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12 Things That Special Needs Mom Needs from You

(This post may contain affiliate links. For more information, see my disclosure policy.)

I am that special needs mom. It’s not something I aspired to or wished for, but it is what I am all the same. I was the friend that gave. I dropped off the casseroles, offered to babysit, organized the fundraisers, gave a shoulder or listening ear, hosted the get-togethers. Now, I’m the friend that needs.

I was more comfortable helping that I am accepting help. It hurts to feel vulnerable. It’s lonely being the mom who is always just a bit on the outside of the discussions that other moms have. And yet, I am here. I am that special needs mom.

12 Things a Special Needs Mom Needs from youI now need the village. I don’t know what I would do without my support network, those who have stood by me during the hardest years of my life. They have listened even when they haven’t understood. They have cried with me, prayed for me, and made sure that I still have the chance to laugh. Some of them are special needs moms themselves, part of this sorority whose initiation we didn’t mean to take. Some of them are women who’ve never walked this road themselves but still chose to willingly come alongside and help carry some of the weight with me.

What That Special Needs Mom Needs From You:

Just be there.  When things get hard, people leave. She is lonely. She has already had people slowly back out of her life now that she is walking this road. Don’t be one of them.

Encourage without advice or judgment. Tell her that she’s doing a good job. Remind her that her instincts as a mom can be trusted. Support her decisions even if you don’t understand them.

Don’t ask, “have you tried xyz?” The message that can send is that there is more this mom could be doing. Believe me, she is exhausted enough already. She has tried so much already, only to be disappointed. The last thing she needs is another serving of guilt. She’s got enough of that to go around as it is.

Include her. When my special needs kids were younger and still super cute, I still got invited to the playdates and my kids got invited to the birthday parties. But as the kids got older and the differences became more apparent, the invitations grew less and less frequent. Sometimes I’d even hear about a group of my friends (ones that I had introduced to each other) getting together without me. I still remember crying when I heard about a birthday party taking place for my friend’s little girl and my daughter, who considered that girl her best friend, hadn’t been invited.

Include that special needs mom. It might make your gathering less predictable or more stressful to have her kids there, but it’s only a few hours of stress for you. For her, it’s a few hours of feeling like she and her kids are accepted. It’s everything to her and it’s worth some measure of your discomfort.

Include her in your conversations too. It is common that when a friend becomes a special needs mom, you stop telling her your stories or stop complaining to her about things your kids do or hard things in your life because you assume that your small trials are so trivial compared to her big ones. Or maybe you think it will make her feel jealous or angry.

While I can’t speak for all special needs moms, speaking for myself, I want to be included. I haven’t forgotten what it was like to have toddlers. I haven’t forgotten how hard just regular parenting can be. Yes, I have a lot on my plate but I still want to share my friends’ burdens, to be given the chance to be there for them. Don’t protect me. Don’t think that because my problems are big, I can’t understand yours. Burden me.

Extend grace. This is a bit of a tricky one because I just finished saying that you should still treat your special needs mom friends normally and now I’m saying that you need to make exceptions for them. You do. You need to both include them and extend them grace.

They will be late. They may cancel on you often. They can’t be as dependable as they want to be.

Their life is often determined day by day or minute by minute and a medical emergency or being up all night the night before or an epic meltdown ten minutes before they were trying to get out the door mean that they can’t control things like being on time.

I used to be the one bringing the snacks shaped like ladybugs with the perfectly packed diaper bag and the kids in the coordinating outfits with their hair done beautifully (true story). Now, I’m the one arriving with a bag of tortilla chips I picked up at the convenience store on the way, asking if I can borrow a comb to fix up one of the kids’ hair, twenty minutes late, and even my own clothes don’t coordinate. 

Don’t give pat answers. Don’t say, “Everything happens for a reason.” or “God doesn’t give you more than you can handle”. I was so relieved when I discovered that it is a myth that God doesn’t give us more than we can handle because before that, I’d been feeling a bit angry about what God felt I was capable of. When we found out that our daughter had progressive hearing loss on top of all of her other special needs, hearing pat answers made me want to scream.

Pray for her. As I type this, our family is walking a particularly hard road with one of our special needs kiddos, harder than I ever imagined possible. There is a group of women who have offered to sign up for days to pray for us. Sometimes on their day, they send me a scripture verse or song to encourage me and remind me that they are lifting us up in prayer. It makes me feel like we are not alone.

I had a friend last week who stopped by with a Slurpee and a hug and then stood in my driveway and cried with me before wrapping her arms around me and praying out loud right there on the gravel.

Champion her. This is similar to encourage without advice or judgement, but this is specific to those times when she is low or when others are judging her or gossiping about her. When she is low either due to her circumstances or just the weight of everything, she needs you to build her up. Help her to be stronger. Remind her how strong she is.

I recently had a friend tell me that she thought of what I do as being similar to an athlete in the Olympics, that it took the same type of strength and determination as elite athletes. To have someone tell me they admired those qualities in me and to have someone see what I do and acknowledge it gave me what I needed to push through an extra hard week.

You don’t know when your words could be the difference for someone. When you see that she is down, send her a card or a text or pick up the phone. She needs you to build her up so that she has more to give to her child. And if you ever hear anyone judging that special needs mom behind her back, kindly remind the one speaking that she has not walked in that mom’s shoes and that you think that mom is amazing.

12 Ways to Support a Special Needs MomGet to know her child. Take the time to get to know her kids as individuals and celebrate their small successes. Talk more about their personalities than their limitations.

Help. Don’t ask, “what can I do?”. See a need and meet it. Say “I love doing laundry. Would Wednesday or Thursday be better for me to come over and do some laundry for you?”

It is hard to accept help. It’s hard for that special needs mom to admit that she needs help. Sometimes when someone asks me how they can help, I’m too overwhelmed to even know what to ask for. That’s why if someone tells me something specific they would like to do, I am better able to accept it.

Create fun. Bring over a comedy. Tell her funny stories. Text her jokes. Like as a special needs mom has too much seriousness. I miss laughing until my sides hurt.

It’s during those rare moments when I’m having fun that I feel like a normal human again. I love it when a friend plans an outing or brings over a board game to play in the evening after the kids go to bed. It’s in those moments when I can forget about all the heaviness for just a short time. It feels so good to be able to stop thinking about the hard things for even a short time.

Support her marriage. Divorce rates are higher among families of special needs children. It’s a statistic that likely scares that mom. Offer to have her kids over during supper while she and her husband go out to eat. Encourage their relationship. Have them over as a couple.

It’s ok to not say anything. Don’t bring up the worst case scenario or tell the story of your cousin’s friend’s neighbour whose child had the same type of special need and something terrible happened.

If you feel the need to say something, “I don’t know what to say” or “I’m sorry” or “I’m here” will suffice.

Parenting with Special Needs Series imageI am pleased to have joined a fabulous group of bloggers to bring you this series on Parenting Special Needs Children. Be sure to read their stories this month on support.

Supporting Yourself and Your Child with Special Needs | Natural Beach Living

Am I Going Crazy? | Every Star is Different

Tips For Supporting A Child With Trauma History | STEAM Powered Family

Special needs parents: we all need support (even you) | My Home Truths

12 Things That Special Needs Mom Needs from You | The Chaos and The Clutter

Simple Ways You Can Support Special Needs Parents | B-Inspired Mama

Classroom Supports & Accommodations for Kids with Hyperlexia | And Next Comes L

A Letter to Parents with a Child on the Spectrum | Carrots Are Orange

Supporting a Family with High Medical Needs  | Grace and Green Pastures

What I’m Reading – July, 2016

(This post may contain affiliate links. For more information, see my disclosure policy.)

I just love that I’m getting back to reading again. It’s like an old friend had moved away and is back in town. Part of what got me back into the habit of reading is joining a book club a few months ago.

This month was much busier than usual because I’m working on a new website for a product that I’ve been creating behind the scenes for many months but I was able to make some time for reading because of a camping trip that we went on.

We went camping to Nakusp, BC with my husband’s family, most of his brothers and sisters, their kids, their kids’ spouses, and their kids’ kids. Including us, there were 57 people there! It was pretty incredible. Below is a picture of most of us, taken by my niece Amy of Amy Amirault Photography.

Kostelyk campout 2016I’m not usually a camper. In fact, I don’t even like the outdoors, but I really enjoyed this time with family and I liked the slower pace. I spent some time reading on the beach and just visiting. There was also lots of time spent around the campfire or going for walks. It was such a nice change from the usual chaotic pace of our life.

My July Reads:

The Weekenders by Mary Kay Andrews

This was our book club selection for the month and to be honest, it wasn’t my favourite. I found it to be super predictable. I think that other people would probably enjoy this book but I have a harder time with light reading and this probably fits in that category.

Launch by Jeff Walker

As I mentioned earlier, I am about to launch a product that I’ve been working on for many months so on our long drive to camping, I listened to the audiobook of Launch. I found that the first 5 chapters were well, (how shall I put this?), quite self-serving for the author, but there was pure gold from chapter 6 on.

For anyone planning to launch a book, product or business, I would highly recommend this. I found that listening to it as opposed to reading it allowed me to take notes (Mark was driving obviously as it wouldn’t be safe to take notes and drive!).

Gray Mountain by John Grisham

I like John Grisham books. They aren’t my very favourite ever but I know that I’ll enjoy the read. It was sitting on my very tall pile of books to read. Knowing that I won’t have much time now that we are back from the lazy days of camping, I thought it would be a perfect choice. I’ve only just started it so I can’t say much for it yet but I’m sure it will be a quick read and it sounds interesting.

When I wrote last month’s reading recap, I was still waiting for my book club selection to arrive. It was Just Mercy: A Story of Justice and Redemption by Bryan Stevenson and it was one of the best books I’ve read in a long time. I had read a bit about the author and the book ahead of time and knew I was going to like it. I LOVED it. It was the kind of book that challenges you to think about what you believe about certain things and why you believe them and to think about a section of our society that you probably don’t give a lot of thought to. It was challenging in the best ways and I’ve been recommending it to others.

You can check out what I read last month by clicking here: June, 2016 Reads.

What are you reading right now?

Ooey-Gooey S’mores Bar Squares

(This post may contain affiliate links. For more information, see my disclosure policy.)

I just got back from a weeklong camping trip. We went to a beautiful campground in the mountains in BC (British Columbia, Canada) with my husband’s extended family. All told, there were 57 of us! You can imagine how much fun we had. They had even ordered matching shirts with a Kostelyk Campout 2016 logo on them and right down to the youngest baby and my sister-in-law’s chihuahua were wearing them!

I’m not much of a camper and can count on one hand the number of times I’ve eaten a s’more in my lifetime. I did get one in on this camping trip and I have to say that it was delicious. Even though I’m not a big camper, I’ve been making and eating these s’mores bar squares for years.

With these S'mores bar squares, you can bring the taste of camping to any day.They pack all the elements of a s’more, the graham taste, the marshmallows, the chocolate, and even the ooey-gooeyness without the need for a campfire.

I know that at this point, you may be thinking that s’mores without a campfire wouldn’t be as fun. You’re absolutely right. However, there are situations in which a campfire just isn’t possible. Even when you’re camping, there are sometimes fire bans that prohibit campfires. It’s also harder to roast marshmallows in the dead of winter.

If you find yourself in such a situation and are craving the taste of a s’more, you have come to the right place.

S’mores Bar Squares Recipe:

8 cups Golden Grahams cereal
6 cups mini marshmallows, setting one aside for later
1 1/2 cups milk chocolate chips
1/4 cup light corn syrup
5 Tbsp. butter
1 tsp. vanilla

Butter a 13×9 inch pan. Put the cereal in a large bowl.

Microwave 5 of the cups of mini marshmallows, the chocolate chips, corn syrup, and butter on high for 2-4 minutes depending on the strength of your microwave. Stop and stir every minute until everything is melted and it stirs easily. Pour in the vanilla and stir.

Pour the mixture over the cereal and fold to coat it completely. Once it is mixed, stir in the last cup of mini marshmallows.

S'mores squares processPress into the greased pan and chill for at least one hour before cutting into bars and serving.

S'mores barsJust like the real thing, these s’mores bars can be a bit messy to eat which just makes the camping experience feel all the more real!

I especially like making these to bring to summer picnics although the last time I made them, they didn’t last long enough to get them out the door! My kids are big fans of anything that has chocolate and marshmallow in it. I may have also tasted one (just to do the quality control of course!) or two myself.

S'Mores Bar Squares squareghost hands FBGhost Hands Campfire Fun

A Day in the Life of a Special Needs Mom

(This post may contain affiliate links. For more information, see my disclosure policy.)

Welcome to a peek into what the day in the life of a special needs mom looks like. Of course, a day in the life of any one mom is going to look very different than a day in the life of another mom and no two days are the same for any mom. In my case, I have five kids with special needs with a fairly wide range of different diagnoses so detailing our routine presents challenges as there are so many variables.

I decided that instead of focusing on one particular special need and explaining how that affects our family’s routine, I would instead present a peek into a typical day in the life of this special needs momma.

A typical day in the life of one special needs mom, well as typical as any day can be.It’s ironic that I’m typing this particular post today because this day is about as far from typical as you can get. I’m typing in the front passenger seat while we drive back from a camping trip with the kids. I’m not a camper, so that’s pretty outside the norm. I won’t talk about what this week has been like but instead focus what our regular days at home are like.

In our home, we have three type of days. We have what I would call at-home days and then we have appointment days and then we have never-a-dull-moment days.

At-home Days.

Before I was the a special needs mom, I was the mom of two neurotypical children so I have a pretty good idea of what the differences are between that life and the one I’m living now. A normal day now consists of me getting up before the kids are awake, working on my blog or whatever book I’m writing at the time and maybe doing a bit of tidying up and throwing a load of laundry in before the kids get up. With a large family, there is always laundry to be done!

Once the kids are up, we have our morning routine which is similar to what probably goes on in most homes but the main difference would be that particularly with our one daughter, I have to be involved and help her through her routine even though she’s ten years old, as even the basics such as personal hygiene and toiling are challenges for her due to her delays.

It’s about this time of the day that the battle of the hearing aids begins. Dancing Queen has progressive hearing loss but she is quite resistant to wearing her hearing aids. As a result, her speech continues to get worse and she becomes harder to understand so I’m quite rigid on insisting that she wear them. This battle continues off and on until bedtime and usually includes a family wide game of searching-for-the-missing-hearing-aids because she takes them off throughout the day and forgets where she puts them.

The kids have breakfast and I read them a story and we talk for a bit and pray together for people we know using our prayer wall. During the school year, one of our sons heads off to school on the bus while the rest of the kids start homeschooling.

In the midst of the morning routine and homeschooling, there are usually several behaviour issues that go far beyond what would be considered typical so we parent a bit differently than a typical family might.

Five of our kids have Sensory Processing Disorder so we take sensory breaks throughout the day and even while we are homeschooling. We also have many sensory items that we use throughout the day to make it easier for our kids to cope and even thrive.

After homeschooling, we have lunch and I do some clean-up. The afternoon is usually spent with the kids playing. This looks similar to most other kids other than the level of supervision that is needed considering their ages and the sensory needs.

Our one son comes home from school. There are some behaviour issues and sibling conflict that need to be dealt with. We eat supper. The kids play again and then we start their bedtime routine and tuck them in and I work again on my blog or writing in the evenings other than date night.

Our at-home days don’t look much different than yours might other than having to remember some of the kids’ medication schedules, increasing supervision and assistance, meeting their sensory needs, the frequency and intensity of the behaviour issues, and the worry.

I find that the worry I have as a mom of kids with special needs is a constant struggle. What that daily routine could have said was “wake up, worry, get frustrated with myself for worrying because it does no good, work, worry, breakfast, worry, homeschool, worry, pray and try to give control to God, behaviour issue, pull control back from God and start worrying again, lunch, clean-up, worry, kids playing, child gets hurt, worry, pray, supper, worry, remind self not to worry, worry some more…”

Appointment days.

I try to schedule all of our appointments in the city for one day a week instead of going to appointments almost every day. Our appointments include:

  • Miss Optimism needs two injections every second week and those are in a neighbouring city downtown.
  • Miss Optimism and Granola Girl to the paediatric pulmonary specialist bi-weekly or monthly.
  • Dancing Queen’s audiology – ear mould fittings every six months and going to pick up the new ear moulds, audiograms every six months, appointments for broken equipment which has been happening a lot lately
  • Dancing Queen to her specialists including ENT, genetic counsellor, paediatrician, psychiatrist, therapist
  • Einstein to therapy
  • Snuggle Puppy to psychiatrist, therapy, orthodontist
  • Regular appointments such as dentist, optometrist and doctor.

I also try to run my errands like going to the pharmacy plus the normal ones that other moms have to do like the bank and the grocery store on those appointment days. The grocery store is more of a challenge. Dancing Queen is too big to go in the cart or a stroller but has a tendency to wander off and has issues surrounding appropriate boundaries with strangers so a trip to the warehouse store can become a crisis or at least cause for panic in a hurry. I try to stick to going to one local store where they know us and know her and I feel much safer there. If she were to try to leave that store with someone who wasn’t me, there are many employees there who would know and try to alert me.

On appointments days (at least one a week), I need to plan for waiting rooms, lunch and snacks for the kids and those are days when I am particularly glad to have freezer meals so that I don’t have to worry about supper when we get home.

With our kids’ special needs, there is also a lot of paperwork. There are papers to apply for funding to help cover some of the costs, papers to fill out for respite, for community aid workers (don’t have that yet because I’m not done the paperwork), for their specialists, for their post-adoption workers, for the testing that needs to be done. There is literally paperwork for some of the other paperwork!

Never-a-dull-moment days.

The thing that I find most difficult about this is that I live everyday with the knowledge that any day could turn into one of these days. It’s like I can never fully exhale, never relax, and always have to be on guard. Even if I’m out on a date with my husband, the phone could ring. Even if the kids and I are having a nice relaxing day where everything is seeming to go well, things could turn at any moment.

There are two reasons that days can turn into a never-a-dull-moment day at our home. One is that two of our children have difficulty understanding cause and effect. This means that one of them may decided to jump off the back of a moving snowmobile not thinking about the possibility that her leg would get wrapped around the tread and break or one might jump from the playhouse roof over the trampoline net and onto the trampoline when her sister is already on the trampoline, thus landing on her sister’s head and causing a concussion. (both of those are our true stories and I could give many more examples) Both of our kids with this as part of their reality are improving.

When they were younger, they would run out into traffic or climb out onto the roof or find matches and light a teddy bear on fire or walk out into a field of cows at two or ride their bike through a glass panel on the deck. They still require more supervision and teaching than other kids their age might, but they are making significant progress. We now have less trips to the emergency room than we used to.

The other reason for never-a-dull-moment days is that two of our children have RAD (Reactive Attachment Disorder) in addition to PTSD, ODD and other diagnoses, so when there is a trauma trigger for one of them (which can come from anywhere at anytime), things turn very quickly. So in our house on the never-a-dull-moment days, the result may be a trip to the hospital or worse. Also with two of our girls having severe asthma, that can also result in a trip to the emergency room. So there’s always the possibility of excitement around here.

As I used to ask my friends…”please pray for boring for me!” With the risk of the never-a-dull-moment type of day always looming, that leads to more worry.

I worry about their futures. I worry about their interaction with friends or lack thereof. I worry about how others will treat them, about how they will adapt to the world, whether we are making the right decisions for them. I worry about worrying too much because I know that I am supposed to be trusting God and that fear is not from Him which brings me back to the worry-pray cycle I was describing before. I also worry about all the things that every parent worries about.

Other than our never-a-dull-moment days and the amount of appointments and paperwork I’m describing, I have the life of most any typical mom except that everything in our life is taken to an extreme both because of the size of our family and because of the special needs of our kids. A lot of the behaviours and difficulties that our kids display are ones that typical kids also display. The difference is the frequency and intensity.

Frequency and intensity pretty much sums up the life of this special needs momma. Oh and worry of course, but I’m working on that one!

Parenting with Special Needs Series imageI am pleased to have joined a fabulous group of bloggers to bring you this series on Parenting Special Needs Children. Be sure to read their stories on daily life.

How to Homeschool your Child with Special Needs | Natural Beach Living

Day to Day Life Parenting a Child with Reactive Attachment Disorder | Every Star is Different

Life with Trauma ~ Living in the shadows‎ | STEAM Powered Family

Reality Bites: Autism and Daily Life | My Home Truths

Why Special Needs Moms are Exhausted All the Time, But Will Never Ask for Help| Life Over C’s

A Day in the Life of a Special Needs Mom| The Chaos and The Clutter

A Day in the Life: A Blogging Mom and Her Special Needs Kids | B-Inspired Mama

Failing My Son and the Routines He Can’t Explain | This Outnumbered Mama

Everyday Accommodations & Strategies for Kids with Hyperlexia | And Next Comes L

The Importance of Visual Schedules for Non-Verbal Autistic Children | Kori at Home

One Simple Trick to Connect with Your Child – Even on the Rough Days| Parenting Chaos

Navigating The Stream: The Trails of Daily Routine | 3 Dinosaurs

Recognizing the Signs of Reactive Attachment DisorderRecognizing the Signs of Reactive Attachment Disorder

Does my Child Have Sensory Processing Disorder? If you are wondering whether or not your child has Sensory Processing Disorder, this list of information and resources will be a starting place for you to find help.Does my Child have Sensory Processing Disorder?