Eight Coping Strategies For (Special Needs) Moms

I have always wanted to be a mother. I had a childhood fantasy of having twin girls named Stacey and Tracey (adorable, right?).  I was more than eager to start a family after getting married.  At that time in my life I was working as a speech therapist and not enjoying it.  It seemed like the perfect time to take a break from one job and begin my lifelong dream- starting a family.

I was sure that the void I was feeling in my life and career would be filled the second I became a mother and I would finally have the sense of purpose I was longing for.  And in many ways, this did happen.  Man came into this world, tiny and perfect, and filled my heart with so much love—a kind of love that I didn’t know existed. However, from early on, he was a challenge.  I can recall him military-crawling across the room at four and a half months old and thinking he was a physical phenomenon.  I realized shortly after—when I found he had slid himself to the top of the staircase and was about to take a ride down the stairs headfirst, that a phenomenon he was not.  What he was, was a danger to himself.

People often ask when I knew my child had ADHD and SPD.  I didn’t know immediately what he had, but I knew from birth that he was different, and challenging in a way that many kids were not.  At two, when other parents were reducing their babyproofing efforts, we were upping the ante in our house.  By four, when his peers had begun to listen to directives from their parents—directives that would keep them out of bodily harm—Man was still deaf to my warnings, running wildly through parking lots, thrilled and care free, as I yelled at him to stop.  He was my sweet, loving, first born little boy, and he made my heart sing—but he was (and still is) HARD.

I wrestled with my feelings about this for years.  Parenting was supposed to make me happy and complete me in a way that nothing else did, right?  Imagine my sadness and fear when I had to face the fact that motherhood was taking a larger toll on me than I had expected.  All parenting is challenging, but being the parent of a child with special needs, whether mental, physical, or medical, comes with its own unique set of challenges. It took me a long time to accept that.  I found it nearly impossible to face the fact that being a mom, something I had wanted forever, was not exactly what I thought it would be.  Having such feelings was confusing and depressing.  It was tough to distinguish the feelings regarding my role as a special needs parent, from my feelings about my sweet Man.  I loved my Man, but I did not always love the challenges he threw my way- and that fact in no way made me a bad mother.

It took time to come to the realization that our challenges required a different set of answers than those of my mom friends with neuro-typical children.  Over the last year, I have completely overhauled my life and the way I view my parenting.  Here are some things that I have done to stay sane and productive as a special needs mom:

 

I stopped comparing my child to those of my peers. This was huge for me.  Every child is different and unique.  The strengths of one are not going to be the strengths of another.  This fact is what makes the world go around.  If we were all the same, there would be no innovation, no advancements.  Every person serves a purpose, and my child’s purpose is different than yours.  He might never play soccer, or be class president, but mark my words, he is brilliant and unique in his own right.  He may cure cancer one day.

I sought out other special needs moms. I need other moms of children with special needs in my life.  They are my rocks and my support.  They understand my day to day successes and failures in a way that other moms just can’t.  I simultaneously stopped trying to get parents of neuro-typical children to understand my plight.  It was taking an emotional toll on me to continuously try to get other parents to understand that their day-to-day lives were just different than mine.  I’m not diminishing that their days are difficult, but it truly is just different.

I got a babysitter and sought more help from family! For far too long, I thought that I could and SHOULD do it all myself.  I was afraid to put the responsibility of Man on anyone else.  Frankly, following a few bad experiences of babysitters dismissing my warnings about his behavior as me being a “hover mother” and then learning the hard way that I was not, I was also too worried leave him with anyone.  But as he got older, I let go of this fear and accepted the fact that I desperately needed a break and that didn’t make me selfish.  I found someone that I trust and now she spends oodles of quality time with the kids while I spend a little time on me.

Which brings me to the next one, I spend time to myself! I gave myself permission to focus on me.  Being a parent doesn’t mean that I must be my children’s sole caregiver.  I now have returned to school to pursue my passion.

I exercise.  Endorphins are amazing things, my friends!  It gives me a mental and physical health that allows me to face the day to day challenges in my life.  If you feel good about yourself, it makes everything else in your life that much easier.

I accepted that my best was good enough. As a parent of a special needs child, we want to fix our kids, to make that square peg fit into a round mold.  This is just impossible.  All we can do is our best to support them in the way that they need it, and the rest is up to our kids, and that must be ok.

I stopped hiding my feelings and I forgave myself. When I finally admitted that I was unhappy with the life situation I found myself in, I could begin making changes.  You can’t control your feelings, but you can control how you express them.  I was angry for a long time, and now I have the chance to let go of that anger and replace it with more positive energy.  But that was only possible after I could let those feelings out.

Being a special needs mom isn’t easy, in fact, it’s downright hard most days!  However, your personal happiness does not have to be tied to your child’s challenges!

Dear IEP Mom,

Dear IEP Mom,

It’s that season again.

IEP season, that is.  It’s the time of year when sleepless nights and anxiety-filled days all lead up to one single meeting that will determine the course of the next full year of your child’s school career.  That time when you sit alone at a table of teachers, therapists, and psychologists who all think they know your child’s needs better than you do, while you fight to prove otherwise.  A time when you struggle to maintain your composure while simultaneously jumping through hoops to make sure your child’s educational requirements will be adequately met.

I want you to know that you are not alone. That I am there, sitting right next to you.  I feel your frustration when it seems that no one at that table can hear you.  I too wonder why I can see them listening, but how they are not really hearing me.  I am also fighting back the tears as they list my child’s challenges but seem to want to provide little in the way of support—this phenomenon perplexes me as well.  I am your inner voice telling you to remain calm, reminding you that being strong and assertive does not mean having to yell.  My palms are sweating too, and my heart is also pounding—the constant drumbeat of, “Am I doing and saying enough?” is racing through my mind too.

I am here to tell you that you are doing enough.  You need to know that you are a superstar, a fighter in a way many parents can’t understand.  I want you to shrug off the belittling comments that you may hear from others—turn a deaf ear when someone says, “What’s the big deal, it’s just a meeting?”

It is a big deal; it’s not just a meeting, and unless you are going through it, you absolutely cannot understand the depth of its importance.  I too feel misunderstood sometimes, that many mommy friends just don’t understand my struggle.  I also feel alone and exhausted from trying to explain it.

Do you know how strong you are?  That you are your child’s single most important advocate, teacher, therapist, and psychologist?  That you wear many different hats every day just to make sure your child gets from the morning to the night successfully.  I know that, whether the teachers across the table from you see it or not.  You have the strength of 10,000 women!  You alone sit at this meeting to make sure that your child receives the educational support he or she needs—the support that he is legally entitled to which will allow him to successfully navigate the least restrictive educational environment.  I jump for joy right along with you when he thrives and hold him in comfort, crumbling silently inside, when he fails.  That’s right, IEP Mom, you are a rock, a warrior, and a hero!

I am right there fighting alongside of you.  We all are!  So, IEP Mom, go into that meeting with your head held high, your paperwork prepared, and your arguments rehearsed, as this is just another battle in the war that is your child’s education.  However, this time, know that every mom in a similar room, in a similar school, just a town, state, or country away is right there fighting along side of you day in and day out.

~ManVsMommy

IEP meeting

Picky Eating and Sensory Eating Are NOT The Same! A Guide to Improving Feeding in Sensory Eaters

Today, Man took a bite of a carrot, chewed it, and swallowed!!!  I tried to remain calm on the outside; I didn’t want him to notice the amount of excitement, relief, hope, and importance I placed on that one single bite.  I didn’t want him to shrink under the pressure that I placed on his ability to take a bite of a carrot.

“Nice job, buddy!!  I’m really proud of you!  Did you like it?”

“Meh, it was ok…”

That was enough for me!  On the outside I maintained my calm demeanor, my “this was no big deal” face; but on the inside, I was celebrating like it was New Year’s!

Now, at this point you’re all probably thinking, “Wow, a bite of a carrot! She’s really got to check her brag-o-meter, because that sounds about as insignificant as watching television…”  But for us, this was HUGE.

I’ve ready many, many articles and blog posts about picky eaters.  They put forth an expanse of knowledge and make loads of professional suggestions. They also all miss one thing: there is an enormous difference between a “picky eater” and a “sensory eater.”  The valid suggestions these articles provide are for picky eaters, but a sensory eater is a different ball game altogether, and this is rarely if ever mentioned. I suspect that this leaves parents who have tried all the suggestions mentioned in the articles saddened, frustrated, and feeling like failures.

I recently wrote an article called, “Imagine Your Child With Sensory Processing Disorder.”  Imagine Your Child With Sensory Processing Disorder It highlighted many of the major aspects of dealing with SPD.  Sensory eating is one of these challenges.  What is sensory eating and why is it different from picky eating?  Picky eaters don’t like a variety of foods, much like the sensory eater, however, when they eat new foods it doesn’t cause a sensory overload.

What do I mean by an eating sensory overload?

It comes in a few different forms.  There is a sensitivity to textures, where children can only handle one texture, often smooth pureed foods.  They can eat yogurt, however hand them a bag of chips or a slice of turkey and they immediately begin to gag.  This is the most common sensory eating issue.  Less common, but equally challenging, are sensitivities to flavor and smell.  Man, has a sensitivity to flavor, I have seen him break out into a cold sweat, red faced, and teary eyed because a Starburst was “too sugary”.

What does this mean when eating?

It means that children would literally rather starve than put food in their mouths that might cause physical and/or mental pain.  One of the number one suggestions in every article on combating picky eating… “They get what they get or they don’t eat.  Eventually, they will be hungry enough to eat.”  The other variation of that suggestion, “They MUST try at least one bite of the new food that you give them.”  This is a suggestion that will NEVER. EVER. work for a child with sensory eating issues.  They see food as pain, and it doesn’t matter how hungry they are, they would rather starve than be in pain.  Wouldn’t you?  If you knew that every time you put certain foods in your mouth, it would make your feel as though your mouth was on fire, would you want to eat it?

 

Unfortunately, as time goes on, inevitable behaviors begin to develop.  It’s Pavlovian in nature, and they begin to fear foods and meal times.  Even if it’s a food that might not “hurt” them, they will begin to refuse to eat it.  They often don’t like to eat out at restaurants and they do not enjoy the social aspects of a meal, choosing to eat alone or engage in reading or watching an iPad to be able to get through a meal, rather than engaging in lively chit chat with friends and family.  Parents must provide constant reminders and prompts to get a child to complete each meal, every day.  This often lends an additional level of stress to food, eating, and mealtime.  Many children are uncommonly thin and vitamin deficient as well.  This provides another layer of fear that parents must try to avoid inflicting on their child.

Suddenly, it’s not just the body’s physiological reaction to the food, but also the behavioral and emotional stress that comes along with it.  Now, considering these factors, it becomes more obvious why there must be a differentiation between picky eating and sensory eating.  For years, I would read these articles and think to myself, “none of these strategies will work for my Man, he would just rather not eat.”  I would see other parent’s comments laced with sadness and frustration that their children had too, chosen not to eat.  It’s not as simple as being a picky eater; it’s not as simple as choosing to just suck it up and try a food that they might not end up liking.  For them, it’s knowing that a food might make them throw up or set their little tongue on fire; it’s about being made physically uncomfortable from food.

 

 

Here are some suggestions that come from both the parent in me and the Speech Pathologist:

1)      Most importantly, do not pressure your child!  There is already enough fear associated with eating that you don’t want to increase those fears.  As scary as it is to hear a diagnosis of “failure to thrive”, placing added pressures on them to eat will not help.

 

2)      Address their fears, discuss them openly, and validate, validate, validate!!  Let them know that you understand how hard it is for them to eat certain things and that’s ok!

 

3)      Make food fun!  Desensitizing them to foods is very important, so cook and bake with them often.  Also, do art or craft projects that involve playing with food.  Make chocolate pudding and crush up Oreo cookies to make “dirt”, then place gummy worms in the dirt, etc.  Let them get used to the textures on their hands first.

 

4)      When you feel they are ready, introduce new foods in small increments.  As your child gets older, his or her sensory system will naturally mature, however, the fear and maladaptive behaviors that they have developed over the years might remain.  To combat these fears, you must go slowly!  I recently implemented a chart system for Man and so far, it seems to be helping:

 

Monday: smell the food

Tuesday: kiss the food (or touch to lips)

Wednesday: lick the food

Thursday: hold a bite of food in their mouth

Friday: chew a bite and swallow

Saturday: REWARD, REWARD, REWARD!!!!!!!  For Man, it’s two ice cream sandwiches with lunch!

feeding train real

Feeding Chart (please pardon my lack of artistic and creative abilities).

After your child has successfully chewed and swallowed that initial bite, every day following they should take one bite of the new food for about a week, then the next week two bites, and so on until you feel they are eating an acceptable amount to incorporate into meals.

Now this sounds slow and laborious, and it is, but remember, they are fearful and many foods actually cause them physical discomfort.  Our goal is to decrease the physical discomfort and remove slowly lessen the fear.

A variation of this method is to use a “feeding train”.  Each compartment of the train contains foods that they like and then when they get to the caboose, it contains the new food.  The expectation that they interact with the food in incremental stages remains the same.

 

5)      The “trying plate” is another variation of this method.  Place new foods on the “trying plate” and allow them to take bites when they are ready.  This plate is separate from their breakfast/lunch/dinner plate.

trying plate

The Trying Plate!

 

These methods should be used at one meal per day, unless you feel that your child can handle it for two or even three meals per day.  I cannot stress enough these key points, no pressure and go slowly!!

Remember, our children are not just picky eaters, if they choose to starve rather than eat the food that you put in front of them you are not a failure!!!

Imagine Your Child With Sensory Processing Disorder

I have written a lot about ADHD, however, I have only merely breathed a mention of a lesser known challenge among kids today, Sensory Processing Disorder (SPD).  When many of you think of SPD you either have absolutely no idea what it means, or you’re like, “yes, yes, that’s when your sensors are processing all wrong, right?”  Well, in a way, yes, but do you understand what that really means for daily functioning?  I’ll break it down for you in a way that is most easily understood.

You have five senses, touch, sound, smell, sight, and taste.  Additionally, and less known, our bodies also take in information through body movement, position, balance, and muscle control.  During your day, these systems work seamlessly together to take in the environment around you- so seamlessly, in fact, that you likely don’t even register the workings of this finely tuned machine until a wrench is tossed directly in its cogwheel.  You have all put something in your mouth, like tapioca pudding, or heard nails run down a chalk board and had a visceral bodily reaction.  You shutter a little, maybe gag on that weirdly textured food, and are generally left with an overall edgy feeling for a few seconds.  What if you felt that way throughout your day, and you never knew when it was coming or what exactly will cause it?

Sensory overload is very real, and very challenging.  It is easy to see a child having a tantrum at a birthday party and think, “There is THAT kid, the one whose parents can’t control him, the one who needs a good spanking, or the one that is just a total wuss.”  Now, stop and think of that same child hearing experiencing the sounds of the other children running around the party like a heard of lions roaring in his head.  Consider that because his balance is off he has a hard time participating in the designated party activity without falling and this makes his sad and frustrated.  Ponder the fact that he doesn’t know where his own body is in space, let alone how far away he is from the kid he is supposed to “tag”.  Now, look at him again.  Does it seem strange that he is cowering in the corner and crying?

man tantrum

SPD infiltrates every aspect of a child’s day.  There is no time in which your body is not using its sensory system.  This is just a small picture of how it affects a child.

 

It’s 4:45AM, your child rolls over in bed and tries to go back to sleep, but a bird chirped outside and it might as well have been as loud as a bell ringing directly in his ear.  He glances at the window and notices that it’s just starting to get light out.  Time to get up, there is no going back to sleep with cacophony of birds and the bright light peeking through the sides of the blackout shades.

Breakfast time, he’s already tired because, well, he’s been up for three hours.  Food choices are severely limited.  This is not just a picky eater, this is an eater with sensory issues, a completely different ball game.  He struggles to get down the same thing he eats every morning, a cooled toasted waffle, with a THIN layer of butter- because too much butter makes the waffle soggy and that feels “weird” in his mouth, a cheese stick- right out of the refrigerator because if it’s sits around for more than a few minutes it warms up and gets “squishy”, and if we are lucky some apple slices, but make sure that there are no bruises or excess skin hanging off of the slice, that would deem it garbage.

Prep for school comes next.  Brushing his teeth only happens with one specific flavor of tooth paste and a very soft bristled brush-  it’s important to keep that gag reflex in check (this issue also makes going to the dentist a nightmare).  Socks must be perfectly placed on the feet and ankles; it’s impossible to put shoes on if there is even the slightest imperfection!

Bus time!  It’s important to sit in the front and it makes him miss sitting with his friends.  But let’s face it, the bus is loud, a sensory overload nightmare, and it makes his body out of control.  When his body feels this way he lashes out and someone might get hurt, or, say, hit in the head with a seat belt.  He’s a young child and only has a mild understanding of what is happening to his body in the moment, he has yet to develop the skills to control himself all of the time.

School… so many different challenges throughout the day.  The cubbies are in a small space and sometimes all the kids gather there at once, he feels claustrophobic and sensory overload is imminent.  He tries to get out of the area but there are just too many bodies in his way.  Overload begins, he is being crushed into a small space with no movement and he starts pushing kids out of the way so he can get free, breathe and calm his body.  Being surrounded in such a close space by so much (kids in this case) is overwhelming, he can’t figure out how close he is to the other children and then when he bumps into them it feels like he is hitting a brick wall that is blocking his much-needed freedom.

He tries to sit and complete his work, but the students next to him are tapping their pencils and moving around in their chairs.  Don’t they know that that sounds like a symphony of distraction and makes it impossible to focus?

Lunch brings its own trials.  Don’t forget that most food is unappealing and has too much flavor to begin with (he has broken out into a cold sweat from certain brands of chicken nuggets that are “too peppery”).  Now add yelling, excited kids to the mix and eating, though being hungry, is practically impossible.

The afternoon wears on and the 4:45AM wakeup is taking its toll.  Any resistance he has had of keeping it together is fading fast and sensory overload comes quickly, often, and hits hard.

After school, he wants so badly to participate in activities but he is shot.  The lack of sleep, adequate nutrition, and heightened bodily awareness work against him.  After some quiet time, he may or may not be ready to participate in an activity of his own choosing.  Translation: there are things he wants to do, to learn, to engage in, and his body just will not afford him the ability to do so some days.

Night time approaches and it’s time to bathe, we have the same argument over washing his hair that we have had every night for years, his hair follicles hurt.  Moms, imagine what your head feels like after you have worn a ponytail for too long and you finally take it out, it’s sensitive, right? I assume that this is what his head feels like all the time.  Fully submerging his head under the water to get the shampoo out… a nightmare.

Finally, sleep time.  Luckily, he is so exhausted from his early wakeup that there is not much resistance.  His body is done and desperate for rest.  Some light scratching on the back and a few deep tissue hugs and he is out like a light.

 

This is just a snippet into a day with SPD.  It infiltrates every aspect of a child’s life because one’s sensory system is always engaged.  It makes certain sports impossible, some types of parties a nightmare, eating, learning, and simply playing with friends a challenge.  Some days it’s not noticeable, and other days it’s a constant struggle from the minute he wakes up until the minute he falls asleep.  So, next time you see a child having a fit in the middle of Target, ask yourself, is this child a “bad kid” or just possibly having a sensory meltdown?

 

sensory-overload