deep down, all the way to your core exhaustion that creeps into your heart and mind, the kind that’s already there when you wake up in the morning.

It’s when you’re so burnt out that you can’t even bring yourself to open a piece of mail or check your voicemail because you can’t fathom adding one more thing to your list, not even a seemingly tiny task like returning a phone call.

It’s the kind of exhaustion you feel as you wake up to change a diaper and bed sheet in the middle of the night, like you have for the past 9 years. Or 20. Or 42.

It’s letting go of careers and plans.

Its feeling like you have little control over what happens to your child, when you desperately want to protect them.

It’s handling meltdowns like a pro in public and hiding in the bathroom to cry later.

It’s watching monitors until the sun rises, even though you’ve been awake for approximately 29 hours already.

It’s waking up at 4 a.m. to make it to your child’s appointment at the specialty doctor 5 hours away.

It’s the heavy guilt of being away from your other children as you sit in the hospital with one, weighing on you like a boulder.

It’s being afraid of the future but learning to live in the moment—Who will take care of my child if something happens to me? What if my child outlives me? What if I outlive my child? Breathe. My child is here with me now. Enjoy this moment.

It’s falling into bed thinking, “how can I keep doing this every day?” Then, getting up the next morning to do it again.

It’s when our health suffers, mentally and physically. Depression and anxiety are common in parents of special needs children, and lifting a growing child and equipment such as wheelchairs takes a toll on one’s body over the years.

The burnout is real. I’m not telling you about it for pity, I’m simply sharing the reality of many with you. And it has nothing to do with how much we love our children. Trust me, we love them so much that we put their every need above our own. We love them so much that we wouldn’t trade being their parent for the world. Know what else? You will probably never recognize how burnt out we really are on the inside when you see us with our children. That’s because you will see us playing peek-a-boo, or beaming with pride over them, or kissing their soft cheeks over and over just soaking in all the love they offer. You hear the praises we give them and how we gush over every little thing they do. The burnout is real, but so is the unconditional love between us and our children.

You see us in the moments that keep us going, the moments that make all of the hard parts worth every second. But rarely does anyone see us at our most vulnerable, so rarely does anyone notice how burnt out we are.

The next time you see a parent of a special needs child, instead of saying, “I don’t know how you do it” (trust me, we’re not even quite sure how we do it), or “I couldn’t do what you do” (trust me again, you could if it were your child), consider smiling and telling us we are doing a good job. Sometimes, that’s all we really need to hear to keep on keeping on.

Angelman Family Contributions

Parents often “turn off” their needs to ensure they’re fully providing for their child(ren). I encourage parents to take moments throughout the day to recharge. We parents cannot function well, or be our best, if we aren’t mentally, physically or spiritually healthy.
Annie, angel Ava, age 7, Del+
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Reference Guide for Pediatricians: What Every Practitioner Needs to Know
Susan Debrosse, 2017

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Photo Books and Blankets

Personalized Photo Blankets on Collage.com

Angelman Family Contributions

Our 35 year-old son is fascinated with photo books. He will look at each one carefully. He smiles when he recognizes people. He is not interested in other books.
Susan, AS Mom

It is easy (and inexpensive) to create personalized photo books through the Costco photo website and many other online sites, too. I always choose the hard cover option. The books are great for birthday and holiday gifts! You can add humorous captions and read through the books with your angel! While reading, you can also say, “Point to the …”
Alice, sandiegoasfwalk@gmail.com, angel Whitney, age 38, Del+

Our angel loves looking through pictures so we have a lot of durable photo albums or photo books for him to look through. Displaying photos in a clear wall hanging with picture slots is another great option.
Andrea, mcneilak98@gmail.com, angel Tyler, age 18, Del+ Class 1
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Physical Therapy

See the Resources & Education section and select Physical Therapy from the category dropdown for a list of resources.

Angelman Family Contributions

My son Brantley 2 (deletion positive) is working with a PT from First Steps. I highly recommend early intervention with therapy services for any AS child! He has already came such a long way, to get to where he is now. Also it’s great to get a therapist that pushes your child to keep going!
Sarah, j.sorrels09@blueriver.net, angel Brantley, age 2, Del+

I want to share something that our physical therapist told us that might be helpful to other Angelman families.  During a session one day, I remarked that my son Jack was babbling more during PT than he does during his speech therapy sessions and she told us that movement encourages speech! Who knew!  So if it possible to incorporate some sort of movement during speech therapy (rather than just sitting in a chair) that might encourage more babbling. I definitely find this to be true for our son Jack!
Sayoko, sayoko.murase@gmail.com, angel Jack, age 2, Del+

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See T- Toileting



General Resources (Supplies, Durable Medical Goods, Products, Daily Living Products and Services).

Contact Lizzie Sordia, who is a member of the ASF Family Resource Team.

Lizzie is mom to two young boys, Braden and Nathan (Del +). She joins the ASF Resource Team specializing in General Resources (supplies, durable medical goods, products, helpful daily living products and services). From finding the most appropriate beds for your child to giving you helpful tips to get you through a day as an AS family, Lizzie is the gal to contact. Lizzie is also creator of the online magazine Angelman Today and is passionate about raising awareness about AS and about the health of her children. Lizzie is the also the co-coordinator of the ASF Walk in Florida!

Angelman Family Contributions

Secura is a product by Smith & Nephew. It is a “total body foam cleanser” and is excellent at getting rid of odors, such as urine and feces.
Mindye, angel Daniel, Del +

This is a good “recipe” for stain removal.
1 tsp. Dawn
3-4 T. hydrogen peroxide
2 T. baking soda
Scrub on with a scrubbing brush.

Simply Thick is a food and beverage “thickener gel product” for individuals who have swallowing difficulties. Daniel eats everything now since I started using the product.
Mindye, angel Daniel, Del +

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