Sunday, November 30, 2014

The Importance of "Autism Support Teams"

The parents of children with autism know that it can be a lonely road to travel sometimes; they know it can feel hopeless. This hopelessness and loneliness can lead to depression which can lead to things that no person wants to think about. All parents probably have these feelings to some extent but the parents of autistic children feel these emotions multiplied exponentially. We parents define these emotions. As the mother to a child with autism I have experienced about every emotion on the spectrum. I have screamed to myself, cried, smiled, and everything in between.

Currently I write for emaxhealth.com; a few months back I wrote a well received article called Parental Social Isolation and Autism, this article spoke of how we parents isolate ourselves after our children's diagnosis. For those of you that have not read the article I encourage you to follow the link and read it. It is a very informative article on a very real problem we face.

Autism Isolation Syndrome:
I suffered from this syndrome for years, still do. Some days I am floating around stage 1, some days stage 2 and some stage 3. It seems that no matter what I always lose myself on the days that my child is isolating himself. I am terrified to go out into public on some days [not because of the strangers so much as because of us. It's a new environment no matter how hard I try to make him ready for it.] There is only one thing that gets me through these times. That isn't my husband or my family--no, it's the fellow parents of autistic children I have met along my journey with autism. The ones I have never and probably will never meet.

See, I lived many years without a single support system to turn too, no one understood. One day I met two women named Kat and Nunu; from that day on everything changed. Kat introduced me to what it felt like to have a friend that "got it" and Nunu introduced me to some of the important things in this life: support groups, listening to one another without judgement, and being there for one another [many years later she is still there for me]. These women changed my life.

The Friends I Have Made:

The ladies and gentlemen I have met over the years have all impacted my life; each left their own footprint on my soul [some continue to do so]. A few I can laugh with; a few I cry too; and a few I joke around with. All of them I know I can talk to, complain, and be open with about autism. In other words: they get it because they live it too.

The couple of individuals that I keep close to my heart:
  • My solace from Colorado
  • My runner from Massachusetts
  • My Australian beauty 
  • My lady bug sister from Indiana
  • My gigantic eared brother from everywhere
  • My amazing lady from Ohio
  • My Alaskan/Washington beauty
  • My sweetheart sister-in-law
  • My British colleague
  • My strength and fellow colleague from Wisconsin 


This is a hard life to live, definitely the most rewarding life one could be lucky enough to live, none the less a hard one. This group of people mentioned above are my "Autism Support Team" I know I can go to any one of them at any time and receive support. I take the frustrating things to them as well as the encouraging. [To my luck my support team happens to have international links so I literally have someone I can turn to at almost anytime of the day] Having a group of people like this surrounding you is crucial in the special needs world, especially when dealing with Autism Isolation Syndrome. Even if your "Autism Support Team" is reached by turning on a computer or dialing a phone number rather than going to their home these people are irreplaceable members in each of our communities. Without them you could very well lose your mind in some instances. You have to have some kind of support when living with autism. Just like our children need support--We need support too!






My plea to you:

If you feel overwhelmed; tired; depressed; even happy- reach out to the people that understand better than anyone. Ask the parents that have already been through what you are going through. Get advice from like-minded individuals. Develop bonds that will last a lifetime. Online support groups are a popular and effective method of personal support- they are also easy to get too and you don't have to mold your life around meeting times. They are always open. No matter how you do it find your "Autism Support Team" as soon as you can, it'll change your world.

Just be careful which support groups you join and what advice you listen too. Always research  information you obtain from individuals online and be discrete about information you share. You are also encouraged to read the aforementioned article to learn more about Autism Isolation Syndrome and how it affects us as special needs parents. 





Other Sites of Interest: 


Sunday, November 23, 2014

It's all relative... Autism in families

Increasingly each day parent's of autistic children are finding out they're also Aunts and Uncles to autistic nieces and nephews; or that their friend's now have a child diagnosed. The numbers are staggering. It has happened in my family multiple times. Each diagnosis I am told about is received with the same shock as I felt when I found out my son had been diagnosed. It never gets easier to accept however the diagnosis does get easier to explain. It suddenly becomes easier to relate to your relatives.

Autism in my Family

  • My son has Moderate-Severe Autism (Autism level 2-3)
  • One cousin with Asperger's Syndrome (Autism level 1)
  • One niece with High Functioning Autism (Autism level 1)
  • One nephew we believe to be on the spectrum
  • One niece diagnosed but not placed in a severity yet
  • One nephew diagnosed with High Functioning Autism (Autism level 1)
One of my nieces and two of my nephews are my sisters' children; my brother has a little girl with autism. To add to the amazement, my siblings who have children diagnosed happen to be on separate sides of my family. It is quite amazing the extent of this disorder in my relatives. It almost seems you have a better shot of having an autistic child in my family than you do having a "typical" child. This disorder didn't steal our children though, it gave them a different path to walk is all. It also created one of my best friends out of my little sister, without her I know I couldn't do this.




The "Club"

Each new diagnosis initiates a new member into our exclusive and diverse "club." Except our "club" isn't one full of massages and mud baths, our "club" in one of bags under our eye's and the amazing ability to operate on 2 hours of sleep. Our club consists of the toughest of the tough; the elite 1 in 68. Each new diagnosis sends a new family into overdrive and overcomes said family with questions and worry. The diagnosis tends to leave more questions than it gives answers.

When family members have children diagnosed [after our children] it's hard to remember that we were once at the beginning stage too; whenever they have children diagnosed before our children it's next to impossible to empathize with that parent, that family member. I still have a hard time with this part of the diagnostic process. I never say the right thing in the moment. It's hard to remember that there is a state of shock that overcomes one after the initial diagnosis, it's easy to hurt the feelings of others.

After all, there's a bit of forgetfulness in choosing ones words wisely-- this comes with fear. Sometimes there's also a bit of forgetfulness when considering the feelings of the warriors whom started their journey years ago.

 

Pity Me; My Poor Baby

When it comes to hurt feelings you have to remember these "newly diagnosed" parents earned the right to be less than careful with their words. If they want to ask a million times how their baby will ever live a normal life, let them; make sure you remind them there is no such thing as a normal life, each life is unique. When the parent is compelled to place pity on their child for autism having suddenly "taken their life from them" it's OK, let them; meanwhile making sure to tell them you used to think the same thing and they'll find their answer in their own time. When they need a shoulder to cry on, be that shoulder... when they need 2am advice on how to ease their child back to sleep, be that voice that laughs on the other end of the line and tells them to turn the coffee pot on....

When they need courage and strength, lend them yours...

They're allowed to break; they're allowed to wonder; they're allowed to tick you off... They just survived that diagnostic appointment that we all sat through. Their life was just turned upside down, they deserve the time they need to search their souls--just like we had [and in some cases continue to have].

Whether these mothers and fathers were afforded the opportunity to be in the room while their babies were diagnosed or if they heard it from family members, 2nd hand, because of personal circumstances--they still earned it.  Much like we seasoned parents experienced 10-15 years ago: your family member just became lost in a new world. Be the person they can turn to when they have questions or just need an adult conversation; not another person they have to endure.

Your family member/friend just developed a new relationship with you whether you realize it or not. You are now "autism family" and there is nothing stronger than those ties. 



Saturday, November 15, 2014

The Day my Son told me he Hates Autism...


Special needs parents have diverse perspectives surrounding the "cure debates". Some believe if there were to be a cure it'd be the children's choice to take it, not the parents’ choice to give. Some feel the mere thought of a cure to be preposterous and somewhat insulting. Then there are those that would give their children a cure in a second, if they could. Your stance depends highly on the path you have taken with your child, not to mention the path that was taken while raising you. I've always swayed towards it being insulting and it being purely my son's decision, never being sure if I was on the right side of the line but always leaning more towards it being insulting.


My stance on this topic changed the other day, in five minutes time. You see, while making our way through the produce department in our local grocery store my son said a few things that changed my life and my perception of his self-awareness forever.

The Biggest of Revelations

He was abnormally chatty all day that day; out of nowhere he asked me if there were "adult’s autism?" [Of course I said yes]. He then asked if there were "teen autism" and "old autism" [yes to both]. A few moments later he looked me in the eye [which rarely happens] and asked if there was a way to "make it gone". I told him no and asked why. His response: he dropped his head and looked defeated- let a tear fall and proceeded to knock me back into the reality of his world-- he told me he "HATES autism" "People stare" "people no understand words" "No one sees him". In response to this we spoke about autism and him as an 11 year old, about society and his peers, pretty much about it all. So I thought... Then late last night he added to the conversation by asking if "autism has brain". Needless to say we had another long talk about the disorder he apparently HATES.

My son springing this on me unexpectedly got me to thinking, how would his life-our lives be without autism? Would things be so different? Would a cure even be worth trying? I do believe that question is also one of those that's answer is one of pure opinion based on how you were raised and the journey you have taken with your child. None the less, a fascinating topic to ponder.  



 As a Mother..

I've always said I didn't think I'd change him, even if I could; however given this revelation- I wish it were an option. I've lived as both a mom of a nonverbal severely autistic child and as a mom of a moderate-severe functioning verbal autistic child... I have to say, at times, him being verbal is more challenging than him having no words. [Once again, that's an opinion that centers around the path you've taken and how you were raised]. When my son was a small child he was incredibly violent to himself and to others. He had massive meltdowns and he couldn't speak to tell me why. It was a very challenging time in our lives. It is and was a reality that at that point of time our lives were centered on him being stable not on how he felt about the life he was living. I probably didn't think about it in part because he wouldn't have been able to tell me and in part because given his level of functioning it never crossed my mind he could form an opinion on the given topic to begin with.


  
In Conclusion

 I have to say this: Never take your child's emotions or opinions for granted; whether they can express them or not--they are there. I now know that I did for far too long. I also know that it will never happen again. The initial shock of him verbalizing such a huge thing to me lasted a while but has since subsided quite a bit. Now it is time to focus on him recognizing the amazing qualities his autism allows him to possess, the things that raise his spirits about being "different", it's time for him to see a different side of the spectrum.  


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Sunday, November 9, 2014

Sometimes there's more to autism than just autism...

Most parents of autistic children will tell you that the worse part of raising an autistic child isn't their autism, it's the comorbid disorders that often accompany their autism. Most diagnosed children have at least one comorbid disorder accompanying their autism, some have several. My son being one of the ladder. When my child was younger I was so focused on his autism that it was hard for me to see that these side diagnoses are not just "part of his autism" but in fact completely separate and seemingly unrelated conditions.

Common Comorbidities to Autism: 
  • Gastrointestinal Disorders 
  • Sensory Processing Disorder 
  • Seizures and Epilepsy 
  • Intellectual Disabilities 
  • Fragile X Syndrome 
  • ADHD 
  • Bipolar Disorder 
  • Obsessive Compulsive Disorder 
  • Tourette Syndrome and other TIC Disorders
  • General Anxiety Disorder 
  • Tuberous Sclerosis 
  • Clinical Depression 
  • Visual problems
  • Explosive Behavior Disorder
  • Sleep Disorders 
  • Childhood Speech Apraxia
  • Nonverbal Learning Disorders
  • Schizophrenia
  • Anxiety Disorders
Much like the all too true saying, "If you've met one autistic individual you've met one autistic individual... No two autistic individuals are the same." No two autistic individuals present with the same comorbid disorders.

For example,

Here are the Comorbidities Accompanying My Son's Autism:
  • Generalized Anxiety Disorder
  • Severe Sleep Disorder
  • Explosive Behavior Disorder
  • Childhood Speech Apraxia
  • A TIC Disorder
  • Obsessive Compulsive Disorder
  • ADHD
  • Mild Mental Retardation
  • Epilepsy
  • Sensory Processing Disorder
While that may seem like an excessive number of diagnosis for one child, in our world it's somewhat typical. Each diagnosis has it's own fear associated and it's own course of treatment to follow, whether it be doing nothing or involving doctors. Each parent has their pick that drives them the "craziest" and their pick for which troubles them the deepest. The one among my son's that drives me the 'craziest' is his sleep disorder...

For one, we've never been able to pinpoint a name for it but we have had numerous doctors say it's the worse they have ever tried to treat, that's a fact. Second, it bothers him greatly when he doesn't get a full nights sleep [which is hardly ever]. He has trouble thinking clearly during the day, he's moody, and he loses his temper with his brother more often when he hasn't gotten 3 hours of sleep or more. Third, It wears on me to the max. He's a tween now, if that gives you an idea of how long I've been doing this. I firmly believe that 90% of the time I function on the level of a preschooler due to lack of sleep.

Our efforts to correct his sleep disorder have stretched to the extreme at times. We have tried so many medications it's not only ridiculous it's intimidating. We have put him through countless sleep studies and I've filled out so many sleep logs that the thought of them makes me sick. In the end we've been left with more questions than answers. We've been able to distinguish a pattern in his sleep and we now know that he does not have a normal REM cycle; however we do not have a single clue as to how we can effectively treat it.

My Son's Normal Sleep Pattern:

  • He goes 5-6 days with 1.5- 4.5 hours of sleep a night
  • If he ever sleeps over 3 hours he will not sleep for the following 2 days in the cycle, but it continues
  • On the last day he becomes violent at night and sleeps the least
  • On the 7th day he crashes for a whole day
All though I do have to say that as he's aging his sleeping pattern is starting to even out, some days I don't think it's happening fast enough though. Other days, as I sit up at 4 am alone watching him draw, it seems like less of a problem and more of a gift. Of my son's comorbid disorders the one that troubles me the deepest may seem a tad odd to some but it's his TIC disorder. He recently developed some pretty outstanding TICS that forced us to realize he's had them since he was a toddler. His newest one is a harsh, constant clearing of the throat. I'm worried he's going to hurt his throat but nothing we try helps ease the problem he's having with it. 

My point is, whether you are a parent of an autistic child or the grandparent of one... the aunt or the uncle of one... even if you have no tie to autism in your life what so ever: it's important to realize there's more to autism than just autism. There's a whole world of disorders and syndromes that these children and their families cope with. There is a whole world out there beyond what the news and online articles tell you.


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