Seizures.... a Poem

A Mother's Perspective of a Seizure........

It’s putting your nose under his cheek so that he can feel your presence to know that you are there, while his tears are falling on your face.

It’s telling your son, “It’s OK baby”, when you don’t know if it will ever be ok.

It’s singing “Jesus loves me” or “Peace Like A River”, while... praying to God that they will never come back.

It’s having to gently sweep your son’s face to comfort him so that he can not be scared to go to sleep.

It’s watching him struggle to breath and gasp for air, while you watch helpless.

It’s praying to God that he will wake up the next morning so that you can spend more time with him.

It’s sitting up at night, getting your thoughts together and typing your feelings, so that you can express a mother’s love.

It’s hearing him scream, because he is terrified that one will come back and control his body.

It’s knowing that he is dealing with something that you can not control with money, love, or power.

It’s holding your head and hands up because it’s out of your control and you give it to God to conquer.

It’s hating to say the “S” word, when the word “hate” is not strong enough to tell how much pain they cause.

It’s testing a Mom’s Faith, when that is all you have left.

It’s crying your eyes out, when no one is looking because you are suppose to be the “strong one”.

It’s being grateful for each day that you have and appreciative of the small things that God gives to you.

It’s knowing in the end, there will be a time that God will be in control and these horrible seizures will not be.

Sharlie Lee

Grayson -Six months

Happy half way there birthday Baby Grayson!

We had our 6 month well baby check and mean old shots today. He also got the flu shot. So while he will be held for the next few days, I am glad to have a few months off.

Grayson is not a fat baby. He weighs in at whooping 15 pounds but stretches to about 27.9 inches. He is 90th percentile for height, under 12 percent for weight and his head is 10 percent. So I have a tall, skinny small headed baby. Just perfect for me.

Grayson has eczema that we thought was food relate. It isn't. He will now be having a special cream and bath and laundry soap for a while. He is back to eating just first foods. And he is still sleeping in my bed. I still exclusively nurse him. He will not even take formula for rice cereal. I guess I have my dream of nursing. It is free. I save us a lot of money a month.

We also discussed some things that came up in a family discussion, scratch that, family bag on my parenting skills, about Tyler's weight and nutrition and what he is getting to eat and if it is harming "what little brain" he has. The answer is NO. What he is eating is what every six year old is eating. He drinks what he does because of a problem called sensory processing disorder that is a REAL disorder. For that disorder he sees a therapist 2 times a week named Bryan who works on his sensory processing. So we have also gotten him to drink juice every day. ( which ruins his teeth so we see a dentist for that) We ran a nutritional panel on Tyler when this came up and it is just fine. He will be getting a bone density scan, Not because said person thinks he isn't eating, but because he has cerebral palsy. They want one to check how his bones look. Kids with CP tend to have more brittle and not great bones. NOT DUE TO NUTRITION . He also gets viactiv chocolate half a chew when he will take it. So he gets his vitamins in. He is also offered "fruit snacks" that are really chew vitamins. He also is offered fruits at EVERY meal. So that concern, hopefully, is void. And his brain is doing fine.... "what little bit he has."

Gryson is meeting ALL his milestones a bit early. We are hoping to see him crawling in the next few weeks. Looks like while big brother is at therapy, little brother might be able to get some too!.

Sunday "home" school

Our local ward and school has had a few "letters" sent home about the outbreak of a bit of pertussis in our area. As a "freak out of germs" kinda girl we decided that we would have the sacrament brought to us and we would "home school " Sunday school Ty for a few weeks to keep the germs at bay. Yes, we know he goes to school, however, he has six kids in his class and the bus has 7 ( six of which are in his class) so we have been somewhat free of germs for a month. ( knock on wood!)

Next week, Ty and I will be going and Dallas will be staying home with the baby since he is most at risk of RSV and pertussis unless otherwise directed at our appointment next week. But this week, I got his lesson ready and we sat down this morning and did his Sunday school lesson. We played a choose the right scavenger hunt.

We did small things. First was choosing if we should clean up our plate from breakfast or leaving it there. Then we went upstairs and decided if we should CHOOSE to pick up our clothes or leave them on the floor. We wondered if we should CHOOSE to help Grayson with a toy. We then got to the heavy stuff. Should we CHOOSE to be nice to our friends. CHOOSE to do what mom and dad asks or Choose to sit on a chair ( this is a big problem right now!)

Baby Grayson- The sitter

Baby Grayson is the cutest thing in the entire WORLD!! Ok, ONE of the cutest things in the entire world. We are so happy to have him in our home and some day he will want to let someone else hold him and kiss on him and MAYBE even feed him. But till then, oh the smiles we get.

To make it even more exciting and fun and heart happy, he is SITTING. We still topple now and then but overall we are upright and VERY happy. He is definitely loving it and so am I!! He loves to be where he can see everything and would rather DIE than take a nap. But he is SOOOO much fun and so stinking cute.

And just so we don't spew unicorns and glitter he also has a mommy problem, a boob problem and likes to be held... but who can resist THIS!!!

" Being Retarded"

Recently some things transpired in my "world" and the R word was thrown around as a verbal assault. I was VERY offended. Thankfully it was not directed to or at my child or there would have been a full on assault.

Somehow the "special needs" world isn't so big, and a post was put up just after Christmas from a mom posted a blog titled "Being Retarded" and found the blog very very accurate and very good.

Here is the post. *I am not including the picture of the girl but you can go to the link if you feel inclined and read the post directly to see the photo of a VERY cute girl!*

All around me, people use the word retarded without a second thought. Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad! But really! I was being so retarded!”

Sometimes, I let it slide. I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.

But what does it mean to be retarded? Well, I know what it doesn’t mean.

It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.

It doesn’t mean not being able to find your car keys.

It doesn’t mean saying the wrong thing to a person.

It doesn’t mean forgetting your best friend’s birthday.

It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.

It’s not something to describe your computer, car or phone.

According to Merriam-Webster Dictionary the word “retarded” means -

: slow or limited in intellectual or emotional development or academic progress

For me, it’s not just any old word – it’s my daughter. My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.

In our household, being retarded means something different.

It means not being able to fully care for yourself.

It means not understanding what the doctor is going to do to you.

It means not being able to explain what hurts when something hurts.

It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.

But ever the optimist, I also know that retarded means…

…never realizing the negativity behind the word retarded.

…never knowing the insensitivity surrounded the word’s usage.

…never realizing the ignorance of people.

…never knowing how other people view you.

Being retarded also means…

…loving unconditionally.

…finding joy in the smallest of things.

…being self-confident.

…not realizing that there are limitations.

…innocence.

This is Maura. Her diagnosis? Cognitively disabled. Which means retarded. When you call yourself retarded, you’re also calling my child stupid. Because you use the word as just that – another form of stupid.

Let’s get something straight here.

My daughter may have cognitive issues. She may have delays. She may never live on her own. Scratch that. She will never live on her own.

But Maura is not stupid.

In her own way, Maura is very smart. Maybe smarter than us at times. She has more self-confidence than anyone I know who’s called themselves “retarded”. She is the best judge of a person’s character than anyone else I’ve ever known.

Yes, she is slow to learn things. But she is not stupid.

I know that most people don’t use the word “retarded” maliciously. Most people I know use it in a self-depreciating way. And when I point it out, they go “Oh wow! I’m sorry!” and they truly feel like a heel. But the thing is, you’re still using it in the way that people who do use it maliciously use it as – to describe stupidity.

So why not just use the word “stupid” instead? Because I know what “retarded” is. I live with it in the form of my daughter. And in our world “retarded” doesn’t equate to “stupid”.

* Please visit the blog!! *

Tyler has a diagnosis that makes him delayed in many ways. He is not 100 % of his peers. He goes to a class that is for delayed children. He attends with autistic children, down syndrome, and many other diagnosis. He is BY FAR the most handicapped person in his class. Meaning he is affected on EVERY level. There is not one of the five senses of Tyler that is not limited or "retarded."

But what Tyler posses are all of those things the mom says. He is innocent. He will NEVER know hate. He will never know that the words that verbally assaulted me to the core, are words that are of hate. He will never understand that. He just doesn't. He will never realize that he shouldn't love unconditionally.

He is smart. He is very smart. He knows so many things and he gets things. He is a very special kid with a heart of gold and the spirit of a Giant.

Amsterdam International

For those who have read "Welcome to Holland" this might help with the early stages of how it feels. As an older "Holland" resident there are times after having left the airport that I find myself having to go back in. When we get thrown a curve ball, have something new pop up or even just have a bad day, they are fewer and further apart but they happen. It is hard to find the support and understanding from those who never went to Holland. The truth is, they won't get it.

And in all honesty of what I have personally experienced a chronically ill child and a kid with special needs is VERY different. Those they have life long issues being sick, having them not meet milestones and be considered "retarded" dumb or be treated differently or being left out is FAR Different than a blood draw, or daily meds or some other "easier" thing. (* that is my opinion, and not always that of other people... just how I feel*(

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Sensory Processing with anxiety on top

Ever since our Infamy day our lives have changed. Something about life right now is not right. It is off balance and kinda out of sorts. But not just the balance. But The brain. Ty's brain to be exact. It is like in the last month I have gotten a child I hardly recognize. It is heart wrenching, frustrating and OH so sad.

We have known for awhile that Tyler has some sensory processing issues. For those who have spent any time with us and have tried to do something that involves talking toys or loud toys, you have watched the response and know it isn't "Normal" but we have easily adjusted to a quiet house hold and we don't always notice. There is no stroll down the toy isle for us. It just doesn't happen. He hears a talking toy and it is all over with. But what we haven't ever had was the meltdowns to the point of anxiety over taking him until he can get home.

In fact, he doesn't even want to go anywhere. Normally if I said I was going to the store he would be all over it. Now, he says " I will just stay here with Dad. You go all by yourself." If we tell him we are going home ( after we do finally get him out) and need to detour, we will literally be facing a new world war.

Case in point: We were in Logan and we were leaving a very busy, full house (sensory overload #1) and said we were going home. On the way down the canyon Gray's started crying (see above sensory issue). We opted to pull into a gas station to nurse. We stopped, we were not at home, screaming Tyler melting about wanting his home NOW. Gray's, a distract able nurser to start, wasn't having it and thought it was a game. We started down the freeway. Gray's cries harder, we pull over. This time enticing with drinks at a gas station. Meltdown central in the parking lot. The drive home was more "wash and repeat." At one point, Gray's was crying, Ty was covering his ears crying and I was in tears.( It's no wonder we need xanax in this house.)

So the sensory stuff isn't new. But the not being able to handle a change in routine is bizarre. The anxiety is intense.But the hardest is the stuttering. But it has changed. Meaning he now will not even get the first sounds out and stop and hide his eyes and say " oh dear" unless one of us can help him. It gets incredibly bad when he is over stimulated or if he is anxious. One of us will help him with the word he is looking for because we generally know based on what is going on around him. But it is sad and frustrating.

He has a one track mind. That part isn't new either but how intense it is is VERY new. Case #2: One day he got in his mind that he wanted to go to a big construction job. It took us a while to figure out what in the world he was talking about. Finally, it dawned on me he wanted to go to the discovery museum that has a big construction job. I got out a picture and and asked him what it was and he got excited and I had guess right. He wanted to go there. We couldn't go the first day he asked. He literally asked for 3 days. Finally we couldn't stand the 5 minute intervals that accompanied the asking so we took him. But it hasn't stopped since finding out he was going on a wish trip cruise either. Only the beach doesn't have a date so we find our selves answering a MILLION times a day that we aren't going today.

His one track mind includes the dentist too. But he can't go till after the 1st of the year and he literally asks about seeing the dentist at least 20 times an hour and all one right after the other. The sad part, I will get his appointment and he will be all excited about it and sensory problem #1 will come into play and 2 people will end up in tears.

. We have to take inventory of his body every night. No really. We count the bruises and new open sores so I know what to watch for as far as breakdown. He can't tell us he is wet or dirty ( another sensory issue.. he can't smell things that are foul. Like if we toot and it stinks up the house or poopy in the potty he doesn't say eww... and he doesn't gag or notice) so he doesn't notice if he is wet. Which is fine, but I have to remember to ask/change/ check more often than normal. But he slides down the stairs on his tummy. He has no extra fat on his body so his hip bone ( where a diaper sits!) is a raw open sore. He has basically rug burned a hole in his hip. He doesn't feel it, doesn't say a word. I put cream on it at night and he keeps doing it.

In the past month his feet have gotten huge blisters. Like fingertip ( of mom's) big on his big toes on both feet. One was a blood blister, one was a regular blister and one was a huge cut. Do you think he notices? Nope. Not at all. So we have kept shoes off as much as possible with socks on to avoid dirty feet.

He doesn't notice his hands are filthy. We do of course and wash them for him but again he could careless. He doesn't like his hair combed and never has so he looks like a dirty, disheveled little kid.

All of this, in a course of 4 weeks makes for the wall of reality to suck. Not only do I as the mom deal with nightly anxiety because of my fear of another seizure, but the daily meltdowns, stuttering, repeating and the works are my job to listen to and most importantly show him that he is important and help with the words, reassure that we ARE going to the beach and comfort during a meltdown. It makes me realize that it will never be normal for us. That the idea of possibly wanting more children is out the window. There is no way that another child could help the sensory over load that even a pretty good natured Grayson brings. Not to mention the demands on me as the mom ( nursing, crappy sleeping children etc) to bring it to the table with therapy and the works. It makes it very hard and very sad as we stand in the normal world and the special needs world.

What makes it even harder is the lack of support. Meaning, people say dumb things. I have no place to go to someone who is sitting in my position who says yes. its OK. In stead they say dumb things. Well intended dumb things. I don't have the support of going out on a date with Dallas, I don't have the support to have someone at the appointments that we go to because Dallas has to work. I don't have the support during surgery and shot times and I don't have the extra arms and attention to give Grayson. I have one friend I can go to that "gets" it, but I don't have a familial relationship to do so to. So it is lonely.

D doesn't have those things either and he suffers silently when I am emotionally spent. Grays suffers when I am spent. My goodness it is his food supply for Pete's sake. Tyler is busy and wants friends to play with. Wants to go to people's houses when he is bored, but doesn't have the social skills to call and ask. Honestly. It is a VERY lonely road.

Tomorrow I am going to post about Welcome to Holland and the REAL Holland.. You know, the being stuck in the airport not wanting to be in Holland that I recently ran across. And really, we could use a lot of brain prayers. That things are truly calm in there. That we can get this figured out. That we can sanely... make it through the storm.