Autism

This is a completely random blog post, just stemmed from some recent articles that have been published and on the radio, all over CNN lately. I just felt like I needed to put my 2 cents worth in as well. If you agree or don't agree, I personally dont' care either way. These are my thoughts and opinions and the reason why I blog.

Obviously, we've know the number of children being diagnosed with an Autism disorder has increased TONS over the years. These radio/news reports state they are trying to figure out WHY they've risen so much. Here's my take on the situation. I feel that however many years ago they "started" tracking cases, the umbrella of Autism wasn't as prevalent as it is now. (or Dr's didn't care to make it as prevalent, might be a better way of saying that) I think only "classic" Autism was what was tracked. It's those children that were "labeled" with the specials needs innuendo. It wasn't the children that had sensory issues, or social issues, or anything like that, it was the more severe signs so to speak.  Autism as we know is a HUGE umbrella of numerous types different developmental {Brain} delays. You have PDD-NOS, you have Kanner "classic" autism, You have Aspergers, and Rett Syndrome just to name a few. Now a days, so many children are able to get help at such a YOUNG age that things are looked at so differently. Early Intervention, which has always been around, has become more of a tool for parents like us. We are better directed to search for help, and get answers to our questions, and diagnosis' for our children. Our doctor's have a better understanding of these disorders as well.  Here's why I really think that number has risen so much over the past decade or so.

Courtney was born in 1997 - no developmental "autism" testing was done on her AT all, outside of a typical physical examination and the doctor normal developmental questions. There was no checklist to go off in regards to any one disabilities.

Caden was born in 2005 - Again, there was still no physical "autism" testing done on him either. HOWEVER ~ We had an amazing doctor, who noticed, that between his 9 month check up and his 12 month check up, that he regressed in numerous area, instead of progression in others. If he would learn a new skill, the other skills that he had already learned, were all lost. He no longer had words, or could roll a ball. Thankfully our awesome doctor, noted that this was not "typical" suspected something was right, and got us in touch with early intervention. Caden began therapy by the age of 14/15 months old. It was his team of therapists that noticed even more severe delays and recommended that we take it a step further and see a developmental ped and find out what was going on. Ultimately, he was diagnosed with Aspergers, ADHD, anxiety and Oral Motor Apraxia by the age of 3. He was fluent in sign language and never began speaking verbally until 4/5 years old.

****Those articles all state that when caught early enough, a child diagnosed can and will grow up to become a typical child. I firmly believe this. Look at how early Caden's delays were caught. How soon we started therapy for him. Not just speech, but OT, Counseling, and special education. Long before he was even 1.5 years old. Full time therapy and classes at a school at the age of 3 in a 6:1:1 class. That's huge!  Do I think Caden is a "typical" child right know? No, not at all. Caden has his quirks. He still {to us} shows lots of Aspergers symptoms. He still struggles with speech/apraxia problems. He still shows a ALOT of ADHD and most importantly, he has a LOT of learning disabilities to overcome. BUT he has come FAR in 6 years. Farther then he ever would have come, had we not traveled the route we would have. We go back to Rochester for more testing next week. DO I think they will keep his diagnosis the same? Nope, not at all. He probably doesn't show enough "autism" signs to be classified as such any longer, but he still nonetheless, has some pretty severe developmental/emotional delays. And I am interested to see what we walk away with next week.

Colin was born in 2007 - exactly 10 years after Courtney was born. Only 2 years after Caden. The things that changed in those years were drastic! I couldn't believe the amount of testing they did and questions and paperwork that you have to fill out. Your actually asked "do you think your children may be autistic"? Or maybe we were only asked that because we had one child diagnosed already? Regardless, Colin at his 12 month/18 month and 24 month appt WAS given autism testing. he passed 12/18 months. By 24 months, he was already showing delays and not long after 24 months, he was diagnosed with severe anxiety. He began therapy before the age of 2 as well. He still does. Speech, OT, PT, counseling, and special Ed. he's been in a therapy based school program class room since he was 3 as well. Because of Col's Anxiety, getting diagnosis for him was much much more difficult. You have to work through all that anxiety to figure out the underlying causes etc. He acted as if he has ADHD (which is does now) But was the ADHD playing out as anxiety, or the anxiety playing out as ADHD?? We had to work HARD for over a year to get Colin the proper treatment, let alone a diagnosis. (which in the end, was Aspergers/ADHD) explaining where his anxiety's came from. Thankfully, with meds, Colin is much easier to live with. However, therapy is STILL very prominent in our lives and he has a LONG way to come.

So you see, after my novel, I feel like the number have risen so much more, is because it's tested more often. AND the different aspects of it are diagnosed  more often, not just "classic" autism. Mine were diagnosed with Aspergers. They have a family member diagnosed with PDD-NOS. 10/20 years ago, where those "other" parts of the umbrella counted? I personally dont' think they were.

And let's not get started on what causes Autism. If you ask me, It's the way my children were born. They came out of utero with these delays and disabilities. They didn't wake up one day and were "autistic" maybe one day they had a diagnosis yes, but they weren't fine one second and not the next day. Looking back at infancy - EACH of the boys had alot going on. And this all makes so much more sense to us now. I believe it's genetic. I believe it's who they were obviously meant to be. It bothers me that people try to "blame" things on making their children the way they are. They don't "have" or didn't "get"  Autism, they ARE autism. Love it and embrace it for what it is.

And if you'd like to read the article from CNN Click HERE Mike and I, had conversation over this at dinner last night!

Today I got a Kiss

I know most of this means nothing to lots of people, but to me, it means the world. Each time I think of him walking up to me and kissing me with those tiny little lips of his, I feel like I want to cry. All by himself. I didn't say "Colin, come give me a hug and Kiss". I was just sitting there, waiting for his bus, and he walked up to me, and kissed me on the lips, I then gave him a hug and said Thank you Colin, that was so nice. he stood there then in my arms, for about 3 mintues while he watched TV. I rested my head on his ear and felt his rough curls on my cheek. His ear was cold. It was the best thing ever. I am loving each and every second of this journey so very much, and each time he opens up just a tiny bit more, makes this long hard journey worth every single second.

I got a hug!

For those who don't know Colin the way we know Colin, or before Meds, the best way to explain him is....being kept to himself I guess. He's never been one to be lovable or cuddly. If he gets hurt, he doesn't want you to comfort him or kiss the pain away, in fact he'll get extremely angry if you do. If he is sad, he won't come to you for some loving to help him feel better. It's just all part of who he is, and always has been. Even as a baby, the only time he wanted to be cuddled was when he was nursing, when he was done, he would be just that - done. Get me off your lap and let me go now. We actually Looked forward to the times that he was sick, since he would sit on our lap and not move. It was the only time that would happen.   I know I've posted alot about Colin lately, but I can't help but to share all the changes that I am seeing in him since he's began his meds. The double dose of them to be specific.

The best way to explain it and this is what I keep saying, Is that I am finally being let in, and learning to know who Colin "is" after 4 years of NOT really knowing him all. I feel like this little person in front of me now, is exactly what he's meant to be all these years, but couldn't and didn't know how to do so. Thankfully with intervention, he is able to be. It's kind of like adopting a child in toddler-hood, and trying to figure them out. It's wonderful, amazing, scary (since your still treading lightly) and exhilarating all at the same time. He is so willing to love. So open to hugs. So excited to tell you things, and learning and loving how to show his feelings. He tells us when he is sad or upset. If he gets a boo, boo, he'll show it to you (you still can't touch it) He thrives when we give him all the positive feedback that we possibly can (before, he would yell back at you and say NO, and put down positive feedback) We even took him to church on Sunday for mass and he was wonderful!! (as wonderful as a 4 year old, who is developmentally younger is expected to be) I was so proud of him, I just kept telling him all day long! Caden too was good, it was so awesome to sit in church as a family, in one pew the ENTIRE mass. We've N.E.V.E.R done that before.

Yesterday - I came home from work, took of my coat, hung up my purse, and Colin came up to me and gave me a hug. I looked at Mike, and I know he knew what I was thinking. There is NO better feeling in the world. This is the first time, Colin has ever came up, willingly and hugged me, without any prompts, or reasons behind it. What a feeling. I love that he tells me numerous times while I am laying with him before bedtime that he loves me. I know he means it too, he's not just saying that because it's what he "should" say.

A friend of mine (Scott Buchanan) said it best on facebook last night. he said congrats,that window is opening. And it is! Colin is finally after 4.5 years of being behind it, finally opening the window and letting us into this world. Teaching us, who he really is. I am loving learning all about him.

Colin & OCD

This is actually from a couple of weeks ago (1/21 according to the computer) Poor Colin was determind that he had this baby bear that went missing. Becuase of his OCD, he KNEW it was somewhere in this house and he focused on nothing more all day long. For Real. 7.5 hours. This started right before noon and finally settled as we got him in bed at 7:30pm. My poor guy. So this is what his closet looks like, after he tore everything off of the shelves and attemped to climb the wall so he could look in the crawl space for the specific item he wanted. In this picture, he is actually IN the closest believe it or not. He's standing on the bottom shelf. You can almost get a glimce of his PJ's. They are red/green fleece plaid PJ's. My heart broke this day. It killed me that I, as his mom, wasn't able to help him, and put him at ease. the monday after this was a Med check appt with his psychiatrist. I originally wasn't going with, Just Mike, after this, I decided that I too, needed to be there.



Out of the Darkness

Yesterday, I had the opportunity to attend a parent forum on Teenage Depression & Suicide Awareness. It was beyond informative. Actually, not just in the teenage aspect of it. They had numerous vendors set up out side of the auditorium for about 30 minutes prior to the start of the forum. I was able to get LOTS of good reading material, for all things. Drug & Alcohol abuse in teens etc. I was also able to speak to a few different mental health agencies about Colin, and care for his future. Colin by all means has a mental illness. Not just Aspergers, or ADHD, Colin has anxiety. Anxiety is partially stemmed from Depression. When someone asks me to explain Colin’s mood, I say depressed. It’s the best way to describe him most of the time. Depression is a mental illness. Mental illness is a disease of the Brain. Much like diabetes being a disease of your blood.

On the Panel of those speaking to us were, A couple, the parents of a teenage child who completed suicide just under 2 years ago. There was also Eric Weaver, who was representing the foundation of suicide prevention, and someone representing the office of mental health in WNY. It was quite interesting, listening to each person tell their stories. The parents of course quite interesting. They obviously had no inclination that their son was suicidal, or depressed. It was brought up that we all go about talking to our children about all the important talks in life. Drugs, alcohol, sex, teen pregnancy, bullying etc etc, but we never touch on the subject of depression. Which is odd, since it’s *usually* depression which drives our loved ones towards these other bad behaviors to begin with. Joe, who was the child of Phil & Linda, was 17, a middle child & a successful student at Williamsville North High school. No one had any idea that he was depressed, had they known just a little bit of information, this may have been prevented. He would have been directed to help. He left an older brother, younger brother and his parents behind with nothing, not even a note. They shared their story so we would understand that sometimes it’s not obvious.

Eric Weaver speaking was the one who I enjoyed the absolute most. He threw facts/figures at us that blew my mind. He was just amazing. He started off by telling us that Mental Illness is NOTHING to be ashamed about. He has 4 diagnosable mental illnesses. He has Bipolar disorder, Depression, Anxiety with OCD, and PTSD (post traumatic stress disorder) He’s been hospitalized 7 times from 1996 through 2008. He’s on medication, in therapy and always will be. He also has a teenage daughter who has depression as well as borderline personality disorder. This stuff is not new to him, not as a person, a professional or a Dad. He couldn’t stress enough how no one should be ashamed of any mental illness. It’s not something we triggered. It’s a chemical imbalance in the brain.

I bring this up, because as we all know, I suffered from PPD after Caden’s birth. (And Colin 2 years later) Was I ashamed? YES! Did I want anyone to know what was wrong with me? NO! That is of course, once I figured it out. Well, Mike figured it out actually. 7 years ago, I would never have told anyone that I suffer from anxiety. After going through what I did, I am MORE then willing to tell others that I suffer from a mental illness. IN actuality, 3 people, out of the 5 in our home, suffer from Anxiety, and are all treated with meds, some with therapy. I have no problem calling my doctor up and saying I have panic attacks, what can I do? Or my medicine isn’t working anymore, can we tweak the dosages? I know what works for me, and am not afraid to ask for it. I know too, what coping tools that I’ve learned over the years will help me get through whatever is bringing me down at that moment. We live in a very stressful house in general. We have 2 special needs children, who require A LOT of attention. We have a teenage daughter who is involved into lots of school activates/sports, on top of just being a teenager. School is always a struggle as well. Not to mention, she has these 2 brothers who require most of mom & dad’s time, and I am SURE that is not an easy thing to deal with. We have a mom who is working full time, and a dad who is currently laid off, creating obvious financial hardships. Add in doctors’ appointments, religious and other actives and meetings and our days are filled typically until pretty late in the evening, with out a second to stop and breathe and enjoy what life has given us. I hope that someday I can look at Colin and not see the sad look in his eyes. To say that he’s not depressed any longer. I think as he gets older, and can better understand what is going on with his body, he too can figure out the coping skills that he needs to overcome this. I know he will, it just takes time. He is so delayed developmentally right now, that understanding why he feels the way he does, is not something that we can work with him on right now. I hope one day when Courtney feels like she isn’t happy, or may be depressed that she knows she can come to us and talk to us. I am not afraid to tell others that I am medication. She knows I take meds and for what I take them for. I hope having this open relationship with her now; will help her to trust us, or another adult in the future.

So now, I’d like to share with you some facts/figures that that I learned last night. Depression and Suicide are real illnesses, which NEED to be addressed.

*Did you know that every 15 minutes a person completes suicide?

*Did you know that every minute (yes that is 1 minute), a suicide attempt is made?

*1 out of every 20 people has or has had suicide thoughts.

*1 out of every 5 people has a diagnosed mental illness. Think about that one for a second. Look around you right now. Think of where you live, or where you work. Look at my family! I have 3 of 5 people with a diagnosed mental illness. As you stand in line at the bank with 5 tellers and 4 people in line with you. 2 of the 10 of you have a diagnosed mental illness.

*Some other signs of depression that you may not think about? Constant complaining of headache/stomachache (Colin always talks about headaches)

*Did you know Suicide is the 3rd leading cause of death for 19-24 year olds, and it is the 2nd leading Cause of death in 15-19 year olds?

*Depression is NOT the leading indicator for suicide. The highest indicators are hopelessness & helplessness. Listen for these cues in your children.

I realize this post might not be proper to be putting on our family blog. Nor is it a subject that most adults or families like to speak about. We are a very open family. We talk willingly and openly to Courtney about a variety of things. I posted this more as a reference and to let others know, you’re not alone. And DO NOT be ashamed if you too are or have suffered.

Colin Happenings & diagnosis'

Since it's been almost a full year since I actually posted many comings and goings, not many of you would even know all the problems we've delt with Colin. A while back, our pediatrician diagnosed him with a general anxiety disorder. Our days/nights and basically everyday life was affected by How Colin woke up in the morning. If Col wasn't Colin in the happy form, you were doomed. It wasn't worth it to try to make it better, or fix it, Since there was NO "fixing" it. Someday I'll write about our October Dream Cruise Vacation from Hell with the kids. Caden wasn't quite as bad as Colin, but Colin... oh man. Needless to say, Mike and I could NOT wait to get home, and get back to work. Col's sensory issues, OCD, anxiety and over-activeness were too much for this family to handle for 10 days straight out of the house. It was not pretty, and Yes, we did have ugly words with others who commented on our child.

So.. our pediatrician (who is wonderful by the way) agreed that Colin needed SOME sort of med to even him out. However she didn't feel comfortable enough to distribute an anxiety med to such a young child. We were given a million referrals, none of which would either take our horrible insurance, Or, those who would take said insurance, did not accept pediatric psychiatric patients. :-( We were put on the waiting list to get into the psychiatric program at Strong Memorial Hospital in Rochester, NY, but that list is months, almost a year long. Knowing he, and us needed help sooner, we turned to catholic charities, In Buffalo. We met with a counselor a couple of times before being refereed to the dr in the office for a psychiatric eval. And... that day (dec 27th 2011) Colin was his typical usual hyper overactice, anxious self. We were shocked to learn that with all of the things effecting Colin (OCD, anxiety, ADHD, meltdown, tantrums, depression to name only a few) that Colin fell on the Autism Spectrum as well. Colin has Aspergers. Thankfully, we were able to get him not only on one med, but 2. Some pretty strong ones to be honest. We are at the lowest possible dosage we can be at right now, but the one med, is used in adults over the age of 13 (with a different dosage obviously) to treat Bipolar disorder & Schizophrenia. What??!! I freaked when I read this. SO of course, I read the ENTIRE 10 page phamplet that came with it, to find, that it ALSO is used to treat Autism Symptoms in Children under the age of 10 *whew* I felt much better about that. He was also put on a 2nd med to help with his anxiety and Hyperactivity.

1 week later, the meds are doing what they should. Colin is like another child. He can be loving occasionally, he is much more relaxed, and he is much more focused. It's evened him out, and made daily life bearable for all of us involved. He still needs to go for medical testing to rule out anything else, as we had to do with Caden. He is scheduled for his EEG next Tuesday the 10th. Then we need to do an EKG and numerous blood works. I am doing only one at a time, only because remember that horrible insurance I mentioned? Yea, will it covers only 15-20% of all of these tests. Add up the EEG and EKG alone and we are well into the thousands and thousands of dollar range. We'll do it was we can , but for now, I couldn't be happier that we were able to end 2011 on a positive note, with not only meds for Colin, but a diagnosis as well.

What If??

What if the H1N1 shot that Colin got might cause Autism in the end???

This is just something that is driving me crazy. I don't really think this is going to happen. I am a strong firm believer that Autism is genetic. I don't think it's something you can "catch". I don't think you wake up ONE day and show every sign and symptom leading to an autism diagnosis. I believe that it is something your born with. I completely understand there is a TON of controversy out there surrounding that, and I am not here to bash what others may or may not think, since I am also a firm believer that everyone is entitled to their own opinions. I just think that Caden was born the way he is, I don't think it's anything that "happened" one day. I think that it just took however many months for the noticeable symptoms to show their lovely hand in his development. Thinking back though, we've always said that alot of his infancy made alot more sense to us. ok, so now, with that being said:

While I had Colin at the doctor yesterday for his pre-op medical Clarence and 2.5 year physical, I decided to get him the H1N1 shot. No one else in our house had this, Courtney was suposed to get it through school a few weeks ago, but she had a slight fever of 99.6 and they refused her. I only wanted to do her and only her since she seems to get sick much much more then the rst of the family. Other then that I didn't plan on getting it done for anyone else either. But for some reason or another I got it done for Colin. Yesterday, and today I am second guessing myself with the "what ifs??" Why do you ask? Well the dose that Colin was given, was NOT one of the doses that was preservative free, which means that it contained a level of the thimerosal, which from some studies has been known to be linked to Autism. Which of course raises red flags for me. *sigh* Because I believe that Autism is genetic based, this shouldn't bother me, but it does, just because. Just becuase someone sometime said that it was linked, it scares me. There is already Autism history in our family, so because of that history does that mean that Colin will have even greater odds of the thimerosal having some sort of effect on him?? I know, I know, It's all things that I shouldn't worry about. I KNOW that Colin has sensory delays and ONLY sensory delays. His delays are Totally different then anything that we went through or do go through now with Caden. I also believe too that Autism shows it's face at a young age, although again some studies have shown otherwise. Again this post is based on my beliefs and opinion, so I apologize now if this offends anyone later on.

So although I know in the long run that Colin will be fine, I can't help but kick myself today, wishing that I didn't do the shot. I have decided to NOT take him back next month for the 2nd dose of it. I am leaving well enough alone. I don't believe that Autism needs reason for "blame" whatsoever. BUT if for some whacked out super strange out of the blue reason Colin ends up with more problems and happens to need or require Autism testing and ends up with a diagnosis down the line, I will ALWAYS wonder:

"What If, I didn't do that shot on Thursday January 7, 2010?"

A 6 year old young Autistic boy once told me "There is no such thing as Autism, it just means that I am more special" Just the fact that my children are special needs, makes them ALL that much more special to us anyway! :-)

Thanks for reading my corny stupid fears and vents of what if's. I guess I just needed to type it and get it out.