What Autism Means to Me #autismawareness

April is Autism Awareness month. A time to celebrate, educate and learn to have more acceptance for those children and adults living each day in a world I know little about how to relate to. It’s difficult being a parent, I am sure, to an autistic child. From what I’ve learned thus far, it’s a broad spectrum and no two autistic people are alike.

autism awareness month

If you are an every day reader of my blog, you may have followed along my life in regards to my now seven year old son, Aj. If not, you can catch up, but there’s a lot there listed under Mood Disorder, but most recently Autism categories here on my site. Basically, about a week or so ago, my son Aj was diagnosed with Autism Spectrum – High Functioning. This diagnosis didn’t come to a surprise because for the past two and a half months I have observed my son, taken notes from his teachers at school and witnessed him in his day-to-day life. I already knew my child seemed to be showing more and more of the spectrum as time went on.

While Aj has undergone multiple diagnosis’s, we firmly feel he is on the spectrum. For years Aj has exhibited some autistic tendencies, as his counselor has called them, but never enough to get anyone to say “yes he is autistic”, while I didn’t need a diagnosis as a parent for I am constantly observing my children and adapting in ways to raise them, the outside world usually needs a diagnosis to work with. So here I sit and write about what autism is for me during this month to raise awareness of Autism.

When I called family to tell them about Aj’s diagnosis, they of course wanted to know the question many ask, “What does that mean?”

My simple explanation for what autism means for myself, my family and my son is nothing. Really all that autism means for us is that we have learned to have more acceptance and patience. You see, Aj really seems to think like a computer or a robot so-to-speak. Aj is highly intelligent, has amazing grade levels at school, but in a social environment he may show signs of awkwardness or uneasiness. Aj cannot pick up on all social cues like we can, Aj cannot handle sarcasm or jokes like we can, Aj may not always make eye contact but I have noticed he makes eye contact with me. Aj also has flapping of the arms with happiness or excitement as well as rocking that has appeared in the past couple of months when nervous or trying to cope with a scenario he may not be comfortable with.

Other questions that come into play for me as a parent are how I will ensure he is receiving the supports he needs at school for the social aspect of his autism, because it’s evident his grades are fine at this point, but as he gets older the social aspect of school could take a toll on him.

I am currently awaiting meetings with the school to work on a 504 or an IEP, so far it appears they are going to work with me on a 504, I am okay with that as a first step unless I am educated otherwise.

Autism … in my eyes …

For me, autism is simply another way of viewing life, being that I have always been an open minded person and parent, it’s easy for me to observe Aj and learn how he works, how he thinks, and what is going on as-he-sees-it. As my child has grown, and without medications blurring who he is, I have noticed that really Autism for me isn’t a disability per say; Aj has grown tremendously, he fixates on certain things that he loves doing but how is that harmful to him? Aj loves technology and he has also started to show a love of interacting with his family and his best friend who comes for play dates.

For me, autism is honestly more simple, at least at the high functioning state, than your average person I work with. For Aj his world is black and white; you do what you say, you mean what you say and life is fine. Sadly, that does cause a ruckus from time to time, because as a human we know there are sometimes where sarcasm comes into play or maybe we say “not right now” far too often, instead of no. It seems in society we tend to be non-committal and Aj requires a committed reply and answer at all times. Aj thrives on a structured environment, he goes by the clock with any electronic time, play time, diner time, getting ready for appointment times, etc.

Autism hasn’t changed our lives in a bad way, it’s opened our mind, heart and soul to love deeper, more unconditionally and has helped us have a better bond than most families I witness. For me, Autism simply means love. The love Aj has for those who are close to him and the love we have for him is stronger and so unconditional that it honestly warms my heart.

My advice to those who don’t know enough about Autism, is to ask questions without judgement. My advice to those who do know about Autism and may be told their child will never lead a life like “every other person”, keep hope and Faith, work hard because honestly no matter what disability your child is diagnosed with, the hope, love and Faith from their parents can make a world of difference in their future!

And so I remind you this month, it’s okay to ask questions about Autism, but it is not okay to judge an autistic child by the book, they are so much deeper than what you see on the outside, just like every other person in this world!

Bipolar and ADHD can be Confused with the Other

As most of you who read my blog are aware of, my middle child has had some struggles along the way of his life. Having been born completely irritable all of the time, we knew that something was just not right with him. This is not to say that he was just different than the other child I had, but that something was unique to him. The idea that something was unique to my middle child soon became more obvious as we had another son and he too was a happy baby like my first born and only daughter.

I admit, as parents we did things we may have not done had our son not been so irritable, aggressive and constantly being angry. We enabled some behavior & walked on egg shells with him constantly. I recall us always saying that Aj had one emotion; anger. Can you imagine, as a parent, raising a child that knows only anger? Especially when their mother is a happy, hyper, silly kind of person? It was difficult and to this day I still struggle with wondering why Aj was born the way he was. The thing is though, we finally found what appears to be an answer; bipolar diagnosis and rispderdal for medication!

Bipolar and ADHD are so closely related that they can often go diagnosed incorrectly; being that Aj was first diagnosed ADHD but had major mood fluctuations and all of the symptoms I saw in my bipolar sister growing up, I kept fighting to ensure we had him on the correct medication and had the right diagnosis. Now am I 100% sure that he is bipolar? Yes. I. am. That is not to say that I sure as heck hope that diagnosis is proved to be wrong as Aj grows older, but at this moment, yes I can honestly say after watching my almost six year old grow up that he is indeed bipolar.

I hated having to realize that my son did indeed need medication to get to have any chance at a “real” life of his own. Being bipolar or having any mood disorder can truly affect ones way of creating a bond with other people, loving and laughing at life. I laugh at life daily, I could not imagine having a chemical imbalance creating the possibility of laughing at life seem impossible. This is what our son was faced with, the fact that he was just simply angry without any trauma or situations that would make sense for him to be angry about.

Aj has always been a loved child and has always been sort of the one who stands alone in the family, do not get me wrong, Risperdal has not changed Aj’s unique personality but it has kept his mood fluctuations at bay. No longer does the family have to walk on egg shells with Aj, no longer can he not handle and get over the fact that I said no to computer game time. Aj is a real kid with normal things that upset him. No longer do I have a child who may get volcanically volatile over silly reasons. I have a child who responds normally to the word no and is now accepting that we are teaching him how to be a kid all over again.

At age five, this is fine. We can work hard to get rid of that enabling and walking on egg shells to live with a child who erupts like a volcano. Now comes the real job, unlearning those behaviors that were tolerated simply because it was better for the family at the time. We would have to restrain Aj for hours in order to even get his rage to end, and even then it wasn’t 100% over with. Aj never slept through the night. Aj struggled with forming solid bonds with his older sister and younger brother. In essence we have been “broken” as a family in some ways, but always had the hope and the fight to keep moving forward so that Aj could be one with us again, one who doesn’t have to live angry all of the time.

I am hopeful that this bipolar diagnosis is correct, that the medication is correct now and that we can all move forward in teaching Aj how to live life fully without his volcanic eruptions of violence! I am happy to see my son, for I feel it’s the first time I have seen my son since the day he was born, he is no longer hateful towards everyone and everything. I am proud of us for sticking together the best we could with a tough situation at hand and I am proud to see Aj is forming bonds with his older sister and younger brother in ways they never imagined would be possible!

Risperdal Is Working For My Five Year Old

I have told the story of my Aj forever now, it’s been three years since we started the fight to find out what was up with him. Our first concern was the lack of sleep, never having slept through the night & always having been an irritable baby {not to be confused with colic, he was just irritable}, we knew lack of sleep meant no possible way to tell if his moods were based on insufficient sleep or a real genetic mood disorder issue.

Aj smiling while dancing with his siblings

Then the whole sleep issue was resolved. Intuniv came on board for ADHD, and well I recently wrote a post about how that went, not so good {link to that intuniv blog post}.  We are now seeing a pediatric psychiatrist and they diagnosed him bipolar, although I believe the diagnosis is something they are not 100% stating out loud, they say he exhibits a majority of the signs of a bipolar child.  I know what bipolar is, a chemical imbalance in your brain, I know what it looks like in a child, my sister is bipolar having not been diagnosed until her early 20′s.

Here is what I know about bipolar:

  • It is a chemical imbalance in the brain; meaning it’s not learned, it’s not encouraged and it certainly needs medication as there isn’t a surgery that can fix the chemical imbalance in your brain.
  • It can cause suicidal thoughts and actions.
  • It can cause the adult or child to do major harm to themselves {cutting, burning their body, etc}.
  • It can cause the adult or child to withdraw from society not able to have natural bonding relationships.
  • It can create a bitter household with stress for any other children or adults in the home, as well as the adult or child with bipolar because they don’t wish to be this way.
  • It is not something a person can control without proper medication and/or therapy.

AJ smiling for a picture

All in all, no matter who wants to say that bipolar is just some condition that a doctor thought up to label kids and adults in order to feed medication to us, you can wipe that thought out of your brain! I lived with a sister, four years younger than me, I have watched all of the suffering she went through, our relationship was extremely difficult and she dealt with a lot of struggles within herself not sure what was “wrong” with her. There is a lot to the story of my sister, but I will not get into all of that, what’s important now is that she grew up with bipolar and I grew up with her therefore we know all too well not having AJ diagnosed with it at the earliest of possible age that he would suffer horribly in life and have a difficult time growing the way a child should be able to grow emotionally.

Thankfully Rispderdal was started four weeks ago and it IS working. Aj is smiling, he has steady moods, the irritability and the anger outbursts are gone. He is loving all of us, he is interacting with the family. Aj still doesn’t like all of the things the rest of us like; such as long walks or being outside for too long, but I will take him having his own unique likes and dislikes over the mood fluctuations. You can not medicate a child because you want him to be more like you, however, you can medicate a child if their mood fluctuations or behavior {not learned behavior} is keeping them from leading a healthy lifestyle both at home and in school.

AJ Having fun in Kiddie Pool with his brother

I am happy to have my son back, so to speak, he was always here but he was underneath the bipolar and his eyes were never really appearing “here”, now when I look at Aj I see life behind his eyes, I see a sparkle and I am so happy that after three long years of testing and fighting with various people, we finally have Aj back to having a real chance at a good life with this bipolar diagnosis and bipolar medication, Risperdal.

I say to you, if you are the parent of a child who you know may have something not quite right going on that you continue the battle, educate yourself, get a doctor you can speak with & trust. Keep fighting for what you feel is right for your child, no matter what the situation is. Just fight for your kids! Life is too short and we are parents for a reason; to assist in allowing our children to grow up happy and healthy so they can lead great adult lives!

Switching from Intuniv to Risperdal

My son has tried all sorts of medications, the first process with our now five year old son was at age 2 to start figuring out what would assist him in sleeping. Never having slept through the night and being up for hours on end unable to slow his brain down to sleep, we were reluctant to take on any pediatric diagnosis without first getting him ample sleep. Any human being would be aggressive, irritable and slightly off with lack of sleep for days, but this child had gone all of his life with lack of sleep.

The first step was to try melatonin, a natural remedy for sleep problems but it only worked short term. It seems my five year old son, Aj, is able to metabolize things quicker than your average child.  After melatonin was unable to work for sleep, we were suggested to try Benedryl, well that worked for a few days but never worked consistently and of course this wasn’t something we wanted our son to live on for sleep.  The last medication used to assist in sleep was clonidine, this is an adult hyper tension medication that he took at a dose of .5 mg at first and eventually increased it a couple of times through out the years he was on it. Clonidine did not work consistently either, there was something about Aj that the pediatrician was missing and so we went off to see a counselor.

After seeing counselor & having the counselor work with us on parenting techniques to ensure that Aj’s behavior was not a learned behavior through lack in parenting, the counselor had advised that Aj may indeed be ADHD, although we are leaning towards bipolar, so let’s try something called intuniv. Aj was placed on intuniv in June 2011 at 2mg. Just recently the pediatric psychiatrist increased the intuniv to 3mg and our little boy went from being somewhat controllable to being irritable, aggressive and just flat out angry all of the time. Aj started seeing things that were not there, he started being consistently irritable and any small thing would set him off.

I am not talking about a boy who is getting set off by instigation’s from siblings or the word no or not getting whatever it is he wants, Aj was flat out irritable and explosive over almost anything, even an odd look would set him off from time to time.  We knew increasing the intuniv was a horrible idea and could not wait for the remaining 3 weeks to pass so we could see the pediatric psychiatrist again. Thankfully we went into the pyschatrist’s office and I lost my cool.

Usually a strong woman, I do break down in tears, especially when I have known for many years that my son quite possibly may be bipolar. Supposedly bipolar is a less common thing but it runs so heavy in my family and I know many diagnosed with it whom I am not related to that to believe it’s a rare condition just didn’t make sense to me.  Thankfully my tears, my pleading to help my son worked!

Aj shows enough signs of children bipolar, a diagnosis not fully certain yet for not many children are diagnosed with bipolar at such a young age, but the psychiatrist is sure enough to try out a mood stabilizer medication called Risperdal. So we worked all last week on weaning Aj off of intuniv, which was close to a nightmare. Aj has been so extremely hyper that we can not contain him, no longer possible to ride in the car my week had been pretty challenging.

I feel so bad for Aj, but at the same time weaning him off of intuniv made us see that the intuniv was truly the wrong medication for him. We have had to deal with Aj’s energy level increased and him not being able to sleep until close to 12am each night, but during the daytime hours he has found his sense of humor again and you can joke with him. I even snuck a couple of hugs from him without being hit or pushed away. Although the week was trying, the positives were amazing. He clearly has bipolar or some condition that doesn’t allow him to lead a life that would be fulfilling at this time without medication but for now, I am happy that he is being taken off of the medication that made him lose the sense of humor and ability to love his family, although Aj had never been the loving, huggy dovey sort of child, he used to at least tolerate nice words from us before ever having been on medication.

I started rispderal for him last night … an update will come once I weighed the pros and cons from this medication. I am nervous, I am sad but hopeful about having a bipolar diagnosis, you see these days you can’t seem to find the right counseling and parental advice without having a clear label on your child; which is sad and certainly says something about the society we live in.

My Son Will Not Live That Life

Ever since my five year old son was born I knew something was different about him, but I swore it was only because I felt not ready to be a mom. Honestly, I had zero interest in being a mother again but I was pregnant and about to have another child. I blamed myself for so long and to this day I sometimes am caught blaming myself for the way Aj is, but I have been reassured that my feelings of not wanting a baby, these internal feelings, are not the cause for who my child is. I am not to blame, even though I know this for a fact, it’s hard to swallow and accept.

Ever since Aj was a baby he seemed angry, he was always crying, ate constantly and for that reason I only breastfed him for 8 weeks, yes I gave myself a hard time about that too, considering I had breastfed my first born for 9 months before she stopped taking to the breast and preferred the bottle.  It seems that no matter what diagnosis Aj gets, I still go back to his days of being in my womb. I never listened to cool music, I don’t remember ever “talking” to him, nothing. I just was at a total state of disconnect, which makes sense for the position I was in during that time of my life.

Now, fast forward to age 2, I finally realized something was truly different about Aj, he wasn’t your typical acting out 2 year old, something was much deeper. At first we went to see a family psychiatrist after a referral from his pediatrician,  that didn’t go over so well. I left there pretty angry for that man wanted to put my 2 year old son on a skitzo type medication, seriously?! So I walked out and finally walked into a counselor’s office, one counselor who has really assisted in getting answers and seems to truly care about my son.

After a long time of seeing this counselor it appears we are all on the same page, my five year old same may indeed be bipolar. The problem with being first diagnosed with ADHD and now a mood disorder is this: the new pediatric psychiatrist is “new to our situation” so they have to go through their route of diagnosis, which I respect, but despise. The mood fluctuations of my son need to be resolved now, not later. We’ve already spent at least a year in counseling, probably longer, to diagnosis a mood disorder, of course after testing out if this was learned behavior or not and other routes to ensure a mood disorder was proper diagnosis.  We can not wait, he can not wait, he needs a chance now to have a normal life, to have bonds with friends that stem long term, that are not weathered by mood fluctuations and anxiety.

To make a long story short, we are now moving forward in trying to see what the pediatric psychiatrist will do, the counselor took the time to speak with her on his opinions and findings from our seeing him and stressed the importance of trying a mood stabilizer. I just hope and honestly, pray, that things will finally move forward, I hate watching my five year old son have no control over his moods, have no control over who he is and get sad over being mean but knowing he can’t control it. He is in school now and has learned to communicate what’s going on with him better, he has already told me that “sometimes when he is angry, he can think and it’s okay but then other times he is so angry that he can’t think harder to stop the anger” my son, at age five, went on to say that he “doesn’t want to be a bad boy, but he can’t think harder enough to stop sometimes”.

My heart breaks, but behind that broken heart lies a mom ready to fight, fight with all of her might to get her son properly diagnosed and ready to have a fresh start at a real childhood with normal moods and normal behavior. I have no problems with a child acting at his age level on things, but watching my son grow is like watching my sister all over again and I refuse to let him go down the road she went down because no one knew what was going on with her, yes my sister is bipolar and she went through hell and back before being diagnosed in her early 20′s with this condition. My son will not have to live that life, no way will I let that happen!

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