Part 2 and pic heavy! :)

Well, as you can tell, my well meaning "every day" post didn't happened! Instead everyone got this cold that won't go away, Thanksgiving came and went as did my oldest son's birthday! He is six now, where has the time gone?!

So, in honor of his 6th year here I will share the rest of his story.

Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!

Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight.  Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.

During this time he was also diagnosed with reflux. And began medication for it.

We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.

So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.

Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!

This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.

Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.

For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.

So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.

This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.

Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.

Right before the day he lost enough weight to hit 8lbs even, a mere 5 oz over his birth weight, the pediatrician stood his ground and took over the case. He came to me and told me that they could do a surgical procedure and put a port into his tummy for a direct line but, that they didn't think he'd survive. It was my choice though. He told me to have him baptized just in case. He listened to me about the stools and did a test. It came back that he had C. Diff. Don't ask me the proper name for it, I can't even say it, let alone spell it! I chose to forgo the port and stick with the NG tube but, most importantly, when the pediatrician asked if I trusted him enough to take over, I let him. I had nothing else to loose and watching my son starve to death was becoming more than I could take.

He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.

That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.

When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.

Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.

 Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.

Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.

He was almost 9 months old when he yanked the tube out on his own for the last time. He was chubby and healthy then.

He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.

This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!

Other than being a bit small for his age, you'd never know. Never. On the days when I cannot get myself to look on the bright side, when getting out of bed seems to be too much to do, when I do not want to do another IEP, specialist or doctor's appointment, I think of all he's gone through, all he will and I get off of my pity pot and just do it.

What I am thankful for part 1

Since today begins the week of Thanksgiving, I plan on every day posting something that I am thankful for an then telling you all why, whether you want to hear it or not! ha ha 


Every single year for the last 6 years almost, my heart, and head is filled with thoughts of many things. I am most grateful for my son.

well both of them but, 6 years ago on the 30th of this month, my oldest son was born. 


What is suppose to be a time of happiness and celebration or most was one of the most frightful times of my life, the second most frightful time was when my second son was born. 

When DW was born though, I was 39 weeks pregnant, my uterus had easily shoved my heart, lungs, and every major organ way up under my ribs months ago. At a mere 34 weeks pregnant, my uterus measured 43 weeks! (It is why I have no sympathy sometimes when I hear a woman pregnant  with only one child! lol) For those who have no idea what this means, it means that I looked quite frankly like I was having not one baby, not two but, closer to 3 or 4 babies. Everywhere I went, the first two questions I got where: "How many babies are you having?" and when they would hear only one, it was immediately followed by "Really? When are you due?". I was huge. It was called Polyhydramnios. In simple terms it simply means excess water in the uterus. It is usually a sign that something is wrong. Though no one told me this upfront. All that they said was that they wanted to keep an eye on the baby.


I remember several weeks before going in to be induced I started feeling like I was wetting myself. Nothing gushing or like it normally feels when your water breaks (if my water would've broke normally, the whole neighborhood would've known, TRUST ME!). I just felt like I was dribbling all the time. They told me that it tested positive for amniotic fluid but all sorts of things could make me test positive. They couldn't feel the uterus so, there was no need to worry. Now I know better. 


After two days on pitocin, not a fun time, and no baby, no nothing. They called in my specific OBGYN. I'll never forget the look of contempt on his face when he turned to the nurses and said, "her birth canal is bent!", almost like they should've known. Which did explain feeling like they were shoving their whole hand up to check! lol So, all my plans for natural childbirth went out he window and C-section was the only option. 


DW came out normal enough or so I thought. He was crying and everything. My perception of time though gets a bit muddy looking back. It took 2 spinals to work and I was then unable to move my head or swallow! Then I began hemorrhaging and after that, it gets all grey. I remember them bringing him to by my head and someone having to turn my head a bit. I remember mustering up every last bit of will power I could to move my arm to touch him, I needed to do that. It kind of flopped up and over in his direction but, was able to move my finger on his cheek. As I spoke to him, he began to settle down and not cry. I felt overjoyed! He knew who his mommy was! A few hours later I would come to regret that moment. I should've let him cry. While I know that this really wouldn't have mattered in the long run, I still wonder if those minutes where he wasn't crying, would've made a difference.


The last thing I remember clearly was touching him and then it all goes grey. I almost died that day. 


When I came to in the recovery room, I was so groggy, unable to open my eyes or move much at all. The nurses running in and out of the room. Whispering but, I couldn't make it out. I remember my mother coming in and my husband. Both of them overly supportive of me but, not saying much about DW and though I registered this, I was too dopey to ask why. 


They left me and after some time, another nurse came in and sat there at the side of my bed, I could hear here there, sighing and sort of like she was making up her mind. I remember her touching my shoulder and saying, "I don't know where your nurse is but, I think that someone should tell you, something's wrong with the baby."


It is amazing how your brain can do two things at once. One part of me immediately started doing an inventory of what I could move and then focused on keeping those parts moving so that I could move faster. The other part of me though immediately snapped out of the blissful groggy state, went into denial. Oh, it's nothing. They're probably just being cautious, etc. Though I knew I had to get to my baby. 


It's a weird thing a C-section. You don't get to see your baby being born, you don't get to immediately hold or really touch your child. So, that bonding is just not there, it was the maternal instinct that I have in general for children that kicked in for me in the beginning. Not the "that's MY baby" thing, that most others feel. I hadn't bonded with him and for many months, though I would act as though I did, I would not. NOT because of post partum depression either, just for the shear fact that I was about to be overwhelmed!


By the time I got to see DW, I knew it wasn't just something simple. He'd been blue when I saw him and though was turning a pretty pick, he'd begun to turn blue again in the nursery. The only time he wasn't blue was when he was crying. They tried to help him by clearing his airways but, were unable to get anything through to his nose on either side to get to his lungs, let alone anywhere else. So, they tried going through his mouth and hit a blockage somewhere in his esophagus too. A condition so rare, nurses and doctors will not see it in their lifetime usually. One doctor realized that the blockage in his esophagus was a partial, softer blockage and as bad as it sounds, gave the tube a harder shove and pushed his way through. At this point it was an emergency to do this. Babies are born unable to breath from their mouths, only out of their noses and it was clear to the staff, that DW could not and without a proper way to intubate him, he would die. 


When I saw my sweet, sweet angel for the first time, he was covered in wires and tubes.

 It is an odd thing as a mother to see. The NICU nurses were nice enough to let me hold him, though every time I would move him, the tubes would shift and he would gag, the wires would move and the alarms would go off. I held onto that little baby. Trying to get a feel for him, how he felt in my arms but, instead all I saw was tubes and wires. The next day, he had to be transferred to another NICU acroos town. I was lucky enough that he was only shipped across town, if I had, had him anywhere else, he would've had to leave the city I was in to come to the hospital here, the only one regionally with a specialist who could do the surgery to correct his nose. Still, knowing that your baby was across town and you would be here for another 3 days was NOT ok. So, after only 36 hours after a very serious and complicated C-section, I begged, pleaded and ultimately convinced the OBGYN to let a VERY anemic me, out of the hospital so I could be with my baby. I had agreed to only a few hours a day visitations in the NICU, being wheelchair bound for at least 3 more days and being careful because I was really anemic. I did none of those things! 


My first day out of the hospital, I spent 8 hours in a wheelchair by my son's side. The second day, it was 6 hours and then a small break to go home as I was feeling very sick and needed to pump. I returned for another 4 hours. No one could convince me otherwise. By not quite 48 hours out of the hospital, the wheelchair had begun to annoy me and I ditched it! It was not easy to get in and out of a chair but, I didn't want to be a burden on everyone. DW had his first surgery that next day too. 


Nothing is more scary than knowing that your baby, not even a week old is going in for surgery. Never mind that he could come out blind, or brain damaged. It is just that they are so young, I would not wish it on any parent. 


Needless to say he came out fine. The prognosis was good, he might have some kind of brain damage from the lack of oxygen for a couple hours after birth, the whole in his heart was not too big, his kidneys, while VERY small were functioning and though he'd failed his newborn hearing screen, he was alive and ok. There was a chance that this would reoccur but, for now he was ok.


I remember the first time that I saw him without tubes and wires, I didn't recognize him! I remember asking my husband, "is this our baby?!" 

We left the NICU on December 8th. Before Christmas we would be back. Our first two holidays, with our new baby boy was spent in a hospital, praying that he'd be ok as the specialist was out of town. His 2nd surgery was almost to the day a month after his first one. Leaving the hospital this time was not a happy experience either. I will simply say that there were things that had to be done to his nose that we had to learn to do at home.....thank god for my mother. I physically was unable to do it and she could! 


One month later, things were good. Well, kind of. He was SCREAMING....I don't mean crying, fussing or any other such nonesense, I do me full on SCREAMING! He would do this for 8 hours or more a day, not stopping to eat, to nap or breathe! I remember one night after my husband had gone to work at 2:30, DW began his tirade about 3 and was still going by 11pm that night, it was freezing outside but, I could take no more. Feeling like a failure, I snapped him into his swing and walked outside in the night, with the phone in tears. I remember calling my husband and my mother. 


A few weeks later, my mother was there and DW began his screaming again and I refused to let anyone hold him, not because I'd bonded with him yet, because I had not yet, it was because I had the mentality that I was his mother, I should be able to handle it, make it better. I remember my mother saying that it was normal, she just kept repeating it to me until I finally found myself wondering. Later that night, she changed his diaper and there in his diaper was blood! 


We found ourselves back at the hospital almost a month to the  day from our last stay. This time he was diagnosed with MSPI (milk soy protein intolerance) and Failure to Thrive. I will share what the next two and half months brought with this, tomorrow. Until then, if you read this, hug your little ones a bit tighter and take a moment to remember that there are whole families out there with their babies in the NICU, whose lives have stopped as we go on with ours. 

An SPD Holiday Giveaway!

I have written here once before about Sensory Processing Disorder in the hopes that some passing people would find it, learn a little something, research, ask questions and share what they have picked up.

Today I am writing about it purely for selfish reasons! :) If you know anything about SPD, you've probably become familiar with Hartley's Life With 3 Boys. If not, it's a SENSE-ational blog which not only inspires special needs mothers of all walks of life but, helps to make us not feel alone, misunderstood and crazy. It also has served as an amazing platform for spreading the word about SPD and the daily and life challenges this disorder can bring. Today, she is partnering with Soft Clothing to have a 1st annual Holiday giveaway!

There are 2 Grand Prizes that will be given away. One for boys, one for girls and will each include the following sensory friendly items, (which focus on fine motor development, dramatic play skills, sensory integration, creative expression, auditory exploration):

Quilted Train Stocking from Pottery Barn Kids (boys prize)

Quilted Angel Stocking from Pottery Barn Kids (girls prize)

This is Gabriel Making Sense of School, by Hartley Steiner (That's me!!)

SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)

Glitter bouncy ball from Pottery Barn Kids

Alex Finger Crayons

Tangle Textured Jr

AKU Sensory Ring

Melissa and Doug Jumbo Paint Brushes (set of 4)

Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet

Wonderland Eco Friendly Rainbow Sound Blocks

Mood Therapy Putty

Soft Seamless Sock 2-pack

One complete Soft dressy look for girls OR

One complete Soft dressy look for boys 

So, if you know of an SPD kiddo, by all means pass this along! Click here to enter the giveaway!

Living in the Land of the Hearing..

So, my husband got his new hearing aids last week and while I know that the one will not help him entirely to hear, I've found myself shocked at how well these new ones work for him!

He still asks me "what" a lot of the time but, he can actually hear me!! The first time in 9 years and it is bizarre. I've found that over the years whenever we would get into a disagreement, I would mumble under my breath with my head turned and felt quite comfortable knowing that he could not hear me. He still can't hear me exactly but, he can hear that I've said something...whoops! :)

I've found that since our oldest son has gotten aids that I have become painfully aware of how much I made them both live in the hearing world. Making no accommodations or being forgiving when their hearing didn't jive with how I perceived the world. All I saw was my burden of having to answer the "What" all the time or having to go to every conversation that my husband would have, every doctor's appointment, etc just to retell the whole conversations all over again. I always had to be within arms reach of the phone as no one else ever heard it ring. I suppose I could go on and on with "burdens" but, as I said, I've become painfully aware of all that they've had to endure from the d/hoh end.

They both couldn't go anywhere without me because neither one of them could hear people. Neither one of them wanting to ask someone more than once what they said. Not to mention that people looking away as they spoke made it much harder for them. So, they both became reliant upon me to relay communications, even between each other.

My voice especially happens to fall within a range that is hard for them to hear as well. So, my ever growing frustration with having to repeat things, always have to be around one or both of them, having to rely on someone else to do phone calls, drive thru window orders, etc with a voice that neither of them could hear very well...I can't imagine the frustration.

I've taken my time now to lower the tone of my voice and raise the sound of it, to face them when speaking and make sure that my stepson does as well. I still turn down the TV now when they are speaking on the phone, out of habit and courtesy. I still am there for every conversation, meeting etc but, the need for me, is less. It is a nice feeling!

While I am glad that they are hearing better, though I often wonder about DW's as he still asks "what" a lot, I have come to realize what a hearing world often asks of it's d/hoh members. So, instead of making my husband and oldest son live in my world, I am endeavoring to live in theirs. It is a novel idea to say the least and with DW and his TS+ it is still not easy but, I am giving it a hearty go!

*Though when your son turns to you and says, "if you don't start being nice, I'm going to shut my ears off", it may not be a good sign! :)*

Sensory Processing Disorder

If you're like me, your response is what?

The first time I heard SPD in it's full name, I had no idea what it meant. I had never heard of it before! It is a term that everyone should know. As of today, 1 in 20....that's ONE IN TWENTY children is affected by it!

It is a long explanation of what exactly it is. It is a spectrum disorder just like TS or Autism. It never affects any individual in the same way and what works for one child, may not work for another. So, if you are familiar with either of those disorders, then you know an explanation is a bit harder to give to someone. It is almost easier to explain what it is not!

It is not some twisted game a child is playing to get his or her own way. It is not a "behavioral problem". It is not an undisciplined or ill disciplined child. It is not a parent looking for an excuse as to why their child is behaving in such a way. I think that about covers all the normal reactions of those that have not heard of it or don't believe in it.

What SPD is, is a neurological issue. It is how these children's brains are wired. They have no control over it, it is just how they work. Some children are very mild and can pass through life with a few "quirks". Others are way more severe and require a lot of intensive physical, speech and most importantly occupational therapy.

Imagine if you can, having a day where no matter how dim it is outside, it feels like you've got a spotlight aimed at your eyes. That no matter the level of sound, it is like someone is talking to you through a bullhorn all day. On top of that, your clothes feel like wool on your skin, itchy and scratchy. You cannot turn down the volume, you cannot change your clothes and you cannot dim the world around you. At the end of most likely 20 minutes or so, an average adult is at their wits end!

This is how an SPD brain works. Only it encompasses a myriad of other sensory issues besides, hearing, sight and touch. It includes where their body is in the environment, how their body feels while in motion or still, how things feel in their mouth, not just taste, their sometimes extremely sensitive sense of smell. It all ties in together.

For my part in this explanation, I have 2 boys with SPD! Funny enough the complete opposite of each other's issues! DW is mostly a sensory avoider with seeking behavior and JD, my youngest, is the one who doesn't register much of anything with seeking behaviors, poor coordination and some delays.

The first time I knew something wasn't quite right with DW he was only 3 months old. I realized that unless he was being rocked, in a swing or some kind of constant motion, he would not sleep. Then when he was finally into stacking blocks, he had to always do it by color. Cars had to be lined up in a row. He would not by a year and older walk on the grass. He began to choke on mashed potatoes!! No matter how watered down they were. He could not eat if he had to touch the food. He could not be fed with metal utensils or he'd just not eat. Chicken nuggets became a no no, too many crumbs in his mouth and forget about him touching them! He was unable to actually wash his hands in water but, could take a bath just fine. Noises did not bring out the best in him, which always struck me as funny because he's been loosing his hearing little by little since birth. By 3yrs old, I knew enough was enough. He'd stopped napping completely before he hit 2, he was now LITERALLY spinning all day. Or jumping all day, or running LITERALLY from one end of the house to the other, ALL day!! If these seemingly odd things at the time, were not met with and cut off at the pass, he would loose it. Taking him out of the house was even worse, he would constantly complain about the lights in the stores and how they bothered his eyes. You had about 10 minutes tops before he would meltdown to leave. He would perseverate if we took different ways to and from the stores, a relative's house, etc. He began to have clothing issues, where tags, seams, etc where he would scream and cry that they were hurting him. The list is really endless but, needless to say that when this begins at 1yr old to me, this is not a learned behavior!!

JD, my youngest, it takes two people to change his diaper, he does not register where he is in the space around him most of the time, how his body moves. He does not register getting smacked in the head, sounds don't bother him in the least. He cannot seem to tell the difference between hot and cold. He will over stuff his mouth at every opportunity and not out of hunger. He would eat all day if I let him! So, he eats every couple of hours. He is constantly seeking input, needing to always be on the move. Again I could go on but I will spare you all the pain of going on and on.

To prove my point, that this a NOT a learned set of behaviors, my little sister used to introduce DW as "the most well behaved boy you'll ever meet"!! I am not a dictator but in the house, we have rules and discipline is a high priority. With a stepson who had ADD, there was just no other option. So, it's not like the kids have the run of the house. Especially when DW came up with TS, ADHD, OCD, etc. Discipline became the backbone to the house. That's not to say that we don't have our days and our life is perfect, far from it really. It is just show that it is not a foreign concept.

Another thing about SPD that most don't know, it is usually genetic. Though they cannot find the gene, or the marker. They cannot even see it on a brain scan but, it is noticed to run in families. For example, it does run in mine. Though back then, SPD was less well known my little sister and I had it. My little sis, could not handle the feel of jean hugging her hips, nor the feel of jello in her mouth. I would scream and physically fight with my mother at a whopping 4yrs old over my socks. The seams felt like razors across my toes. I hated the feel of the wind on my bare arms, and legs during summer but preferred to wear shorts inside, even during the winter. I could go on but, would be here all day. The point really is to show that this is not behavioral, it is not a learned behavior it is how people, these children are wired!

Lastly, the signs that people almost immediately recognize as autism are those of SPD!! It is not questioned then. When it comes with a comorbid condition like TS, ADHD, OCD, etc. Mothers and children have to fight to get the recognition that they deserve. They fight to get their children treatments, to get this recognized in some way by the insurance companies. Most of the time also battling friends, relatives, school systems and even strangers! People who maybe trying to help by offering their opinions and advice, who have never heard of it, who do not see what these kids go through daily and are going off what they know from their own limited experiences or lack of knowledge. The only thing that has shown to help children with SPD is Occupational Therapy. It can take years and a lot of DAILY intensive therapy to make progress.

For anyone that actually reads this post, we are now halfway through Sensory Processing Awareness month. I urge you to get online and research, ask a parent, talk to someone. Get informed. Do your part to pass on the information and knowledge.

Had a moment...

I wish I was one of those moms who could switch the diet and he was miraculously better. Since he has Sensory Processing Disorder though, and oral issues are a BIG deal to him, that is not possible for him. I wish that he didn't have ALL that he does and that medication hadn't become necessary.....I could list my wishes all day long I suppose.

The other day, it just got to me a bit. I have those times when I look at my son, his tiny, skinny little body. The same body that we're fighting to keep above a certain weight line so he will not be diagnosed as failure to thrive again at almost 6yrs old, the same little body that now seems so fragile compared to other kids his age and it becomes a bit much.

I got him up this morning, put on his feet and ankle braces, checked to make sure his hearing aids were cleaned and put them on, mentally reminding myself to call his audiologist to see if we can get a new mold for his left ear. I went to the kitchen to get his meds. I grabbed the medicinal syringe as always, opened the Vyvanse capsule and dumped the contents into it. I carefully split his Inderol and crushed it, putting it into the syringe. I pulled out an additional pill for him to swallow. Filled the syringe with the Periactin. I got the Intuniv out and sat it next to the Inderol pill. I got out the new medication, Abilify and carefully put it next to his other pills to swallow.

I got his juice, his pancakes and headed to give them to him....I saw my little boy, sitting there happily watching the Disney channel. Looking content, his Ironman braces peaking out from under his jeans and over the tops of the shoes he must wear all day long. I saw his hearing aid light flash from behind his ear, to let me know that they are still functional. I felt the weight of the tiny pills in my hand and mentally counted the four medications to make sure that I had not forgotten everything. Realizing that I was only missing the Trazadone, which is his nightly medication to help him sleep, the thought crossed my mind to remind myself to call the doc again as the Trazadone was once again going to need to be increased. He just adjusts so fast to his medication.

Then it hit me, my tiny little man, with the aids, the braces and his two Blue's Clues pillow/dolls next to him, was taking four medications this morning, two this afternoon and two at night, five in total. My sweet DW was going to be taking all this. It broke my heart.

Holding back tears, I gave him his juice first (yes there is an order, there is always an order to things with him), then I emptied the syringe, handed him the "blue oval", the the "blue round" and then the new bluish pill. Thinking that most kids would object to yet another thing that they have to swallow. Instead, my sweet angel looks at me and says "why do I have a new blue one?" I tell him that it's been here just had to adjust his other meds before we could give it to him and it's to help him with being angry and feeling upset sometimes. I don't dare mention that it is to help you not panic when we throw things in the trash, like wrappers, bad food, etc. This will always cause a panic attack in him. My brave little guy, just looks at the pill and says "ok". No real hesitation, no fit, no nothing. I was so proud of him and then a little saddened as I realized that this is just normal for him. That it is like putting on socks or changing your shirt.

I am very thankful everyday as things could be much worse but, sometimes, days like today, it gets the best of me and I have these moments where the tears are just too much to hold back. To look at YOUR little one and see all that they are doing, have to do, all that they endure, no matter the disorder, I don't think that it is ever easy.

I have finally done it!

It's a long story really how I came by this decision for me and my oldest son but, I finally legally am doing it!!



I now find myself a wee bit scared, excited nervous but, hopeful that this will work for him. After all I have been doing it since he was two years old. I only did it then though because I knew he was ready AND I quite literally ran out of things to teach him.


I know, you're saying teach him?? lol That's right this post is nothing tawdry or salacious, it's simply me openly affirming that I'm jumped headfirst into the homeschooling world!


I wasn't left with much choice in the matter really.


DW, who has TS, ADHD, OCD, SPD, ODD, etc...was born incredibly bright. Not just my momma pride bragging either. By 1yr he was speaking in complete sentences and not only speaking clearly but, using the words properly. By 2yrs he was talking in paragraphs, using bigger words than he should’ve for his age and even going so far as to correct our grammar or pronunciation if he noted something was said wrong. lol By 2 in fact, I ran out of what normal parents teach their child. He knew all the ABCs by sight, he knew how to count to 20, he knew all his primary and expanded colors, he knew all the basic shapes and then some, he even was doing 24 piece puzzles unaided! He was hungry to learn so, what was I going to do?! Sit and say my job is done? NOPE! I gave him what he wanted, he wanted to learn some Spanish, I taught him the little bit I remembered from ESL teaching back in high school. He wanted to learn writing his ABCs so I started teaching him. He wanted to know all about tornadoes, thunderstorms, etc. So, we bought books went online, etc. By 3yrs old he was cruising the internet like he'd been born with a mouse in his hand.


So, when he was placed into a special needs pre-K, I thought he would excel. He did too. In fact, he did so well that he became bored in class and his inattentive behavior became worse, he was more withdrawn having no challenges in class whatsoever and he began to get into trouble more and more. The thing he was going to school for, sensory issues and learning to socialize properly, was now going backwards. The school district cutting his OT and cutting it. He was withdrawing from class because of noise, his inability to hold still becoming more and more an issue. His TS tics becoming louder and more disruptive. It just became a nightmare for him and for me. So, I pulled him from it last year but, still it was only a preschool. The same preschool, he'd been attending for almost two years. No big thing really.




I chose to do this because:


A) he is at a mixed level. Half of him is at a Kindergarten level and the other is at a 1st grade level (Science and Math).


B) It is unfair to the other students....according to the school district, to make some of the accommodations DW might need. Such as a chewy device when he begins to chew on his writing utensils or clothes, a small yoga ball to sit on when he can't hold still so he can complete his class work, etc. While I was highly irritated at these kinds of responses, I understood their point.


C) As he's getting older, his tics are now more frequent, louder, a bit more aggressive and obviously, a bit more distracting to other students. His attempt to hold them in during public outings leads to explosive episodes when he gets home. That look more painful and are sad to watch.


So, when I decided to homeschool him. I did so because it would best suite him and his needs. Not from some idiotic, twisted need to keep my son with me at all times, as some naive people would have you believe! Believe me, it would be soo much easier if he were in school 8hrs. I would only have 1 child to focus on and run after. lol


I look forward to this year with some trepidation....worrying about whether there will be issue since he's special needs, worrying that the bad times will be REALLY bad, etc. I also look forward to it all! I remember as a child having to college level scores in reading, science, etc. I remember the boredom, intolerance and frustration of having to wait for everyone else to "get it". Even in the G.A.T.E. (Gifted and Talented Education) class, it was still more of the same. Waiting for us all to get on the same page, I remember just being aggravated all the time! If I'd had ODD and ADHD, among other things, I can't imagine how those years would've gone!


So, offering him the freedom to go at his own pace....slow down when and if he needs it or speed through something he finds child's play, is my gift to him. I know that he will not always appreciate that but, I know what it would've meant to me. I also know that it will allow him the freedom to be himself and I can't imagine a greater joy!


Wish us luck!

Never back a mother into a corner

I usually keep my mouth shut during political conversations among friends and family. Everyone is entitled to their own opinion, even if they do not have all the facts. I will more often than not keep my mouth shut, unless it is directed at me or my children. I am a passionate advocate for Sensory Processing Disorder and Tourette Syndrome as they have invaded and settled into my life through my children. These are the two things I am most vocal about when not even prompted.

The last two weeks have ignited a fire in me that I have not known before. It's taken years to get diagnosis for DW and we are just starting to get some help for JD's issues. I finally felt like there was hope for my boys, we were getting somewhere.

I know that there are differing opinions on medicaid and why you or your children should be on it but, when you've a child with special needs who requires loads of different doctors, different meds that can run thousands of dollars a month as well as physical, occupational and/or speech therapy that can also run thousands of dollars, you really end up with little or no choice.


For the first time in ages, I finally felt like my boys were getting the help they needed. JD was starting to talk more, make more noises, attempt words. The SLPs think he might have Childhood Apraxia of Speech. Which takes several weeks, sometimes months of visits to figure out.

DW was getting OT 3x a week and was actually able to tolerate being in the room with certain foods. He was learning how to regulate himself and I was learning things to do to help him at home.

Things were looking up, or so I thought.

The state changed health insurance companies. Suddenly, my two year old who cannot even say momma nor mommy is denied speech therapy on the basis that because he does not have a brain injury or a specific disease responsible for the speech delay! So, what does this mean for his future? In order for him to be functional in life or his future, I have to dish out thousands of dollars I do not have to help him or I'm a failure as a parent?! I'm angry, very angry.

Then they cut DW's therapy in half too! He is full on in the middle of getting his aids and orthotics to fix his feet, ankles and knees and now I'm fully angry! What does this mean for him?? I spent two weeks on the phone with the insurance company and then corroborating with the therapy center. We got 8 OT visits instead of the recommended 12 a month, so it's a small victory but, JD is still shut out.

I'm not the only mother they've done this too either! Hundreds of kids are now without speech therapy and it is not ok and it is not good. So, several of us have banded together to get help, we've called, written to the state insurance program and contacted the local television stations. Given them interviews and are prepared to go all the way up the state chain of command and then to the capital if need be.

You can yank me around all you want but, this is our children we're talking about here! Never back a mother into a corner who is protecting her baby, they never back down!

New medicine - again and a good day.

So, we tried another medicine to help lessen DW's tics. It was along the same lines as the last but suppose to be less as strong as the first or something like that. Within 48 hrs the same thing began to happen. He began to wet himself and by the next day, he again had diarrhea and this time, there was more than a speck of blood in his stool. So, we stopped it yet again. Not sure why though but, even though he's not taken any of the for more than a few days at a time and hasn't taken any in almost a four days now, they seem to have affected his tics. So far in a positive manner!

The blinking that he's had for years, the kind that contorted his face constantly, all day....it's very rare to see it now! Even on a down swing, this is the one tic that never went away, it was almost painful to watch even, his whole face would contort. In the last two days alone I can count the number of times I've seen it on two hands and feet, which is amazing. The HARD, sniffing and hiss breathing is so mild, that I don't even notice it unless I'm looking for it. He has gone from several dozen tics a day to just a handful!

The one that is probably the most annoying to everyone else though is the repeating thing. For example, today he said: "hey mom, I think we need that. Yeah I think we need that." or "I want nuggets for lunch, yeah nuggets for lunch". Seems to bother his cousins and stepbrothers more than me for some reason. Maybe it's hearing near silent grunting, no terrible sniffing that sounds like his head might pop off, no loud hissing after the sniffing, and loud triple grunting following all of that in less than thirty seconds. His tics are softer now, not OCD like - needing to be in groups of three or fours, they are random and mostly not back to back even. I don't really know if it happened from the meds or if it will last even. It could be just a big coincidence but, I will take the reprieve. Even DW seems a bit happier as his tics are not running rampant and wearing him down.

He's even taken to realizing that he cannot hear properly. So, instead of repeatedly asking us "what" a hundred times. He now walks up to us and asks us to repeat what we've just said. Which is nice for him and myself. His cousins had a time adjusting to his hearing today as they've not paid him much attention before but he told them he's getting hearing aids and they asked me why. We talked a little about what DW can and cannot hear. Which also led to a discussion about why Dathen repeats and what a tic is. So, it was a good afternoon for everyone.

So, for now, it's back to the drawing board for the tics but, I can wait. For right now, he seems ok and that is all I ever wanted for him. We'll also keep a positive attitude and hope that this lasts. :)

Hoping and Wishing and Thinking and Praying.

So tonight and tomorrow will be the tough.

Tonight they once again try him on a new medication to ease the tics and they couldn't come soon enough. When he gets upset or angry he smacks his head, HARD. Over and over and over again til he's crying but, he still cannot stop! If it's not that he'll claw at his arms and legs over and over and over again! If one more person tells me it's attention seeking behavior though, I may loose my marbles. Attention seeking behavior is behavior designed to get or maintain attention. When your child is doing it alone in his room because a toy is frustrating him, without calling for help or making a big deal out of it over and over again and doing it daily, it is not attention seeking. It is a part of the whole lovely package that goes with having TS child. So, I hope that this medication works for his level of tics and can bring them down like the last one did.


Tomorrow, is the ENT followed by the ear molds....I'm VERY worried about this. I don't know how he'll respond to the ear mold process and the feeling of something not only in his ear but, essentially blocking the hearing almost completely in one ear and then the other. I'm scared of how this will go and if he looses it, I don't know that I can calm him down enough for another ear. I really hope it goes well.

I've found a couple videos online that show him pretty much what the ear mold process is about and roughly how it will feel. Though, as I've never had one, it's not exactly easy to explain!! I wish it was done and over, that's how worried I am! I'm just praying like the dickens that this goes over well tomorrow and that if there are going to be any side effects from the meds that they do not interfere with tomorrow morning!

The sorrows of when a medication works....

Feeling a tad low right now.

DW was taking a new medication that works well in patients with TS. It was amazing and showed me my son again!!!

It has been years since I've seen his amazing, blue eyes, without the dark circles half way through the day and the exhaustion from the constant blinking. It's been ages since I've seen his beautiful smile without his face contorting from his blinking. It's been months and months since I've heard him be able to calmly finish a sentence, without chronically ticing. Even his the sniffing, that sounds so painful, like his nose may explode or a vein may rupture somewhere was so mild, that I might not even have noticed at all, except that I was looking for it. Every tic he had slowed to a crawl! A minute or more in between each one! It was like seeing him again for the first time....

Which was such a blessing, it gave me such hope a life for him, where he could function on a more normal level. As if having ADHD, OCD, SPD and hearing loss would really be "normal". Yet, if there could be a chance that he be accepted for just those things and no tics....

Well, true to any medication that seems to work for him, like Focalin for example. It was a great medication for his ADHD. It really worked well. Within a few weeks though, it aggravated his Functional Abdominal Pain. So, we switched out that med for something like his fourth ADHD medication. Every time something works and shows such promise, something in his body reacts.

When he came to me in the middle of the night the other night, and had wet his bed. I was shocked but, thought maybe the new medication had made him overly tired. When he woke the next morning and almost vomited, I knew that this could be a side effect but, he didn't actually do it. So, I thought we'll try again this morning. Late last night, he came out of his room and had not only had diarrhea but, he'd not been able to hold it til he got out of bed. He cried as we stripped his stinky clothes and redress him. This morning when he almost made it and slightly messed himself. I knew I'd have to stop the medication. Some the very rare side effects, where urinary and bowel incontinence, along with the vomitting and and dysphagia he'd told me he'd experienced before bed.

So, as he stood here shortly after lunch trying to tell me something about a toy, and he blinked, blinked, blinked, sniffed, hissed and upon exhale did his unhh unhh unhh, it was all I could do to not cry. It hurts to see him like that so very much, maybe more so because for a few days I saw him!! I saw my baby boy!!

Yet, despite how much it's disheartening, and as I type this now, the tears come down in droves, I remember that for a few days....a few days I saw my boy as he should be, without the struggles, exhaustion and pain that TS tics inflict on him. I saw able to sit still without the twitches. I saw him!! It gives me such hope to know that maybe there can be a new medication that is tolerable for him, that one day my sweet, little, angel boy will be able to have a life with less tics.

Three Signs of a Good Day!

First sign: DWs first dose of the new meds to help control or lessen the tics he has is down. Though I know it's fairly early to say this but...I'm trying to be CAUTIOUSLY optimistic! His tics have slowed to a crawl!!! Though it could be a very, very odd coincidence, I doubt it. It's been years since I've seen my son's face not contorted in a grimace from the blinking or wanted to scream from the NON stop verbal tics! I've become a pro though these last two years and know that I will not count my chickens til they've hatched. Meaning that I will wait it out before getting excited, see if there are side effects or if he adjusts as he always seems to do to new medication, especially when it's shown promise!

Second sign: I've gotten soo many responses from mothers with HOH or deaf children! DW has been invited to playdates, even picnics! I've got an appointment with the Nebraska Commission for the Deaf and Hard of Hearing to get the process rolling to get the device that will flash the lights when the phone rings. My husband would love this immensely! So, will I!! The lady there has already started looking for family ASL classes, though most likely I'll be the only one who can attend and will have to teach DW and his father! : ) We've been given a number or two to help with both funding to get my husband's cochlear implant for his one ear and two places to talk to about getting him hearing aids that are more suited for his kind of deafness!

Third sign: DW has SPD and is highly resistant to new textures or feelings. The thought of needing a hearing aid and having to have two, REALLY bothered him!! I've shown him numerous videos of kiddos getting aids, pictures of what his aids might look like. I called the audiologist lady so that he could be assured that his aid would not be white, as he's an aversion to white. Today he started talking about when he has his hearing aids this and that and if something is too loud how he's going to shut his ears off! lol When is he going to get them, etc. It was really a good thing to see. Now if he'll stay this way, is beyond me but, for today, it's a good sign.

Just wondering or rambling how all this happens in one child.

In light of all that has gone on with DW, I should just take it all in stride by now. Five years, almost six now of one thing or another. His nose defect and the two surgeries to correct it all before he was one month old, the SEVERE MSPI (milk, soy protein intolerance) and failure to thrive diagnosis. The NG feeding tube he had for ten months, the loss of muscle mass and abilities to move his arms, legs, head, etc. Followed shortly after the list of acronyms or diagnosis that follow his name most of the time.

I thought, this has to be enough. That is all that a kid could endure really. It is all he should have to endure! When they told me from birth til a few years ago that certain tones were inconclusive, they were unable to determine if he could hear them correctly, I knew that there might be a chance he would get the familial hearing loss that runs in his father's family. In fact I remember being almost certain he had it. It's just that around a year ago or a bit loner really, when they gave him the TS diagnosis, I REALLY didn't think that there would be another thing to add to his already growing list of issues. I didn't think that this would happen. Even after his geneticist told me all these years that bilateral choanal atresia never comes alone and is indicative of other issues, I still just thought that his plate was full. That it wouldn't happen.

So, when they told me earlier this week that he had his father's and grandfather's sensorineural hearing loss, I felt terrible. I knew halfway through the test though. When I could hear the tones and he would either hesitate greatly before responding or he'd just simply not react, my gut just sank. Still a serious part of me fully expected to walk out of there and them tell me he was fine. I mean he's just a boy and with all that he already had on his plate...

I've done the mom thing, where you do the denial, you get angry, the crying your eyes out thing and then the research and acceptance thing. All within less than a week this time! :) I'm getting better! Truthfully I'm still somewhere in between the crying my eyes out and the acceptance stage. It still KILLS me that he has to do all this, my little tiny man, and though I can advocate for him, learn all that I need to help him and things that he may need to know, be there when he needs me, but I cannot fully understand how it must feel to be in his body and I cannot take it from him. Though I'd give anything to do so.

So, for now I'm settling for organizing playdates with other hard of hearing children and their families. So that he can see their aids and how they are and he'll maybe get used to the idea of having two aids and he'll see that it doesn't bother those other boys and girls. He'll see that they are normal and do things just as he already does. This is what I did when he was diagnosed with TS, sought out a support group to ensure that he'd see others like himself and know that he was really ok. It is all I can do right now and while everyone is marveling at how much I'm trying to do for him (which irritates me slightly), its not the accolades that I want, it is simply that my son be ok and well adjusted. I know that his self esteem right now is something that I can do something about as he ages, I know it will soon be out of my control but for now, I will do whatever I can do to make sure he can at least start out in a good place.

New medicine

Just when I think things are getting better, DWs tics hit this weird cycle. Where he upswings and downtime are rapid cycling! His tics are so bad in an upswing, that he's physically unable to finish a sentence! And he's picked up 3...yes THREE new tics in two weeks!!! Of course they are all vocal too, which even the best TS mother will tell you can really try a person's patience!

On top of this, though I'm unsure if it's a tic or not, he's taken to smacking his head so incredibly hard when he's really upset or being reprimanded. Everyone's immediate reaction to this is that it's an attention seeking behavior but, you'd have to see it to understand. He does not look at a soul when he does it, he repeats it several times and will even cry while doing it. It's quite painful to him. I've treated this as I do any other tic and paid it no mind but, the fact that he's doing it til he cries, it's very hard.

Talked to the neurologist here, who specializes in TS. He said its time to treat DW's tics....I knew deep down that we'd get to this day but, to have to hear it out loud, my heart broke yet again. So, he'll be started on a medication that has apparently worked well for other TS patients with severe or self harming tics. I'm quite nervous for some reason this time. I just hope it helps and like all of the medicine they give him does not make him too terribly tired.

Hello

So, I guess I should start my first blog by introducing myself. : )

Um, I'm a SAHM of two boys and stepmother to another boy, who resides in the most part with his mother.

My youngest son, now almost 2yrs old, has just recently been given the diagnosis of CAS: Childhood Apraxia of Speech.

My oldest, will be 6 at the end of November, has sensorineural hearing loss (genetic in nature), TS (Tourette Syndrome), ADHD, OCD, SPD (Sensory Processing Disorder), anxiety disorder, etc.

The oldest, DW, is in OT and PT 3 - 4 times a week. JD, the youngest has just finished his first week in ST. He goes 3 times a week. He will need PT and will be getting qualified for it sometime next month. DW sees a psychologist once a week to help with the TS/ADHD rages and OCD issues. He also has a neurologist and developmental behavioral pediatrician that he sees monthly or bi-monthly. He has a geneticist, an ENT (specialist in cranial facial surgeries and issues), a GI doctor and his regular pediatrician. Then you throw in JD's hearing tests every 3 - 6 months and life in our house if usually revolving around therapy or doctor's appointments!!

DW was first diagnosed with SPD at just under 3 years old. OCD was the diagnosis given to him at age 3 as was ADHD. By not quite 4 the tics we'd spent the last two years, chalking up to sensory issues, allergies, etc were undeniably not coming from those issues. The sniffing, blinking, odd breathing noises, constant tugging on his clothes, arm/shoulder jerk, swiping at his nose, etc were no longer mild or in anyway dismissable.

That was our life. Full of meltdowns, medications, various therapies. Then came the dreaded audiology exam. DW's father and grandfather has familial sensorineural hearing loss. So, when as a baby, there was a VERY mild problem in certain tones, it was no surprise. This year's exam though...showed that bilaterally his hearing loss was mild and in some areas, came close to being moderate. It was my choice to do hearing aids or not....when they let me hear how he hears, it was all I needed. He's being fitted for molds next week.

JD has just started his ST therapy a week ago. So, the CAS diagnosis is also new and added to the hearing loss that DW has, it's worrisome. JD's hearing exam was inconclusive in the lower tones, which gives me no comfort.

So, now we add yet another chapter to our lives. Another layer to this crazy cake. It is devastating, it is hard, it is crazy, it is full of tears but, it's priceless, the moments where the light shines in is blinding! It is full of laughter and silliness as you learn to never take a thing to seriously.

I'm just hoping I can hold on tight enough and NOT mess up! :)