Autism Awareness Day - Are You a Parent in Denial?

Today, I am participating in "Light It Up Blue" for Autism Awareness Day. I do it to help give a voice to the 1 in 88 who have been and will be diagnosed as being on the spectrum because more attention needs to be given to this issue. I also do it for my son, Bubba, who is on the spectrum himself.

Almost everyone has heard of Autism, however, there is still a big stigma that comes with the diagnosis. The belief that Autistic kids all fit in one mold, that there is one general type of manifestation of the disorder causes those who don't know to stereotype and misjudge these angels and that often leads to discrimination.  Sadly, it's that fear of discrimination that causes many parents and caregivers to not seek out the help they need for their children. That's what this blog is about today. No one wants to accept or even admit that their child may have Autism or any other disorder, but I'm here to tell you that it's not the end of the world, that you don't have to be afraid of accepting the diagnosis and all that comes with it.

No one knows their child better than their mother and father, and when my precious Bubba didn't speak when he should, wouldn't call me Mommy and cried and screeched at certain sights and sounds, I knew in my heart that something was wrong. Instead of listening to the voice in my head, I chose to suppress it and make excuses and reach out and grab a hold of all the reasons others gave me for his odd behavior.

"He'll outgrow it."
"All children develop at their own pace...just give him time."
"He's just sensitive."
"Do you want him to be sick? Just let him be."

And I did just that, I let him be. But as he got older, there were signs that couldn't be ignored. We took him to the county and had Child Find evaluate them. In a  single, 15 minute session, they determined that he was functioning normally, but that the error was with me, that I chose to keep him at home and homeschool him instead of putting him in school with his peers. So I accepted that diagnosis, enrolled him in school and waited for the issues I'd notice to clear up. Not the case. Instead, things pointing towards Autism became more clear. He would not socialize, he would not participate with groups, he would not make eye contact with others. Again, I tried to rationalize and accept what offerings of hope people were giving me.

"He probably just doesn't like the other kids."
"I was the same way, Bubba's just a loner."
"Do you want him to be sick? Just let him be."

It took his wonderful preschool teacher, Ms. Judi, sitting my husband and me down and telling us, "Look...there is a problem." Hearing her voice everything that was in my heart, her listing all the issues I had noticed, all the issues that weren't being resolved with time as I believed would happen, broke down my wall of defiance and I decided that the only way I could help my son was to accept that he needed help. My decision to switch from defensive to proactive is what, I believe, was the turning point in Bubba's life and his future. With her help and the help of his other teachers and counselors, I managed to get the county to do a full assessment and get him the help he needed to become a better him. With the establishment of his IEP, the start of occupational, speech and behavioral therapy, we were able to unlock his potential and create an environment for him to thrive. My only regret is not accepting earlier what I knew in my heart to be true because, as wonderfully as he is doing now, I wonder where he could be if I had moved sooner.

This is why I implore parents and caregivers to take note of that feeling in your heart that tells you something isn't right. Don't squash it down, don't listen to the advice of others who may be saying what you want to hear in their efforts to make you feel better. Listen to yourself. When you don't and you choose to ignore the signs that your child may need more than you can give, you are only delaying the inevitable and making things harder for you all. This is the reason I feel that Autism awareness is so important! We need to teach those who don't know about the disorder the facts so we can remove the stigma that comes with the diagnosis. Shame and fear keep parents and caregivers from seeking out help, because we worry about the prejudice and judgements that come with the diagnosis. If only those who do misjudge would learn that Autistic children, even the non-verbal, have the ability to communicate if the proper method is taught, and that they love and feel just as much as a neurotypical child. Or if they could see that with the proper therapies and early intevention that many children on the Autism spectrum can grow and go on to live totally independant lives, working, playing and raising families of their own. Or if they could understand that being Autistic does not always mean mentally disabled as some of the children on the spectrum are highly intelligent and are capable of intellectual thoughts and actions. A diagnosis doesn't have to be the end of the world. It can be the beginning of a new world of possibilities for your child if you are willing to seek the help.

I admit, there are times when I do feel down about Bubba because I worry. I worry about how he'll feel when the children start to notice and make mention of his tics and quirks and how he'll react if they point them out or make fun of him. I worry about how he'll do when it's time for me to let him be more independant, when he gets to the age where he'll need to, want to, venture out more without me around. I worry about how he'll feel when he is old enough to understand that he has Autism Spectrum Disorder, and what that'll do to his self esteem. I worry! But I know I'd worry just as much if he were a neurotypical child.

Some words of advice to those who do decide to seek help: Go with your gut. Don't just accept what you are told. According to the first set of Child Find "experts" that saw Bubba, he was completely "normal". According to the well-known child developmental specialist that saw Bubba this past Fall, he was simply ADHD, not Autistic. In both instances, although I was momentarily elated by the diagnoses and eagerly grabbed them and waved them around, my gut instinct kicked in and I sought futher answers. Bubba is now classified as "ADHD with Autistic traits", and I think I've finally found a diagnosis I'm happy with, so I can stop looking and work on helping my son work with his designation.

Has his diagnosis been the end of the world? No. Is it hard? At times. But I am so proud of Bubba and all the strides he's made that sometimes I think my heart might burst. I love him just as much as I love Goose, my neurotypical child, and it has never even crossed my mind to feel otherwise. I love Bubba's personality and I can't imagine him acting any other way, and I think I would mourn the loss if he did. Besides, the diagnosis does not define our relationship. I am his Momma, and my duty is to be his best supporter and I will be forever. No diagnosis will ever change that for me, and it shouldn't for you either.

The Top 10 Things Not to Say to a Woman Who Has Suffered Pregnancy Loss

About a month ago, I happily announced my pregnancy on this blog. I also announced it on Facebook, Twitter, to countless friends, family, "kinda knows" and even strangers. I was excited! Some probably think that was an unwise decision, and they are right because, unfortunately, I ended up miscarrying at almost 3 months along. I knew this was a possibility before I made the announcement because I have a history of miscarriages, but  my line of thinking was that if the unthinkable should happen, at least my friends and family and others who care could help me get through it. There are some flaws to this thinking, however, that comes in the form of people, who in their effort to comfort you, really don't know the "right" things to say to someone in my situation.

Are there "right" things to say to someone who has experienced the loss of their child, either due to miscarriage or stillbirth? Maybe not really, but there are definitely some wrong things to say. I took to a wonderful miscarriage and pregnancy loss forum I belong to and asked the ladies to post some of the things that were said to them in the name of comfort that really stood out as the wrong thing to say at the time. Below is the list I compiled from our experiences. The list is actually much, much longer than this, but I picked out ten of the ones that we all seemed to get told in common.  Please keep in mind, many of us are not ungrateful for the efforts people make to comfort us. In fact, many of us choose to keep quiet about our hurt feelings because we know that the speaker meant well  and was just trying to ease our pain.  This list was not written to be snarky, but to give insight. Please take it as such.

The Top 10 Things Not to Say to a Woman Who Has Suffered Pregnancy Loss

#1: "The baby was probably sick, so it's probably better this way. You wouldn't have wanted a sick baby."

Yes! Yes we would have! Of course we all want a healthy baby free of health issues, but if we were destined to have a child with disabilities or illnesses, we wouldn't love it any less, or wish for different. We'd welcome the child and love him or her with all our hearts and be grateful for the chance.

#2: "It's in a better place" or "God must have needed another angel".

This is tricky. Yes, most of us who are Christian appreciate the fact that our child is with Our Father, however, at this moment in time we are feeling a little selfish and we really want our baby with us. Plus, for Christians like me, I don't want to believe that my loving God gave me the miracle of a baby only to take it away from me and cause me such pain and grief.

#3: "Well, at least you know you can get pregnant!"

Yes...but how does that ease the worry about whether I can ever stay pregnant? Or carry out a healthy birth?

#4: "At least you already have children" or "You already have # children, so you should feel blessed" or "You already have # children, isn't that enough?"

All those statements imply that I'm greedy, that I don't appreciate the living children I have, that I don't deserve to mourn losing a baby because I'm already a mother.  They don't ease the pain but they actually bring on feelings of guilt that I'm mourning my dead one when I should be feeling blessed and satisfied with my living one(s).

#5: To those who have had miscarriages early in pregnancy , ectopic pregnancies, or blighted ovums: "It wasn't a real baby yet" or "At least you didn't have a chance to get attached".

For most women, the love starts as soon as they see a positive pregnancy test. Your brain starts thinking and planning, your imagination about your child is immense. So why wouldn't I feel attached or feel a loss or feel that my baby was "real"?

#6 "It'll happen if it's meant to be" or "Maybe it's not in God's plan for you to have children".

Our bodies were meant to have babies but, sadly, sometimes there is a glitch. God created us to procreate and populate the earth, so how could it not be in His plan? He blessed the hands of those who found methods to cure infertility! To say these words you are pretty much saying that I'm not in God's plan, and that hurts.

#7 "You are too young to have children anyway" or "You were probably too old to be trying to have children".

I shouldn't have to explain this one. Pointing out my age does not ease my grief.

#8 "You can always try again!" or "You're young, you have plenty of time to try again".

True, we can, but we're not baking a cake, we were holding onto a life that we thought was precious. It's not like something we could just do-over, we lost something substantial to us and telling us to "get back on the horse" offers little in the way of comfort. Besides, unless we are really close, you might not know that we've tried for ages to get pregnant to finally have a success, so trying again may not be as easy as you make it sound. 

#9 "I know how you feel. I felt the same way when my Mother/Grandmother/Cat died".

No, no you didn't. Loss of a relative or family pet or even a spouse is extremely hard and painful, but it's a different pain than the loss of a child. Not saying that you didn't hurt as badly, but they are different types of grief and they cannot be compared.

Finally #10: "Life goes on" or "You have to move forward" or "Don't dwell on the sorrow".

I loved this baby from day one. I gave it life and a future and a place in my family and in my heart immediately. I cannot just forget it. It was and will always be a part of me. I will eventually move forward in my own time, but the sorrow will be there forever.

By the way, this list applies to the expectant fathers as well. They are usually suffering this loss as much as their partners.

So, you might ask, what is the right thing to say? Maybe it's not the right thing, but the safest thing to say?

"I'm so sorry."

Knowing that you are genuinely sorry for our loss is comfort enough. Feel free to add "I'll pray for you" or "If you want to talk, I'm here to listen" but "I'm sorry" is kind enough.  Sometimes, as humans, we feel that we have to go all out to show our sincerity and caring, but at times of grief I think less is more. When we need more, we'll reach out for more, and if you can handle it, be there to be a shoulder to cry on or a sounding board to whom we can simply talk through our grief.  We appreciate and feel comfort in just knowing that you are there.^^

What Happened to "Help Your Fellow Man"?

My husband donates blood as often as he's allowed. He's the precious blood type of O- that is coveted. Since he donates often, he regularly gets newsletters mailed to him from the Red Cross with updates, the latest location nearest to us that is collecting, and other Red Cross news. One just came in the mail, not ten minutes ago, and I decided to flip through it. Imagine my disappointment to find that the Red Cross had implemented a rewards system in the beginning of this year to encourage people to donate blood and platelets.

Am I the only one who feels badly about this? I don't think doing the greater good and helping mankind should be contingent on what prizes one can redeem their efforts for. It's not the Red Cross I'm upset with for creating this system, it's the fact that we humans have gotten so selfish that so many of us will not even consider doing something for nothing. When I posted this on Facebook, a friend replied "Some people need encouragement to help them to build up the courage to do it". I reject that answer because out of all the reasons to get over their fear or apprehension to donate blood, such as saving lives, it takes the prospect of a prize to spring them into action?

It is really disheartening to hear and read so much "ME! ME! ME!" propaganda. Many don't seem to be concerned with the state of the world and how we all need to come together to keep from falling apart. It's about one's own personal convenience, everyone else's inconvenience be damned, and the line of thinking that is becoming all too common: "This benefits me how?"

Granted, I understand that there are some times when we have to be selfish for our own good. You can't just lend money to every one in need, or go without a necessity to help someone else, but when it comes to something that we are freely able to give, is it right to essentially hold it hostage for remuneration?

Back & My Announcement =)

Okay, starting a blog right before my busiest time of year family- and duty-wise wasn't the best idea I've had. I was all set to sit down and write 1-2 blogs a week but BAM! Christmastime and all the parties, events, cookie making, etc...that went with it came along. January was a bit better but then on came all the illnesses that got passed around the house. It is now February and I think I can breathe again. And blog again. Hopefully, I didn't just jinx myself.

The holidays were great this year. Both my boys were at the age when Christmas finally had meaning to them. Especially to my oldest. I loved being able to explain to him the true reason for the season, to let him know that it was more than a time for him to get gifts. All the celebrations we had, including the family ones, were surprisingly drama free. Best of all, I got everything on my list that I wanted - an imported Japanese teacup and teapot and an immersion blender. (Be prepared for cooking blogs in the future!)

Now, on to my big announcement. I'm pregnant! This was not planned, as I've given away all my baby things because I was that sure the factory was closed, but as a dear and wise friend pointed out "If you're not preventing, you're trying"! I had my first baby at 31 and my second at 35, and now, God willing, this one will arrive when I'm 38. I'm only 6 weeks along, so it's still early. Some people have questioned my reason for sharing my pregnancy so early in it's stage, especially after my history of many miscarriages. The main reason was shock...I was just so surprised that I kept letting it slip out! The second is if I do end up having a miscarriage, at least I know I will have people who will help me through it. I am reserving my excitement as much as I can until I see a viable fetus on a sonogram. I'm on baby aspirin and progesterone and all I can do is pray that everything is A-OK. Meanwhile, I'm experiencing morning sickness like I never had with my previous pregnancies, sore nipples, crazy dreams and fatigue, so instead of cursing all that, I'm accepting those as signs of a healthy pregnancy.

So I have been given a lot to blog about in the future. I plan to squeeze every bit of entertainment and life out of all my current situations as they evolve, so hopefully there will be good material somewhere in there. Time shall tell, no? LOL.

Grounded!

At Bubba's school, all kids who get picked up instead of riding the bus have a designated waiting area in the gym. My little darling took it upon himself to sneak out when the teacher wasn't looking (he was promptly intercepted) in order to go find me for himself. This is his second time doing this in a week, so I couldn't just let him off with a warning and speech like last time. This time I took away the computer, TV and dessert. (Just for a day-- he's only 6 after all!^^)

Anyway, I thought he handled it well because he looked very contrite and nodded with what I took to be understanding when I asked him "Do you understand why I have to punish you?" Well, I guess he did take it harder than I thought because, upon arriving home from school, he went straight to his drawing/writing table and wrote me this letter, a letter in which I am getting grounded! From two of my favorite things, no less! I admit...I had to walk into another room so he couldn't see me laughing. This one gets saved forever!

I love how he calls me by my name, not by "Mommy". I also give him kudos for knowing it's "you're and not "your", and cuteness will keep me from deducting a point for mispelling "mean". =)

Boys don't wear nail polish!

My boys and I were relaxing on my bed last night just before bed. The littlest, Goose, being nosy, decides to dig through my "Mommy" drawer and finds a bottle of clear coat nail polish with glitter. My oldest, Bubba, sees it, takes it from his brother and holds the bottle up into the light and asks me what it is. The swirling glitter has them both entranced. I tell them that it's nail polish and describe how it's applied. Bubba then asks me to put some on his finger. Uh oh...how do I answer?

I've never been one to stick to the implied rules of society. I mean, I don't break the law and I try to follow the Ten Commandments as best as I can, but gender roles and social norms...if they seem to hamper my style and personality, I'll dismiss them. I'll admit, I've caught a lot of flak for my decisions but the burden was mine to shoulder as it is for every individual who makes a choice to stand on their own, away from the crowd. But we are talking about my boys now. Do I want them to be raised to be individuals who move to their own beat created by their own rhythm? Absolutely. But can I handle watching them be teased, ridiculed or even shunned for their choices. Do I want them to grow up being called "weird" "odd" or "difficult" just like Mommy was (and still is called) by some?

The answer is no, I do not, however what I will try to do is raise them with enough pride and self-esteem that those words will not sting as much. I will raise them to know that being the odd one out is not that bad, and that being "one of the crowd" can be overrated. The funny thing about life is that in our adolescent years, the years that are the most vital in forming who we are and how we'll contribute to society, those years are when it is hammered into us to conform, to fit in, to be the same, to do what all the rest of the typical kids are doing. It's not until we finally get out into the world that many of us realize that we really don't want to fit in with everyone else...we really want to be our own individual selves. Ironically, it's when we are adults that fitting in and conforming IS a necessity. So by that logic, should youth be the time when we encourage the stretching of imaginations, the reaching for seemingly unattainable goals and the testing of the boundaries of "normal"?

So back to last night. I am an individual who doesn't care what people think about her most of the time, but I am also aware that not everyone around me may agree with my stances, including my husband and other members of my family, so I compromise.

"I have a better idea," I tell Bubba. "How about we put some on your big toenails instead?"

I didn't tell him no, I didn't have to say anything about how the world of nail polish and glitter is only for girls, but I did get to allow him the experience he desired in a modest way. It's cold and will be for a while. No one will see his feet but us at home, so no worries of teasing or criticizing of him or my parenting skills. I paint his big toenails and then those of his little brother, who refused to be left out of anything his big brother was doing.

"I have sparkly toes! My toes are sparkly!" he says, studying them carefully. Then he decides that he doesn't like sparkly toes, and that's fine. At least I gave him the opportunity to test it out. If it's within reason, I will always let my children test things out. Given the chance, most often, they will make the decision that everyone really wants them to make. Out of repression comes defiance. It pays to remember that the next time your son asks to play with a "girl" toy or your daughter refuses to wear a dress.

DIE-ting! Again! But this time I mean it!

Sheesh...how come my pictures always make me look fatter than I really am? I mean I know the image that I see in the mirror of this thick yet shapely and well held together woman has to be the real me, not the swollen chick in the pics with the cheeks so puffy she looks like a squirrel hiding nuts for the winter. But, just in case I may be delusional, I've embarked on yet another diet. But this time I'm going to make it work. Really, I am. I promise! (Crossed fingers don't count if they're behind your back, right?)

All kidding aside, it's the holiday season and I've been known to gain, like clockwork, about 10-20 pounds from Halloween to Valentine's Day. I'm attempting to stop that shameful trend this year. Right now I'm having the breakfast that seems to be standard in every diet I've ever tried - a black cup of coffee - and repeating the mantra "Nothing tastes as good as thin feels". It's not working. Krispy Kreme, I'm sure, would taste as good. So would a double bacon cheeseburger with lots of ketchup. (See how my brain hates me?)

How do you lose weight? What motivates you? What do you say to yourself to keep it off? I'd love to know. I've been dieting for more years than The Who has had farewell tours, but obviously I have not found my answer. Post in the comments below and wish me luck! I'll keep my progress posted here...when there is any. =)