Book Signing: This is Gabriel Making Sense of School


I wanted to be sure that you all were the FIRST to know!

This is Gabriel Making Sense of School
Book signing by local author Hartley Steiner
The Spotted Cow, Mill Creek Town Center
Saturday, April 24, from 2-4pm
KIDS WELCOME!

This is a great local coffee and ice cream venue that is kind enough to host my event. The owner's kids go to school with Nick and Gabe -- nothing better than supporting local business!

You will find more information coming soon at SensoryPlanet.com, including the ability to RSVP and reserve a copy of the book This is Gabriel Making Sense of School to be signed at the event.

Check out Hartley on the morning show on NW Cable News Wednesday morning at 8am talking about SPD and her book (link to be posted after 3/31 interview at 8am PST).

Crossing my fingers that all my local friends and followers will come out and see me!
H

Reduced-Stress Easter

Easter is another holiday that causes anxiety for us. Most holidays do because of the unpredictability and lack of routine that each and every holiday brings.

Last year our Easter didn’t go so well, and by the time we found our baskets, Gabriel was having an anger-meltdown. He was so anxious about finding eggs, yet protecting his new found goodies, that I ended up having to take the Easter Bunny treats away, from all of them until we could all settle down a bit.

Which is just a bummer.

And I’d like to avoid that this year.

Here are my tips for a reduced-stress Easter.

Easter Eggs: You don’t have to dye eggs. Really, you don’t have to. You can color them with permanent markers, sticker them, paint them, put those self-adhesive foam stickers on them, or even glue funny faces on them. I don’t like fake dye to begin with, so this is a good way to get out of it! A open - ended activity like gluing or coloring requires less of me; I don't have to be hyper-vigilant over dye. So, be creative – and reduce stress by not having 12 bowls of neon water sitting on your table for your kids to play in. Makes me calmer already.

Easter Clothing: Most people dress their kids up all fancy for Easter. But you don’t have to. If you choose to go the dressy route, make sure your child is wearing child-friendly clothing. Whatever their sensitivities are, don’t try to push them on Easter! Kids already have high anxiety, add a scratchy outfit (or slick new shoes, or itchy tights, etc) and their ability to cope – be flexible and tolerant of the changes – is further diminished. If you need ideas, check out http://www.softclothing.net/ (I would assume you still have time to order too!).

Easter Brunch: Many people go out for a fancy brunch. But, you don't have to. Now, it is only fair to say that this part is my kids' favorite, because a nice brunch at a nice restaurant usually means all the bacon they can eat. But we stopped going a few years back. Why? Because it flat out wasn’t fun. Not for me anyway. I was the one not eating, wrangling kids, taking walks, arguing over pancake temperature (Nick is still crazy picky), all in dress clothes and heels. Not my idea of a good time. We have opted for an at-home brunch the last few years. This has been great – and I’ve even made extra bacon for Gabe and Matt. One of my favorites kid-friendly-at-home-brunch ideas? Try a ‘pancake bar’. Make pancakes, in oval shapes (you don't need a mold, just eye it, and circles are just fine too) and let your kiddos ‘decorate’ the pancakes like eggs --- syrups, fruit, whipped cream, sprinkles, mini-chocolate chips, whatever – go crazy! And all in your house slippers too.

Easter Baskets: This is the major point of contention at our house: hoarding. All of those little treasures mean that Gabriel needs to defend them – which he will with his life if need be. Try doing it a little differently. The Easter Bunny can bring a stuffed animal (easy to carry) or just leave out items to be shared in a family basket– like bubbles, sidewalk chalk, new makers/paints, playdoh, etc. If you want to do the baskets, I suggest two things: 1. Instead of a basket use a bag that they can keep, and ruin if need be. I found mine at the Disney store this year for $1. Try the Dollar Store, or grocery store for reusable and inexpensive bags. And 2. LIMIT what you put in them. Kids love new stuff – but they don’t need 100 things in their basket! A cool new car, and some stickers is enough to make my kids happy. It is ME that needs to remember not to overdo it. And for me, spending less money and buying less crap is definitely stress-reducing.

Easter Basket Goodies: I highly suggest NOT putting in candy – or at least LIMIT the candy. My rule of thumb is to put something in their baskets for them to eat later (chocolate bunny, very small) and something in that they can eat now (gummy fruits, animal crackers, or Annie’s chocolate bunny crackers). My boys want to eat whatever they find – and most likely it is 7am when they find it, so I care what they get.

Also make sure you are filling their basket with things that your kids will use – I simply cannot stand buying a bunch of crap and then watching it all get broken and tossed within hours. For ideas on what you can put in their baskets that will BENEFIT them in some way (social, emotional, small motor skills, sensory, etc) check out my 101 Stocking Stuffers list here. And the best part of putting things in their basket that they will actually USE? It keeps them busy. Oh, and my favorite item to add? A spring themed kids' DVD -- a built in way to transition to quiet time when they are wound up. Perfect.

Keep It Simple: Often we as adults like lots of pomp and circumstance with our holidays. But, our kiddos, they’d really prefer a dose of good old fashioned calm-predictability. Make sure you plan what you are going to do, even write out a visual schedule for you kiddo, and stick to it. You don’t have to go to 10 different places and hunt eggs at no less than two churches and three houses in order for Easter to be deemed a success. Why not just hold a simple egg hunt at home, and then let the kids make pancakes? Easy for everyone. And less stress too.

_________________

If anyone has other good tips, please leave them in the comments below!

I am following the list above this year, with one exception. We are going to Victoria Canada by boat for the holiday. You might cringe at the idea of exchanging holiday stress for vacation stress, but the boys are pretty good travelers. And being out of town means that everything is scaled down (no family gatherings, no crazy egg hunts) – and I don’t have to cook. Bonus.

Oh, and to make sure the kids survive at the restaurant (first time in about 2-3 years) I got them Kids' Night Out Bing from Knock Knock -- see it and buy it here. I have to say, I LOVED most of their products -- which I got to browse at one of those stores that is full of breakable things that you would never let your kid into...yeah...one of those...alone yesterday while my mom had all three kids. My mom rocks.

See ya later Peeps!
H

Photo: My boys and my niece, a few years back, on one of our dressy-clothes-overscheduled-fancy restaurant Easters. Look how little they are. Awww.

Swimming Towards Summer

Many children love swimming. Mine are no exception.

Gabriel, since he is a true seeker, has loved water since before he could even say ‘water’. He spent hours in the backyard sprinkler, kiddie pool, hot tubs, bath tub, and shower and in every way he could, he attempted to become one with the water.

It came the time, that our schedule would allow (finally therapy appointments have slowed, and flexibility has increased, and Matthew has grown up – a little) for him and Nick to take swimming lessons. Matt too, but he had a cast at the time I signed them up, so we skipped his lessons (but I have signed him up for next session during the week while his brothers are at school, which promises to provide me with a plethora of blogging material).

We signed the boys up at the YMCA, through a regular group class, and off we went.

Today was the last in a six week series.

Yet the first I attended.

Why?

Because no matter how ‘grown up’ Matthew is at this point, he is still a true pain in the ass to take anywhere he has to wait and can’t follow his own agenda.

But Jeff is in China – or Korea – or maybe Japan now. Wherever he is, it isn’t here.

I prep Matthew with a numbered list of what steps come when (visual schedule), and make the plan for him to watch his brothers with ‘expected behavior’ before we return home. I can’t put Matt in the YMCA child care center because he has been kicked out so many times, it isn’t worth it. For either of us. So he comes with me.

He didn’t do too badly. And yet, he didn’t do so hot either.

Aside from throwing Rusty (from the Thomas series) into the pool – which Gabriel grabbed and tossed back – and then pinching my face, followed by slapping me across the face – he was an angel.

Is it bad form to scream at your kid and throw him in the pool at the Y (it was the shallow end, don’t be too scared)? Yeah, I thought so.

Instead of throwing him in the pool for pinching and slapping me, I gave him joint compressions, and squeezed him a bunch, and took the brunt of his ‘zerberts’ against my face (his ridiculous sensory seeking behavior that escalates as he does which makes me on the verge of a sensory meltdown of my own).

In the mean time, between Rusty's near drowning and surviving blows to my face (and ego), I watched the boys swim.

I was surprised to see that Gabriel’s motor planning issues are still as prevalent as they have been in the past.

Yes, they are considerably better than when we started OT nearly 5 years ago. But, still he had trouble.

He loves to swim, and just beams while he is in the water so it wasn’t as if other people would notice the trouble he had, but I did. I am hyper vigilant like that.

Gabriel takes everything so literal – ‘put your face in the water’, the instructor says, for a belly float. But Gabriel literally just puts his face in the water, not past his eyebrows – he doesn’t hold his head even with his body, as the instructor intended. He is my literal thinker for sure! But the teacher doesn’t notice this the same way I do. Which is just fine for YMCA swim lessons.

Nick won’t put his face in the water – tactile defensiveness – he HATES the feeling of water in his eyes, or god forbid, in his ears. That is a battle even in the shower. But he too did well.

Actually, they both love the water, but have no true swimming form.

My favorite part of the experience was being in the women's locker room (never mind the dirty looks over having my three boys in there) and watching a woman walk in with her two daughters.

The youngest girl, probably 4-5, immediately pinched her nose shut and began, "It stinks in here; let's leave!" Her mother acknowledged it and began moving quicker -- meltdown coming? Hmmmm.

Once their things were picked up, she handed the girl a sticky-wiggly-jelly-like substance in the shape of a large tarantula. Hmmmm. Fidget toy?

It is always reassuring to me that us SPD moms are everywhere. EVERYwhere. And I still have to genuinely hold back from yelling, "HEY! Does your kid have SPD! Awesome! So does mine!" Not everyone is as excited about SPD as I am.

The boys aren’t enrolled in swimming for next session because we are doing Flag Football.

Nick’s FAVORITE thing ever, he has done it for the last two seasons, and now Gabriel has decided to play.

I am a little leery about it – team sport, comparison to his peers, etc – but this is definitely something he is ready for in his own mind, and I truly think sometimes (at least as he gets older) he is the definitive decision maker on whether or not he can do something – he won’t let his acronyms define him.

And he has practiced a great deal with Nick, and had the opportunity to observe for two seasons. Both of those will probably help considerably!

They start Football on April 10th. I’ll keep their ‘stats’ here on my blog for all to see.

Spring Football season will take us to summer when Gabriel will be attending summer school – for sure – probably at the private school we are checking out over spring break.

I think he will be going there for summer school, even though we haven’t officially tried it yet, because I got Adoption Support to pay the cost of it ($1800).

Do you know what Adoption Support is?

If not, here is my plug for adopting from Foster Care (or at least one benefit):

When you adopt through foster care, your child can qualify for Adoption Support – which is financial help for the child through his/her lifetime in the way of services related to their special needs.

In Washington part of the criteria for qualifying is that the child has to be a minority, part of a sibling group, or have special needs (or all of the above in Gabriel’s case) to qualify, but when you do qualify (all negotiated by you -- attorneys are not normally used), you get medical coverage, and in some cases, can apply for and receive additional support.

I asked Adoption Support for help with care for Gabriel over the summer (last summer was AWFUL and I don't want to have a suicidal child on my hands again), and after they turned me down, I was able to give them more information and get the care covered. I literally cried when they told me we’d get the support.

Helping to keep Gabriel stabilized through summer is A TRUE GIFT for our entire family, not just Gabriel. But when I told Gabe that he would FOR SURE get to go to summer school (this is NOT camp), he jumped up and down in my office and shouted with delight, "Woo Hoo! Yes!" Complete with a fist pump.

So, as you might guess, I am excited about this school even if just for summer.

Hope you all are finding the sun, and maybe even getting to take a uncoordinated dip in the pool!
H

Soft Clothing Winners!

This is my favorite part of the giveaways -- announcing the winners!

Drum roll please...

For girls, the lucky winner is

Barb!

Congratulations Barb, please visit Soft Clothing (here) and choose your color and size. Once your darling daughter has her adorable, and sensory friendly dress on, snap her photo and share with me and Jessica!

Now, for the boys, the winner is

Our Family's Spot!

Congratulations Our Family Spot, please visit Soft Clothing (here) and choose your color (pants) and size. And please snap a photo of that cutie boy of yours, and share it with me and Jessica if you want!

Thank you to everyone who read the article, and even more so, all of you who entered.

The winners need to contact me via email at hartleys@steinerigroup.com by Sunday with their sizing/color choices to claim their prize.

Now, for me, I am off to try and dress *my* kids for school,
H

My Book's First Review and Giveaway!

As you all know, my book came out just barely a week ago, and I have truly enjoyed some great media attention since its release. I have received invitations to do radio interviews, magazine interviews, and I even have a television segment on my book and SPD coming next week (3/31) on King 5/Northwest Cable News here in Seattle. I could not be more pleased.

Until today.

Today the first of the reviews from fellow moms -- fellow SPD parents -- came out. One would think that this would be the least important review, a simple blog, with only two dozen followers, writing about my book. But it is truly the best.

Because of that, I would like to encourage all of you to not only go read the amazingly written review, but to enter to win a copy (the first copy I am giving away!) at Caitlin's blog, Welcome To Normal (http://www.welcome-to-normal.com/).

I have been impressed with everything that Caitlin has written , and am drawn in by her honesty and descriptive use of language as she writes about her son, his Sensory Processing Disorder, and their newest diagnosis of Aspergers.

Because of this I have also asked Caitlin to do an article for HLW3B in April in honor of Autism Awareness Month. (Side note, April will also have a giveaway and interview from Lynda Farrington Wilson, author of Squirmy Wormy and Dr. Roya Ostovar, author of The Ultimate Guide to Sensory Processing Disorder).

I encourage you to take a break from your busy day today and head over to Caitlin's blog, http://www.welcome-to-normal.com/ and read not just the reivew of my book (which really is good, and I am not just sayin' that because it is my book!), but all of her insightful posts detailing her relatively new journey through SPD and ASD.

Thanks Caitlin! And a big thank you to all of my readers!

Hoping for sunshine on the 3rd day of an entire week of half days (like torture),
H

Photo: Gabriel and I posing for a photo in honor of the book. (c) Sandy Clifton 2010

Darius' Story (& Soft Clothing Dress Clothes Giveaway)

In case you haven’t heard, which would probably mean you are overwhelmed at home and don’t have time to read the news, there is a new company called Soft Clothing which has begun developing and producing sensory-friendly clothing for special kiddos. I interviewed the co-founder Jessica Ralli last year here on HLW3B, and Soft Clothing gave away free t-shirts. Now, they are back to give away even more great clothes – this time one of their dressy looks for a boy and one for a girl. Just in time for Easter!

But I didn’t think I should interview Jessica again – that seemed like it would be overkill, right? So I had to come up with another idea. And sure enough, the inspiration came to me – from Jessica herself.

Jessica and Soft Clothing strongly support many different charities (all of which can be viewed here) and she has a special place in her heart for children with sensory issues at school. After all, she was a special education teacher before she launched Soft.

I was recently telling her about some of the kids in my son Matthew’s Developmental Preschool class that have sensory issues. Ok, I don’t *know* that they have sensory issues, but wearing your Pajamas to school inside out every day sure is a hint, don’t you think?

What impressed me the most is that Jessica jumped on board to donate clothes to these kids – across the country in a public school that will give her no press and no advertising. Why does she do this? In her words, “I worked for two years in a special needs daycare in the basement of a housing project--and the kids had a lot of sensory issues--it's part of where the inspiration for Soft comes from so I am always, and will always be looking for opportunities to help in this way.”

It was then I realized that I didn’t need to know more about the clothes or about Jessica; I am already impressed by those. Now, I need to know more about the kids who are benefiting from them.

I’d like to introduce you to Darius and his mom Kathleen.

Welcome Kathleen to HLW3B – so great to meet another family like mine! Can you take a minute to tell us about your family and the kinds of sensory struggles Darius has?

Hi and thanks so much for getting to know us! We are also a 3 boy family!

Darius is my oldest and has been expressing his sensitivity to clothing since pretty much birth. He was frequently uncomfortable even as an infant and preferred to wrapped in loose blankets or the softest of sleepers. As he grew, he was adamant about picking out his own clothes and removing all labels and trying to find the most seamless socks out there. I knew instinctively his problems were severe and tried my best to accommodate his comfort.

As the years progressed, his ability to tolerate clothing became more and more restrictive until he wound up with what became know as “the uniform”: loose fitting pajama bottoms in thin flannel or slinky material, usually found in the ladies lingerie department and altered to accommodate his tiny waist and height, but left billowy throughout the leg. The top would be the most washed and worn softest cotton t-shirt belonging to my husband, worn inside out. These beauties frequently feature under-arm discoloration, stains and a hole or two for good measure!

Of course, all parents think that their child is the most attractive child in the world and I am no different. So you can imagine how difficult it was for me to get over feeling judged by other parents when I would take this handsome young boy out looking like a homeless bum in the streets.

Darius also has severely sensitive hair, and finds haircuts, shampooing and brushing almost intolerable. It was not easy to avoid the glares from those who thought I didn’t take care of my son, when in truth, I was doing the best I could as a parent to make my son as comfortable as possible. My other 2 sons do not experience any sensitivity issues at all beyond the occasional itchy tag, and the contrast in their appearance was often dramatic.

So many of my readers can relate to morning clothing battles! What was it like trying to get Darius ready in the morning before Soft Clothing? What would he wear?

Oh boy! Well, let’s put it this way-our local public school has uniforms.

I tried desperately to find something that work for him, but nothing did. Kindergarten was non-uniform, so that went ok, but first grade also coincided with his ADHD diagnosis and reading delays.

In all its genius, the school district decided to put my highly verbal, extremely hyper son in the English as a Second Language classroom. It’s kind of a no-brainer that “behavioral problem” would ensue.

Darius lasted all of 22 days there, ending with us engaging in a law suit against our school district and Darius becoming a home schooler. Home schoolers can wear whatever they want, so that’s a pretty good example of the severity of issues he was going through and how we managed to dodge that particular bullet!

Hunting non-stop for the ‘right’ clothes is exhausting! How did finding Soft Clothing change your life – and Darius’?

Can you say revolutionize? I spent countless dollars on clothing before Soft trying to find things he could tolerate. I would often buy whole lots of used clothes on Ebay (already broken-in for you !) just to be able to utilize one pair of slip-on pants or a well-worn t-shirt.

At holiday time when I would take the kids for pictures with Santa or the Easter Bunny, we would have to do a reconnaissance mission to see which malls had the Santa set up as close as possible to a bathroom, so we could slip in and change into an uncomfortable outfit and take the picture, rush immediately back to the bathroom to get back into the “uniform” and pick up the picture.

This is no longer an issue since I am proud to have my son photographed in Soft Clothes! I only have to worry about which mall has the Easter bunny and Sephora this year. : )

What do you want other families with sensory-sensitive kids to know about Soft Clothing?

Run, do not walk to softclothing.net and place your order! Everyone is feeling the pinch of this economy, but you cannot put a price on your child’s comfort. It changes the whole experience of their day. I liken it to a woman wearing high, pointy heels. By the end of the day in those shoes, Johnny Depp could be professing his undying to love to you, but all you will be thinking about are how badly your feet hurt and when can you take the dang shoes off!! That is how these kids spend their days, thinking about the discomfort. Try to build a new wardrobe slowly, one item at a time and see what a difference it make. I hope you will give Soft a chance! Thank you so much for reading our story!

Thank you for taking the time to tell us about your family and how Soft Clothing has made a big difference for Darius!

________________


Before I get to the free part -- isn't Darius adorable!? I love the 'before' and 'after' shots -- especially the yellow crocs!

OK, Jessica has generously agreed to give a free outfit to both a girl and a boy. Please be sure to tell me in your comment which outfit you'd want (a soft dress for the girl, and a pair of pants with a tie t-shirt for a boy).

Here is how you can win:

1. You will need to follow this blog (publicly through Google located on the top of the right navigation) and

2. Answer the following question as a comment to this post (click on the word comment below my signature):

"How will having Soft dress clothes make special occassions better/different for your family?"

Once you have joined and answered, you are officially entered. As Nick would say, "Easy Peasy Lemon Squeezy." The contest will run from Thursday 03/18/10 to Thursday 03/25/10 and will end at 7pm PST.

Jessica will pick her favorite answer for both a boy and a girl. I will post the winners here no later than Friday 03/26/10. You will have until Sunday 03/28/10 to respond with your address (email me directly at hartleys@steinerigroup.com) or we will choose an alternate winner.

That's it--thanks again to Kathleen and Jessica!
H

Official Book Release

I am so pleased to announce the release of my book, This is Gabriel Making Sense of School.

You can view and purchase it here:

http://www.amazon.com/This-Gabriel-Making-Sense-School/dp/1426927770/ref=sr_1_1?ie=UTF8&s=books&qid=1268676748&sr=8-1

You can join the facebook group here:

http://www.facebook.com/group.php?gid=204826618923

And even better, for all of you out there who want ideas for sensory accommodations for your kiddo, I have designed a downloadable Sensory Accommodations Suggestions Page that you can download here:

http://www.hartleysboys.com/p/sensory-accommodation-suggestions_23.html

I am so excited to see this nearly 2-year long project become a reality. I believe that SPD will get into the DSM and that this book will be key in helping educate not just teachers, but the children our kids share their classrooms with.

Here is to all of you for reading our journey and your encouraging words through the process of publishing this book. A heartfelt thank you to everyone.

Now, please, spread the word!

This is Gabriel Making Sense of School is officially available!

H


Playdoh Pharmacist

"Look mom," Nick says, carrying a bowl full of punched out playdoh circles over to show me, "I am separating the small pills from the large pills."

"Pills?" I ask, "What kind of pills are you making?"

"The kind of pills that help kids who have problems with their brains. Like Gabriel."

"Awesome, Nick. We need more doctors making pills like that."

"FOR REAL." Gabe adds.

I love those boys.
H

The Land of Happy

After Gabriel lost it over homework last night, throwing his paper and breaking the dry erase markers, I was already angry that my husband was in Dallas for the night. Out to dinner with colleagues, having steak at a high end restaurant.

Then Nick was angry with me, because I was frustrated with Gabe. And he screamed at me. A LOUD I want your attention scream. Which is very unlike him.

I took a deep breath, and we started bedtime early.

But Matt wasn't having it. He was running around, literally, which is not like him either. He was bright red from all the running and was insisting that he get to play 'jokes' with Nick. Which, in case you are wondering, means he wants to trick Nick, hide from Nick, squirt toothpaste on him (which he did, and all over the carpet in my room), or put ice cubes down his back. Brothers.

I am chasing Matt like a crazy woman, holding him down, forcing him under the heavy blanket and trying to figure out what "I need the grey thing" means. Turns out it is a train track that his father glued back together for him. *sigh*

Finally when all three boys are sitting in bed ready to read, and things begin to calm down, and my animosity for my husband in the hotel lobby having a drink starts to subside, we read this poem by Shel Silverstein:

THE LAND OF HAPPY

Have you been to The Land of Happy,
Where everyone's happy all day.
Where they joke and they sing
Of the happiest things,
And everything jolly and gay?
There's no one unhappy in Happy,
I have been to The Land of Happy---
What a bore!

And I laughed out loud. That Shel Silverstein is a genius.

Because really, my happy is in the not-so-happy that I have every day.

And the one thing I am sure you could not call my life, is a BORE!

Hope your weekend is not-Happy,
H

Photo: Shel Silverstein's famous "Where the Sidewalk Ends" illustration.

FTF "Vows of Special Needs Parents" by Chynna Laird

This is our second First Things First article focusing on special needs parents taking care of themselves. The theme today is on keeping a strong marriage -- putting your relationship first.
This is such an important topic for those with special needs kids, that we are doing two articles this year on the subject. This one, from a woman's perspective, and then in June we will be featuring Gavin Bollard (life-with-aspergers.blogspot.com) on the same subject from a man's perspective.

As always, please feel free to comment.
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When a family has a child with tremendous needs, what we do for her can sometimes overshadow everything else, including our relationship with our significant other. Paying attention to being a couple is important not only for the emotional support and companionship but also because a strong family has a strong couple unit at its head. And that’s important for everyone.

In May of this year, my partner, Steve, and I will have been together for 11 years. We used to enjoy going out to movies, dinner, the opera (Oh YES! Steve loves me that much!) and to the occasional football game (Oh YES! I love him that much!). We enjoyed our ‘Date Nights’, our intimate times alone and that we could always take the time to sit and talk when we needed to. Then we had Jaimie and many of those things ended shortly after she was born.

Jaimie was an extremely difficult baby. It took the two of us to do the simplest tasks for her because she fought everything so hard. To change a diaper, one of us had to hold her down while the other frantically cleaned her up. To give her a bath, one of us had to hold her in the tub (or baby tub or kitchen sink depending on which location gave her the least amount of stress) while the other washed her at lightening speed. To feed her, to clothe her, to comfort her, to get her to go to sleep, to try playing with her…you get the idea. Then after a few months, Jaimie refused to even let Steve do anything for her. It was very lonely for both Steve and for me.

Imagine for a moment how heart wrenching it would be to have your child reject you when all you’ve done is loved her! That was Steve’s side of things. For me, my entire day and night was spent caring for our child because there was something about Steve that triggered all of the sensory sensitivities that Jaimie hated. She couldn’t stand his touch, his voice, his smell…nothing. And that had a huge impact on our relationship.

Steve didn’t feel like he was part of our family anymore and, even worse, we didn’t feel like a couple anymore. We got into that mode where he got up, went to work, I cared for Jaimie all day, he came home and Jaimie screamed until we finally got her to sleep (for awhile) then we were both too exhausted to chat. We were both hurting so much but weren’t able to let it out.

Then I decided we had to.

This happens to many parents of special needs children. We become so focused on meeting our child’s needs that we forget about our own—separately and together. And that’s why, sadly, a lot of couples break up when they have a child with high needs. But my view, in any situation, has always been that it takes a lot more strength and courage to stick together and work it out together than just to give up. We needed each other and, most importantly, Jaimie needed us. So, one night, we took the time to sit and talk about our relationship and what we could do to make things better. We each promised to do the following things:

(1) Remember that our child’s needs are greater than what one of us can provide for her on our own. Invest in your relationship because together you can bring more resources to bear for the care of your child.

(2) Remember to invest in ourselves. We have to see ourselves, both individually and as a couple, as a limited resource and that without investing in oneself and one's relationship, that resource will fail.

(3) Remember to take time for intimacy. Even if all we have is 10 minutes each day alone, we need to take that time to cuddle together, chat about other things going on besides our exceptional child and remind ourselves of why we became a couple in the first place.

(4) Remember to talk. Communication is vital in any relationship because when you stop talking, you don’t know what’s truly going on. Never stop talking.

(5) Remember that it’s okay to be away from our child for a little while to take a ‘mental break’. Parents of special needs children, especially mothers, often feel tremendous guilt being away from our child. I still feel that Mama Guilt when I take a bit of time for myself. It isn’t because I don’t think Steve can’t care for the kids; it’s more because they need me so much, especially Jaimie. And one tiny thing that isn’t constant…that he may forget…and it can set Jaimie off for the day. Jaimie needs to see that I go out and come back. And I need to go out to regroup. Such time is important to everyone. The last thing we want to happen is for resentment to fester and grow.

(6) Remember to meet our needs first. We can’t possibly care for our high needs child when we aren’t in tip-top shape. It may sound selfish, but by self-investing you’ll be able to sustain yourself more continually to meet your child's needs. Be as kind with each other as much as possible, recognize each other's limitations and fill in each other's gaps wherever possible. Take the steps to be healthy in every facet—emotionally, physically, psychologically, mentally and spiritually—to be ready to handle the bumps that come along.

(7) Remember to reach out. Oftentimes, parents of special needs children forget to grab onto the help when it’s offered or even recognize that we need it. Address the challenges, deal with guilt and fear and seek the support of services, friends and/or family to share the tasks of care.

The above list is what Steve and I call our ‘vows’ of being special needs parents. And we always check into it when we feel a little out of sync in our relationship. Eleven years together is a long time. Sure we get on each other’s nerves once in awhile but I’ve gotten a huge reward for our hard work: a best friend, a lover, a confidant, a bodyguard, a back-up, a partner in life and the best damned father in the world. For me, next to my children, there is nothing that means more to me than Steve and no better investment.

By Chynna Laird, author of I'm Not Weird I Have SPD and Not Just Spirited; A Mom's Sensational Journey With SPD. Check out her blog too!