Autism...Hear Me Roar!

It's been a heck of a month. It really has. As September quietly, beautifully slips away today and October sneaks up, I can't believe that another year has gone by. I can't believe that I've lived through this last month. I can't believe all the changes that have happened in just 4 short weeks.

My youngest, who is on the spectrum, is finally in speech therapy again, after being on a wait list for 6 months. I was told, it will be intensive and require a lot of "drilling" at home. Sounds fun, doesn't it? My oldest, who has Tourette Syndrome, Intermittent Explosive Behavior Disorder, ADHD, ODD, OCD, etc. is now being tested for ASD as well tomorrow. 

My youngest who despite his diagnosis, was always pretty easy to handle, has become increasingly agitated where his communication gap is concerned. My oldest, has melted down repeatedly every day to epic proportions. And while I know the word "epic" is used so passively now, I assure you this is the only world that does what happened with him justice. In one day, I carried him out of 3 different grocery stores as onlookers stared, gave disapproving looks, and pulled their children away from - even though they were easily several hundred feet away. I suppose to some degree it was my fault, after the 1st meltdown I should've packed it in, but I had to get that stuff done that day.

My youngest, was put on medication to help his attention, which is suppose to help him with his communication in the long run. And while I tried for two years to NOT put him on meds, after going to the bathroom for seriously only 60 seconds, I came out to find him dang near on top of my fridge. Mind you, my fridge stands alone in my kitchen, no counters are anyway near it. So, I agreed to give him a small dose of medication. It's not a lot and he's still all over the place, but at least now I can go to the bathroom without worrying he's going to set the house on fire or get himself killed!

My oldest, I fought for 3 years to keep off of a certain medication. After 6 months of violent meltdowns, and most of them in public, I finally gave in and tried him on it. He's been on it all of 2 weeks now and while he now has minor meltdowns 2 - 3 times a week, they're manageable. Granted I had to chase him down at my mother's apartment when he bolted out the door because I was going to wash his dirty face, but that was mild. Though, I'm sure her neighbors loved watching me get my son in the grass, wrap my legs around his, bear hug him with one hand and wash his face with the other! I suppose though, at a retirement village, that would be exciting entertainment!

I started taking a chance as well. I began to not only take part and end up heading my state's Dyspraxia Foundation chapter, I decided to start taking part in the local Autism Society. I was worried, because my oldest son is verbal, he's ahead for his age actually. My youngest son has great expressive language, for the most part and he struggles with the receptive language, but he's verbal as well. So, I thought that because neither boy was so far down on the spectrum, that we'd not be welcomed or fit in anywhere. 

So, I dipped a baby toe in. I began participating in their online support group for moms. Then I signed my oldest son up for soccer. A special needs soccer team, filled with every kind of special needs, not just Autism. Which has opened so many doors for the boys and for me. 

I've always been the kind of mom who gives herself to everything she does and most especially her children. Which those of you out there who actually read this know, that is not the smartest thing to do really. It's like the flight attendant who tells the parents to put the mask over their own face before their child's. I never agreed with that before, but now I can see why and most importantly, I agree!

As I've learned more and volunteered more, put ourselves out there more and connected with other mothers close to us, I've realized how much we all have in common and it's amazingly freeing. I was speaking to one of the heads of the local Autism Society and I was suddenly saddened to hear her describe the reason many mothers or families didn't participate in many of the activities. It's the same reason I never participated prior to now...I felt that because my kids weren't verbal we'd not fit in, so to speak. She tells me that the moms of kids who are non-verbal feel the same, that because there are so many of us with verbal kids they feel like that don't fit either. It breaks my heart to hear this. I wish so many more of us would get out there, share our stories and whether or not we're from verbal or non-verbal families, realize that in the grand scheme of things, we're all one big family! We all need to stand up together and educate, push for better legislation, better insurance coverage, better IEPs. We need to stand up and ROAR! Not be sitting on our own side of the respective fences and be afraid to put ourselves out there. We all know the behaviors, we all know that no child is the same and it's truly sad that we're not willing to come forward more and be apart of something special. If you know someone who is afraid to come to a local autism event because either they're child(ren), are verbal or because they're non verbal, please encourage them to just get up and out and participate! I can't tell you how essential our mental health is as the caregivers to our kiddos. Please take a minute and support yourself, or if you are the caregiver reading this, please stop and do something for yourself today. Most importantly, connect with other people in your local community, you need that support. Lets all roar together!

I forgot...

There are times that I honestly don't think about having special needs children. I don't think about how many appointments we have during the week, or what skills we need to work on during the day, or even give a second thought to avoiding family functions, etc.. It's just our life and it's no longer a truly big deal.

Then you get days like today, where after one exhausting episode, you feel the weight of every little slight, every misstep and the whole ball of wax feels like the weight of the world is on your shoulders. You realize everything that you've done wrong and pray for some respite from the chaos.

It's not often I feel this way. Most of the time I have two mottoes that I live by and they keep me in check. One is never sweat the small stuff, remembering of course that unless it's life threatening, then it's all small stuff. Two is remember, it could ALWAYS be worse. Those two phrases have kept me off of the pity pot for the most part and kept my head on straight.

While it's disheartening to know that your child may not be the quarterback of his football team, nor will he win "most popular" at his school, my mottoes have kept me booking and onward to excepting both of their diagnosis and all that they entailed without looking back.

Then you get days like today...

Understanding a Dyspraxic, a child diagnosed with generalized anxiety disorder, OCD, ADHD, SPD, ODD and labeled with "autistic tendencies" is pretty simple to me, but even I get complacent when things are going well and I forget. Today, I forgot. It apparently was such a grievous mistake that now the entire neighborhood knows I forgot!

My husband had the day off and I decided I needed a break, a little me time if you will. We decided that he would take the boys to their OT and PT appointments today and I would relax at home on my own. I forgot to tell my oldest of the change in plans though...

It was a terrible scene and my husband finally got to witness one of his meltdowns in person. He will never complain about what he considered a "meltdown" again. lol It was some horrible scene you'd expect to see if someone was abducting your child! Complete with blood curdling screams, a child grasping at the door frames as he was carried to the car to go to his bi-weekly appointment. He was clawing at the walls, grasping onto me as if he was never going to see me again, all while screaming like someone was going to murder him. It was awful really.

The description, while I'm sure is horrifying to some, isn't even doing what happened justice! Needless to say after 20 minutes of prying him off of doorframes and myself more than once, he'd gotten my youngest so worked up, he was hysterical and scared and just wanted mommy as well.

Knowing that I could not fully explain to my youngest who still struggles with receptive language skills, what was going on and that he and his brother were really ok, my heart broke. I gave in and went. I KNOW I should've stayed home, the ABA and the psychologist would have given me a stern look for caving in and I know it was wrong, but looking at my little one's face, terrified out of his mind, I couldn't say no.

Afterwards, I was so exhausted. I am so exhausted. I'm upset with myself too. My neighbors who've been amazing through the years with the amount of screaming that I know they hear from my house, were even startled today. They know my children are special needs, but today even a few of them came out to see what was going on.

For those of you with neurotypical kiddos, imagine if you saw a mother and husband carrying their 8 yr old child out to the car, kicking, screaming for mommy, as if he was being abducted! I was painfully aware of how it must've looked, even to those who knew my children. It's times like this, I want to crawl back into my room and not come out for a day. Partly out of embarrassment, and yes, even after all these years, I still struggle with accepting those people who look down their noses and not understanding. The other part of me that wants to go in my room is exhausted - mentally and physically. I can't tell you what kind of a toll this can take on a person and it doesn't help that as soon as it's over, all I can think is that he's only 8, how many more years of this can I keep doing? How often is he going to keep doing this? Which we all know better than to do. lol Today though, I did all of those things and it got the better of me.

I've sat in my room now, one kiddo in bed and the other snuggled up under my left arm, passed out for two hours now thinking about my actions and emotions. I've come to realize three things. One, tomorrow is another, brand new, bright, fresh and cheery day. Two, don't sweat the small stuff - this is small stuff and three, it could've been much worse. Fingers crossed tomorrow is another day.

Life since Dyspraxia Diagnosis

I haven't written in so long. Life is so many kinds of crazy now, truly it is. We're starting homeschool with my oldest in less than a week now and I've had to relearn, revamp and reapply every thing I've taught him thus far since learning FINALLY of his correct diagnosis, before the end of the last school year. He was diagnosed with Developmental Dyspraxia.

Then there is learning how to circumnavigate my youngest's form of autism (ASD). He's very verbal, though his receptive language skills are a bit off. He often will say the opposite of what he means, gets confused very easily in a conversation and frustrated when he can't convey what he means. These are just a few of his issues with communication. Don't include the sensory issues, sensory sessions at home, with his OT and even his PT has resorted to doing OT in her session with him, he's in that much of a need for it. I could go on, but you get the gist - CRAZY CRAZY time at my house!

My oldest is finally making progress though! He can tie his shoe now, well he can mostly tie his shoe now. Which is fantastic! So what if I have to retie it sometimes, most of the time or if he can only do it once or twice a day, the point is, he can do it now!!!

He can write pretty well now too. He might be a kindergarten level now, but at least it's legible. Who cares if it's written as big as your head, at least you can read it! Because of being able to kind of write the alphabet better, he has taken to reading a bit more on his own and attempting to write things out by sounding them out, rather than continually asking me how to do it. Which is HUGE! We're working on pencil grip now, in the hopes that this will be kind of the last key in getting him where he needs to be.

Riding a bike....this is a work in progress for sure. He needs to learn balance and them time his right and left legs/feet to go at the same time...it could take a while. Seriously though, he has started to run a bit better now too. Not all squatty and arms out in a defensive position. He can almost pass for normal running though.

Once he's a bit farther ahead, we work on his ASL, which he's avoided doing because obviously, if you haven't guessed it yet, Dyspraxia affects many, many things, including motor skills. So, sign language has been a bit tricky for him, but we finally have hope that he might be able to sign without frustration or much issue one day. Makes both him and myself feel much better.

Now, we work on memory skills...I've no idea how we're going to do this, but I'm game. Since getting the correct diagnosis, he's come so very far and I'm so very proud of him. I can't believe it's only been a few short months of this and he's made such huge strides. It's been so inspiring to say the least.

I Gonna Wear Hearing Aids...

This is what my youngest declared happily to his new audiologist last week. To which she actually said, "You just might buddy."

His daddy, his beloved Papa and older brother wear them as does his half sister, who he's met a few times. She's much older and has her own life so she doesn't get to visit too often. So, aside from myself he is the only one without aids. So, I can see why he'd say it.

There is nothing wrong with that. Absolutely nothing!

He'd just finished his hearing eval though and the news was mixed to say the least. After being told for several years that his hearing was fine, I was just told that it was not. I wasn't upset at this though. I mean I was, obviously I was, how do people get to decide that a bottom of the "normal" range is NORMAL?! And then tell you, your child's hearing is fine.

I find out that his tympanograms show middle ear dysfunction of some kind, especially in one ear. That his last test and current test show a very mild hearing loss until you get to the higher frequencies, where he hears just fine. It sits directly on the border of where the "normal" hearing and "mild loss" line is. So, I guess that it's up for interpretation, but still in a family with a deaf history, don't you think that this was worth mentioning?!

I've been after him for months to pay attention, turn down the TV, turning my back when I talk to him, even walking away when I'm speaking, etc. Now, how awful do I feel?! The audiologist is concerned enough at where it sits to have us come back in another 4 weeks to recheck even.

So, am I upset? HECK YES! Am I upset that he might be aided? No.

Yes, that's right, no I am not upset at this. Is it wrong that part of me is hopeful that he gets his aids? I'm sure as a hearing parent some would say so. I mean we want our children to hear our voices, to hear theirs, right? Being really the only hearing person in this Deaf house though, I realize that it is just as important to HoH/Deaf people to want to have the same camaraderie. The only hearing boy in the house wants to be like his Papa, his daddy and his brother, what's wrong with that? Nothing.

My only concern is that all indications are that there is something in the middle ear not moving and that it might require more tests and possible surgery to fix. Though his loss is on both ears, indications are that one has this middle ear problem but, we won't know for another month!

It's always the waiting that kills me though. I hate waiting. I've never been good at it, you could ask anyone that knows me and while these boys have taught me some bit of patience, where it concerns them, I feel like that kid in the candy store who is told not to touch anything...I'm completely hopeless! lol

A little girl named Mary

It occurs to me that I haven't written anything in a long time.

Life gets in the way sometimes. All the expected things and all the completely unexpected things as well.

Today I need to get some things off of my chest. So many people I know are pregnant, which is great and exciting and a truly wonderful thing. Yet, I feel a little sad by it and frustrated. For many reasons really, not just one thing.

Not because I've been trying to have more kiddos. I physically can't...well, I could but, risk dying of hemorrhaging on the table rise exponentially each kiddo I have. Yes, that means I literally almost died having my first son. And while they were ready for the second time, I was told the scar tissue, etc. was extensive and the risk of bleeding out again would be greater. So, despite the fact that I always imagined 4+ kiddos, I opted to have my tubes tied. There will be no more trying for any new addition for me. While this fills me with a mix of emotions, I've slowly come to terms with it over the years.

So, why am I sad and frustrated?

It's the things that no one talks about when you're pregnant. The things, as a pregnant mother we don't want to talk about or think about. We want the baby born on term, with ten fingers and toes. Babies who can eat formula or breast milk, who doesn't need any surgeries to survive and will never know what a NICU is. We want that and we all have a right to that, to hope for  that.

I know I was that way and I know that one little girl, Mary, was her name, changed my whole life and I was never more grateful that she did too.

I was somewhere between 6 - 8 months pregnant with my oldest son when I met her. I hadn't yet been diagnosed with gestational diabetes, I was rather large for my gestation but, still didn't yet know that there was anything wrong. I was blissfully ignorant and my baby was going to be the prom queen or the football star...

I went to my husband's relative's funeral and there she was. I saw Mary instantly across the parlor. Long dark hair, cut in a straight line. She had bangs too and glasses and smiled at everyone as they passed her. She stuck close to her mother, was probably the most well behaved child I'd even seen really. I did my best to avoid her though just the same. Which was hard because I couldn't stop glancing at her from across the way and when she spied my gigantic belly, her eyes got wide and gleamed with immediate fascination. I made excuses to leave the group Mary and her mother were headed towards several times. Up until I finally could avoid them no longer without it being obvious.

She stood there, looking at my belly, not really saying anything for a long time. Just smiling at me, as if I was a Disney Princess! I tried my best not to look at her though.Until she finally asked to touch my tummy even before she did so, which to be  honest was more polite than most adults really. She asked me if it was a boy or a girl, again very politely. At one point as everyone sat on the chaise lounges or chairs, I sat on the floor as it was much easier to get up and down for me...weird I know but, trust me, it was easier!

Mary, who was still glowing at me with her beautiful smile, asked if she could sit next to me. Which again, more polite than most children. She asked me several times if she could touch my tummy and each time I let her, she began to talk to me here and there. Always polite and always with a cute smile and gleaming delight in her eyes.

Every fear I'd secretly harbored, every worry I'd ever had about the well being of my child, I'd come face to face with in those moments. When I left there, I'd made up my mind, no matter what, it'd all be ok. Mary's innocent heart, her eternal curiosity, her bright eyes and beautiful smile, opened my heart to everything that day. I tear up even now, just thinking of her and that day. She forever changed my world that day.

So weeks later when I found out that something was physically wrong with my son, I thought of Mary and knew it would be ok. Months later when they told me that my son would most likely be cognitively delayed or physically handicapped in some way, I thought of Mary and KNEW it would be ok.

Years later, when I became pregnant again, all the "What ifs" raced through my mind but, I thought of Mary and knew that we'd be alright. And when my oldest son began to feel comfortable socializing, a "friend" of mine at the time expressed her concern that the children of choice for him were the ones with Down Syndrome and only those children. I immediately thought of Mary and told this woman, "we could only be so lucky".

More on Tourette Syndrome

If you couldn't guess by last weeks post, I am going to talk about Tourette Syndrome today. If you think you know all about it and it's not in your life, then you don't know a thing! For example, the stereotypical misconception of TS is that you have coprolalia (yelling curse words) is actually rare in people with TS and that the percentage of people with coprolalia is something like LESS than 10%?! Did you also know that even though when TV shows or news shows mention TS, we typically think of adults but, that a majority of people with TS are children?!

Tourette Syndrome affects something between 1 and 10 students per 1000. Which sounds like pretty good odds your child or family won't have it but, since my son has been diagnosed, I actually see a lot of people that I can honestly say would fit the diagnostic criteria for having TS and they don't know they have it! TS can be so mild that a varying amount of adults have had it a majority of their life and not know it nor have their 'tics' get fully noticed by family or the public or they get misdiagnosed even. In fact, most females with TS will often get diagnosed with OCD!

TS affects boys 3x more often than girls and is prevalent in the Caucasian population versus any other. There are some genetic components as well in developing TS. It has been known to run in families but, a lot of the time, it appears for no reason. There are certain familial traits that often seem to be present in families though that many a researcher finds interesting when TS finally manifests. For example, OCD is hugely prevalent in families of a child with TS. Though again, it's not always that way but, a large enough number of things like this seem to happen and it has caught researchers' attention. Another main focus is the dopamine and serotonin levels and receptors in the brain. The theories go that either the receptors are hypersensitive or that the person with TS over or under produces those chemicals in the brain. They have even found that mutations involving the SLITRK1 gene have been identified in a small number of people with Tourette syndrome. SLITRK is responsible for providing instructions for making a protein that is active in the brain. They believe that the SLITRK1 protein might plays a role in the development of nerve cells, including the growth of specialized extensions (axons and dendrites) that allow each nerve cell to communicate with nearby cells. It is unclear how mutations in the SLITRK1 gene can lead to this disorder.

So, what do we take from this? TS is a neurobiological disorder that usually presents with tics. Tics being involuntary, rapid, repetitive movements or vocal outburts. Tics will wax and wane but, be present for at least one year. Tics often change and go away or change and reappear. For example, they may have a blinking tic that stays with them and a sniffing tic that changes to a humming, etc. Some tics reappear intermittently and others may only appear once. There is no rhyme or reason for it. Tics vary from person to person in severity and duration. Some kids may have days, weeks or months with no outright noticeable tics, while others will never have a tic free day. Some kiddos may have severe enough TS on an upswing that they cannot walk, talk, or eat normal! For some other kiddos that severity of tics may be an everyday thing!

Children with TS typically have a normal range of IQs, meaning just like the normal nuero-typical children, they have a normal intelligence and some have high IQs. They are in every way as normal as your son, your daughter or you neighbor's children. They may have other issues though, called comorbid disorders, like ADHD, OCD, Sensory Processing Disorder, ODD, Asperger's, etc. It is these accompanying disorders that often times gives the child some trouble, be it with school, attention, behavior, etc. To make matters worse, children and adults with TS often times have episodes we as parents typically call rages. These are never pleasant for anyone involved. They often times on an upswing or if their TS is severe, are exhausted by their constant body motion and it's painful. As a parent, there is nothing more painful than to watch on in helplessness.

Meet my son and help raise awareness for Tourette Syndrome!

Probably THE most personal one for me to share yet. Mainly because of the HUGE misconceptions associated with this disorder and the obstacles that my son will have to overcome. It is the one thing that still feels very raw on a bad day, as many a mother of a child with TS will agree. Today begins a month long awareness campaign for Tourette Syndrome Awareness in the U.S. So today, we begin to tackle Tourette Syndrome.

I can't really talk about Tourette Syndrome without introducing you to one of the loves of my life, my son DW. So, instead of giving you the stone cold facts and statistics, I will show you the personal side to TS in my life today. Please take a moment and get to know my son.

Here's his little brother's video he helped make dedicated to his big brother: 

                                     

Before you judge, before you joke, make sure you know what you're talking about first. These are just two of the faces affected by TS. There are millions more faces just like this affected by it. Take some time this month to get to know more about TS and destroy the myths and stigma that surrounds it.

Thanks for joining me again for another Not Your Typical Child Tuesday!