The Movie with the boys...and You

I know that this isn't the life you had envisioned when you said "I do" all those years ago.

I know that things were simpler then, and there were no expectations of children or thought of what lie this far ahead. 

I know that if there was ever a moment that you thought about children, ADHD, Tourette Syndrome, clinical OCD and/or even Autism never crossed your mind. 

I know that if it had even crossed your mind, even for the briefest moment, you never thought it would've been so hard, or that it would even be hard times two!

I know all of this, I do. I know because - I live it! This is MY life too, the boys' lives. 

I don't think that you have ever realized this - or that you ever will.

I've tried over the years to talk to you, to have you listen - really listen to us, to me. 

Tonight, you were home. You weren't hiding in another room for two hours watching movies on your phone. I was taking the boys to a sensory friendly movie. So, we invited you. You're always complaining that you don't know what's going on; what activities we do. So, in a last ditch effort to include you, we invited you. . I had the two youngest pack their electronic entertainment, and my oldest pack his myriad of critters, got everything together, with the help of the boys. 

You rushed everyone, yelled, and were generally nasty to everyone. 

We got there, and I wrangled the kids and the management, because once again they'd forgotten to schedule a theater to hold the sensory movie. You fidgeted and grumbled when I asked you to help hold some things. I let the boys go over the cardboard displays of the upcoming movies, like they always do. You started yelling and getting cranky at me for it. You forget that the boys and I do this all the time - alone, without you. This is our routine, and how they keep themselves out of trouble. They like to look at every inch of the display, every character, shadow, etc. Then as we wait in line for water, or pop, or popcorn, we discuss the displays, the upcoming movies, what they would like to see, or which ones they think will be their favorites. 

As we all grabbed our snacks, drinks and whatever else the boys had brought, my purse, etc. You grabbed only your things, as did your oldest son. Our youngest, helped mommy and grabbed as much as he could, grabbed his drink and made his way to the usual top row of seats. Our oldest, grabbed all his things (2 bags of comfort items and electronics) but, could barely make it five feet. So, I grabbed his largest bag, his pillow, my purse, my popcorn, drink and our youngest's popcorn and gloves for his costume he needed to wear, and the flyers I had with me. The two of us standing at the foot of these steep stairs, looking up at the three of you....

Him and myself trying to juggle around things in our hands to make getting to the top easier. Our youngest, seeing the distress and juggling, made his way rapidly down the stairs to help the two of us. While your oldest and yourself, didn't. I had to holler up at him for help and even then, he took his cue from you, glancing your way first and then retorting something back to me. He begrudgingly came but, you...you did not. 

When the movie was over, I asked the boys to get their things together, while I went to the restroom. You of course, weren't happy and made it known. 

As I gather the boys together and spread the load amongst the three of them and myself, you without missing a beat, kept walking. Clearly beating us to the car without a second glance back. 

On the way home, you said nothing. While the boys happily chatted in the back. I asked them if they had fun, which part was their favorite, and so on. You griped at the cars in front of us. I turn and calmly start to ask if you could just end the night on a positive note, and I never get to finish my sentence before you're yelling at another person in front of us and then glaring at me for interrupting your rant. 

I'm tired. I don't want to do this. So, I turn to look out the window for the rest of the ride home, while I listen to their happy chatter in the back, used to our silence, and fighting by now. Upon arriving at home, you leave the boys and I in the dust. You come in the house and disappear. The boys getting their nighttime routine on, getting ready for bed. You're nowhere, like always. Always nowhere to be found. 

You don't understand how we got here, why we're headed down the courtroom aisle. I watched you, have relived every minute in my head, wondering if it's just me. I snuggled with our boys as they drifted off to sleep, and we talked about the day. They never mentioned you one time, one fun thing with you, a funny incident, or even a fond moment. They talk of each other, the movie, their favorite game, how funny mommy is and even how much they want the dog to play something with them. They never mention you....because like always, you're here, but you're never here. 

I'm sorry that we lost you somewhere, not sorry enough to want to stay anymore but, sorry that you've missed out on their smiles, laughter, silliness, their antics, and just them being themselves. Even if it wasn't what you signed up for, and you can't take it. You even miss the best parts too

ADHD

Today I'm going to tackle what to some, is a controversial topic. Today, I'm taking on ADHD head on. Now, I know some of us don't understand why this is controversial and truth be told, it shouldn't be at all but, there are those out there who don't understand it and therefor chalk it up to bad parenting, or kids just being kids, or kids being bad kids even. So, in an attempt to understand this disorder, I'm going to delve into the world of ADHD.

What is ADHD?  ADHD is a neurobiological disorder characterized by developmentally inappropriate impulsivity, inattention and often time hyperactivty. While everyone is spacey at one time or another or has a hard time sitting still, those with ADHD or ADD can't seem to focus on a daily and consistent basis. They not only can't seem to focus on a task or two or ten, they can't seem to sit still for very long. This problem is on a daily basis and effects their daily lives. Most often, children with ADHD also have something called Executive Function Disorder. This is why they have problems, analyzing, planning, organizing, scheduling or not only completing tasks but unable to meet deadlines in life. That said, often children with EFD will often get misdiagnosed with ADD. Which is simply the inattentive type of ADHD without hyperactivity. Though, children with ADHD or ADD may well have both! Most noticeably those with EFD when put on stimulant meds, will not have symptom improvement.

How do you know when a child has ADHD?
Well first, thing you need to know is the difference in the types of ADHD. One being true ADHD and the other being ADD.

ADD kiddos, tend to not pay close attention to things, have difficulty sustaining attention to most anything and often make careless mistakes. They don't seem to listen, struggle with following directions, have struggles organizing, most often will not do anything that requires a sustained mental effort, forget or get distracted easily. For example, my boys' half brother has a classic case of ADD. He will do fine in class but, when asked what his homework is, he could not remember. On his way out of the school for the day, when most kiddos are throwing coats on and running out the door, the teacher would report that he would be zoned out, coat half on, stopped and staring at nothing or the wall. His teacher would report that in class he'd seem to get it but, later at home when it was time for homework, he could not manage to figure out how the teacher, just hours earlier could get A+B=C. This behavior was not sporadic but, a consistent DAILY thing that impacted and still does every area of his life. Most teachers were frustrated by him because for all intents and purposes he was a good kid but, seemingly easily distracted. One year, a teacher wanted to put him in a cubicle in the hallway so that he would be less distracted! Because of things like this, he was gradually soloed out as "that bad kid" and began to loose friends. At 13 yrs old when he comes to visit the boys, if he is asked to do something requiring more than two step directions, he still cannot do it. If asked to clean a room, he can't do it. Instead, he'll stand there staring at the mess. You literally have to tell him to pick up one item at a time, ie. just pick up the Legos, just pick up the transformers, etc. He struggles daily with this and it has cost him friends, respect of his peers and teachers and with one more year of middle school, he's on the verge of flunking out!! All because the school system refused to help or acknowledge his issue, nor do some other people in his life but, that is for a different discussion! ; )

ADHD kiddos are the hyperactive and impulsive ones! They're the ones that will either keep you young or kill you! :P Just teasing! Seriously though, ADHD kiddos cannot seem to sit still...EVER! If they're not getting up and down or running, etc. they can't seem to not fidget. They can't seem to commit to quiet activities, sometimes talk EXCESSIVELY! They often run or climb a lot, never able to connect that if you climb on a bookcase and they've been told to get down because it will fall and they'll get hurt, that the bookcase will fall and they will get hurt! Even after they've fallen from the bookcase and broke an arm, you may catch them climbing to the top shelf in their closet! They seem to run on some kind of motor or caffeine line that you know nothing about. Taking turns and waiting to talk are just not in their manners bank, no matter how many ways you've tried to teach them these basic skills. If the thought of anything crossed their mind, their brain is unable to restrain the action and impulsively they respond, react or do without being able to think it through.

What are the causes of ADHD? 
We don't really know what causes ADHD. It's more prevalent in boys than girls, which as most know, means that there is a genetic component. Which is backed up by families like my boys. In my family, two of my cousins on my mom's side have ADHD, several relatives on my father's side also had ADHD, my little sis has ADHD and growing up, I had ADD - hence the occasional remarks about having the attention span of a gnat! :P The boys older, half brother has ADD as well. So, if you were using a family like my sons', it's quite obvious there has to be a genetic component. There are even some studies that show, like a lot of other things, prematurity can also have something to do with whether a child might have ADHD. To this day though, there is no confirmed real thing that they can nail down as to why some have it and some don't. There are a lot of theories about where it comes from and even contributing risk factors but, no concrete evidence. 

They can say though, that most likely the culprits of ADHD are neurotransmitters. Most likely the chemical neurotransmitter, Dopamine. Dopamine is mostly the chemical in the body responsible for keeping the attention centers of the brain stimulated. So, without a proper level of Dopamine, a person's attention span is compromised. There are also studies on the actual structure of the brain of boys with ADHD. They tend to have more symmetrical brains in shape. With 3 structures in their brains that are smaller than a neurotypical boy of the same ages. They were the prefrontal cortex (believed to be command central of the brain), the caudate nucleus and the globus pallidus, which both help translate those commands from the prefrontal cortex into an action or actions. There is even evidence that shows not only are the structure slightly different but, that the brain uses those areas differently than a neurotypical child. By doing brain scans, they've noticed that ADHD boys have abnormal increases in the frontal lobe and the striatal areas below it. These parts help with voluntary actions! So, if you follow that evidence through, ADHD boys, despite the appearance, are working harder to control their impulses than a neurotypical child is!

How do you treat ADHD? There are a plethora of answers for this. Like many other treatments for anything, what works for one, may not work for another. Depending upon your insurance issues, belief systems and money, the answers vary.
Diets are a natural thing to try and in all honesty work for a lot of people! Things like the Feingold Diet, worked well for my sister and her boys. There is a lot of research out there for this side of symptom/disorder treatment, just Google! If you're going to try this though, may I recommend: The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to Gluten-Free, Casein-Free Diet by Pamela Compart and Dana Laake.

I want to start off saying that don't let the Autism word scare you in any way! Once you start researching, you'll find that Autism and other things like ADHD have a lot in common. Secondly, though I whole heartedly,  recommend this book, I was not asked to review nor have any affiliation with anyone that has anything to do with the writing or printing of the book. So, trust me when I tell you that it is a great, eye opening book for anyone researching food and ANY of your child's neurobiological issues. Once you've given it a healthy once over, you'll never look at food the same way, ever.

If you're not into the diet and food related options for treatments, you can always try some kind of occupational therapy. Yes, I said OT! You'd be surprised to know that occupational therapists can employ a whole host of methods at their fingertips to help ADHD kiddos from "normal" OT practices, to Interactive Metranome, and cranial sacral therapy. Here is where I get to vouch for something that I was not paid to talk about nor asked to. Cranial Sacral sounds all hippy like but, it works and it works well for one of my boys. On the days he sees his OT and she does this for him, he actually takes a nap, holds still, listens, nor is he up and down on the emotional roller coaster. This doesn't seem to effect my other boy though, so remember what works for one kiddo may not work for another. 

Another thing you could consider would be some kind of therapy. The earlier you get in to see someone, the earlier you child can learn behavior that is positive and helpful for themselves. They can do psychotherapy, behavioral therapy - including CBT (Cognitive Behavioral Therapy), social skills training, parent retraining, etc. In my experience though not every counselor, psychologist or therapist is a good fit for a family. Some cling to older mentalities, some to a very hands off approach to dealing with various issues. I once had a therapist tell me to physically hold my son in timeout when he'd earned his way there....that is THE biggest no no for my oldest guy. He never did like to be held much and even though I told the guy that holding him, results in the "fight of flight" reaction, he still recommended that I try this. Needless to say, I never went back to him after that! Don't be afraid to try different professionals until you find one that fits! You have to have a great team, that communicates well to make this work. 

Lastly, and as a last resort, there is always medication. I will not say with or without medication is best because, as I've said a hundred times, not every child is the same. Some are further down the rabbit hole than others and some are more defiant than others. It's a hit a miss kind of thing. I will say that medication should be broached as a last resort though. It's too easy to take the smooth road, then to take the bull by the horns because going it without and even sometimes with meds, is NOT easy. If you are going to do meds though, here's my two cents:

• I recommend asking and researching which ones are the safest first. With the new drugs out there being pushed to docs they'll most likely throw you on the newest one or two that they get but, sadly enough, Riddalin is still the safest starting point in a lot of cases - though not always. 
• Keep an eye on side effects too. One medication worked well for a lot of kiddos, mine was no exception but, like his cousin, that medication caused stomach pain in both boys. 
• If you're in it for the quick fix, think again. While some medications seem to produce a noticeable result for some families within a day or two, sometimes it takes up to 2 whole weeks for the medications to build up enough to be noticeable. 
• Keep an eye on mood swings. One very popular medication right now seems to cause this issue in a lot of kiddos, my nephews and my son again are no exception. One nephew was removed from it, the other can tolerate it in small doses.
• If a doc recommends medication, you have every right to say, "let me sleep on it" or flat out no! Don't let them run you over. Remember, this is your child, you are the parent and the pediatrician works FOR you!

The advice I give you here comes from experiences and as a mother who does do medications for one child and is able to opt for more natural treatments for the other. Honestly, after all these years and experiences with medications, if I could go for fully natural remedies for my oldest son, I would in a heartbeat. You'll understand in a later Tuesday post why I had to take that route. Just keep in mind during your research or dealings with various docs, that you have to do what is right for your family. If you opt for natural treatments, don't let your family or friends make you feel like you made the wrong choice. If you opted for meds, don't let anyone else make you feel as if you took the easy way out. For most of us, it was not an easy choice by any means. I cried for days when I found no other way out for my son. 

That being said, for those that don't know, medication is not the easy way out. If you do take more than one medication, it is tricky to find the right balance for your child. Not to mention too that as they age so does their body chemistry and so the perfect balance no longer works or they build up a tolerance to the medication....it is a merry-go-round for sure. AND the mother that chose to medicate, also still chooses a way to help treat her child, be it OT, therapy and/or food! So, here again, NOT the easy way out! My oldest does take medications, goes to OT, has therapy and has a diet that I found worked wonders for him. With all this in place, he went from 7 medications down to 4! Which is still a lot of medications and again, I'll explain why in another post but, suffice to say, he does not have just ADHD. The point though that all of these ways to treat ADHD have been employed and in conjunction with one another have worked well for him. Again, while my youngest son with just diet, and so far occupational therapy has done well! So, no matter what avenue you choose or if you're a split family like ours, remember to keep your options open, keep an open mind to other families who've chosen to do things differently and don't be afraid to challenge your doc if need be. They are not the be all end all on the subject of YOUR CHILD! 

If you're just reading this to learn, I say again, quit giving that kid and his mom the stink eye in the grocery store! Sometimes a fit is just a fit and other times, it's what you don't see under the layers that is real problem, not bad parenting or bad children. So, stink eyes off and learn to be a bit more open minded! :) 

Thanks for joining me for another Not Your Typical Child Tuesday! Now back to your regularly scheduled program....

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.

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! :)