Our son, Brian, age 13, was diagnosed with Asperger's Syndrome at age 8 after a long eight years of ups and downs. By age 6 (Kindergarten), Brian had been diagnosed as milk protein allergic (not lactose intollerant), undergone 11 ear tube surgeries (2 a year since 6 months old), a tonsilectomy and adenoidectomy, 2 root canals due to lack of enamel due to chronic antibiotic adminstration due to chronic eustacian tube defects (had to have anesthesia to perform). He had already seen a team of doctors. We thought it couldn't get any worse. We were wrong.
Once Brian started school, there was an almost immediate response from school staff that our son was different. He couldn't focus. He was hyperactive. He didn't play in social groups. We took him to a pediatrician who determined that he was ADHD. A pediatric psychologist also determined he was ADHD. So we started 'trying on meds.' He took meds that caused hysterical fits. He took meds that didn't seem to work at all. He tok meds that sent him into his own little world. He took meds that caused tics and stutters. He took meds that made him feel better. He took meds that made him feel worse. It would be 3 years of medication adjustment.
Once Brian reached 2nd grade, it was obvious that he had learning disabilities. The school said his IQ was 70 and that he was in mental retardation range. Our son is highly intelligent and exhibits higher level thinking that some adults don't even exhibit. This made no sense. The pediatrician was not sure what was happening. The otolaryngologist felt that because he now had bilateral hearing impairment that he was shying away from social groups because he could not hear them. The teachers thought he was stupid. The principle thought he was a pain in her rump.
We finally took him to be evaluated by a developmental pediatrician who determined that Brian was the most complex case he's ever seen. Brian has ADHD, dyslexia, dysgraphia, central auditory processing disorder, and yet to be discovered issues at this point. We take him to a neurologist who says he's dysmorphic and likely has Fragile X Syndrome. Brian undergoes Karyotyping, metakaryotyping, and testing for Fragile X to the tune of almost $4000. There is nothing wrong. The neurologist assesses him and determines he has Asperger's Syndrome.
By this time, Brian has also developed bilateral cholesteatomas and was back in surgery. He had more ear tubes placed. He had reconstructive surgeries. He got fitted for hearing aides. It was also discovered that he had amblyopia - so off to the opthalmologist we go for glasses.
He is friendless in school and starting to dislike going. We move into another district. A district that is supossed to be terrific for accepting children with disabilities. It was 4 years of pure hell. Brian slips deeper and deeper into depression and exhibits non-stop anxiety. He decides he doesn't want to go to school or participate in life anymore. We start him on antidepressants and antianxiety meds per the pediatrician and have he see a psychologist who determines he has moderate to severe Asperger's Syndrome, depression, anxiety, and OCD. She see him for 4 total visits before the insurance company decides that it is not medically necessary to continue and that since he was diagnosed with Asperger's, that they will not pay for any services related to the diagnosis: therapy, neurology visits, develomental pediatrician visits. With therapy at $350/hr; neuro visits averaging at $500/visit; visits to the developmental pediatrician totalling $1500 for 2 visits; and the $35,000 we've paid out of pocket for all of his medical bills related to his ears - we can't afford to do anything for his Autism Spectrum Disorder. We stand by helpless and hopeless.
We decide to remove Brian from school and homeschool. Then we decide to investigate Autism services in other states just as my husband is interviewing for a job in Cleveland. He is then asked if he would be willing to move to PA. After we discover what is available in PA for Brian - we put our brand new house up for sale and move the family to PA. Hubby accepts job and I quit my teaching job. We move into a district we've been told is good for Autism services.
Here we are now. Brian does not want to go to school. Every morning we experience mega-meltdowns. He's back on antidepressants and antianxiety medications. We have an appointment to see a pyschiatrist. He is depressed and anxiety ridden 99% of the time. Life is miserable for him and us. We don't how to help him. He doesn't understand why we can't make it all better. And no one - the school, the docs, some of our own family members.. don't know what to do with him. They are all puzzled by him.
I look at his kind face and wish for the days before he started school when he was seemingly happy and carefree. Now, he has worry lines. He is hypersensitive. He doesn't want us to even touch him in the mornings. He screams for no apparent reason. He stays up all night long. He is completely disinterested in school and schoolwork. He is failing all subjects. He has no friends. He hates life.
My son is the most caring, compassionate child. He is being thrown away by our society because he's different and no one knows what to do wth him. No one can give us answers or help us - but there are several who are willing to point the finger at us and blame us for his problems. Family members who have absolutely no idea what daily life is like and think that just spending more time with him will snap him out of his depression. Teachers who think we baby him or let him manipulate us or don't bother to help him with his schoolwork.. Doctors who think we should have MORE genetic testing and see MORE specialists. (And we keep doing it.)
Where is the compassion? What is happening to these spectrum kiddos? Either their parents can afford alot of treatments to help recover them or their parents are stuck and watch helplessly as their child slips farther and farther away from them. I can tell you that my husband makes a very nice salary - yet we've never in all of our years of marriage been on vacation. We've never bought a new car. We have never bought furniture that we didn't have to put together. We don't have oodles of expensive toys. Our kids don't have lots of clothes or things. Most of our money is spent on healthcare. We're glad to do it for our son - but we aren't getting any answers.
Our life is hard every day. We're all feeling the effects. Brian doesn't sleep. I don't sleep. DD is acting out. DH has a short fuse. Thank God we love each other and our family so much. Not many marriages could survive this. Our kids mean the world to us. And Brian is our whole life. I pray each day for God to stop the pain for Brian - to give one friend... to give him self-esteem... to take away the depression for him.
We have no choice but to think positively. To keep searching for answers. To keep pressing for legislation. To keep trying to help our son. To keep trying to educate family members, school staff, neighbors, and society. Our son is worth every bit of energy.
Sorry for the vent... sometimes you have to just let it all out so you can have a more productive and positive day. To all parents of kids on the spectrum: God Bless!
Our Life on the Spectrum
Admittedly, I am addicted to scrapbooking. Unfortunately, scrapbooking supplies are not a necessity (at least not to my husband or people wishing to eat, enjoy electricity, or put clothes on their back - go figure) when the economy is in a downward spiral. But I have found a loophole! DIGITAL SCRAPBOOKING!! I will never give up my Sizzix, die cuts, adhesives, stickers, papers, ModPodge, and such - BUT I can digiscrap for a fraction of the cost of paper scrapping. And since my family is on a really tight budget right now, this is a good, inexpensive, creative way to preserve our family memories.
So it came to my attention this week that my kiddos are always plugged in. -Especially my 13 yo son. If he's not on the computer, he's playing Wii. If he's not playing Wii, he's playing on his DS. If he's not playing on his DS, he's listening to an iPod. Even my 3 yo plugs in. She will play Wii. She LOVES to play preschool games on the internet with mommy. If she had her own iPod, she'd be boppin' along to it. While there is nothing wrong with our tech-savvy kidlets (this is a necessary evil in a society that requires you utilize any and all technologies available to you), it concerns me that we aren't teaching our children the simple pleasures. Last night, we turned OFF the TV! Gasps gallore in our household! We turned off the computers. More gasps! We challenged our family to unplug and enjoy a tech-free evening. DH played Candy Land on the floor with the 2 kiddos in front of the fireplace while I sat next to them enjoying the game and knitting. After the game, DS picked up some yarn and started knitting while DD was playing with her dollies. DH and I talked about our week. It was so nice. It was surprisingly quiet. We want this to become a healthy habit. Afterall, we don't need our children being so wired that they are unable to unplug and wind down. It's important to teach our children how to relax. There are other ways to stimulate their minds and hearts. I think we sometimes forget that we survived without the internet, video games (my parents couldn't afford Atari), 500 TV channels, cell phones that download music, organize our day, and browse the internet, and non-stop modes of communication. If I wanted to talk with a friend, I walked over to their house and asked their mom if he/she could play. If I wanted to watch TV, I knew I had to share with 4 other people in my family and that I was going to be the remote control for my family. If I wanted to play a game, I pulled out a board game, a deck of cards, or grabbed the kickball and headed out into the neighborhood, recruiting participants.
Gotta crafter in your life? Crafty Gear offers gifts with a craft motif. There are OODLES of crafts and designs to choose from. You can have these designs put on T-shirts, mugs, posters, and more. Here are a few of my favorite designs:
Do you have a craft addiction? If so, what is it?
And as requested, I am passing along this award to: The Happy Mom, Sunshine and Lemonade, The Blessed Nest, and Domestic Chicky! I will definitely have to pass along an award to Mamarazzi - her site is just awesome!
What are you thankful for?
Ms. Maddie participated in the Babies R Us Holiday Fashion Show today! She got to dress up in a gorgeous holiday gown (cream colored with champagne and brown embroidery and brown velvet trim) - which she got to pick; have a photoshoot in her beautiful dress; and walk the catwalk. It was a really wonderful experience. And as payment, the store gave her a Candy Land game!! {{{{Her first paying gig}}}} I digiscrapped the photos from Kiddie Kandids and posted them to my digiscrap blog, Scrap Paper Scissors.
Bella is willing to give up her life as she knows it for Edward; to become a monster if it means she could be with him forever. Have you ever felt a love/bond so strong?
No doubt you've hosted or have been invited to a Christmas Cookie swap. Heck, 2 years ago I combined my love of cookies and scrapbooking and hosted a Cookie Swap and Scrap (we all scrapbooked the recipes we collected from everyone into a Christmas Cookie scrapbook). But this year, why not organize a kiddie cookie swap?
So I was over at MomLogic yesterday when an article that was posted caught my eye: Get a Boob Job on Your Lunch Break. Needless to say, it piqued my interest so I started to read the post. Apparently in Europe, women are using injectable fillers (Macrolane) to enhance their 
If you could have any cosmetic procedure free of charge, which procedure would you have? Or wouldn't you?
The folks over at The Lollipop Book Club offer a unique gift idea for children ages 2-12. You can send a child the gift of a good book and sweet treat by selecting a single gift, 3 month, 6 month, or 12 month package in either paperback or hardcover. The books can be selected from a wide range of authors, including:
Growing up, what was YOUR favorite book?
I read 'Dandelion Cottage' when I was 10 years old. I had checked it out of the limited library our teeny Christian school had and I fell in love with it immediately. Such a cute story for any young girl to read. 
'Little Women' was a book we had to read in 5th grade for a book report. I'm so glad that our school was forceful in making us read classic literature. Thanks to that same teeny Christian school, I read so many classic novels that kids in public high schools didn't even read. I read 'Little Men' soon after, but it failed to impress me as much as 'Little Women.'
For the evening, I made homemade grilled cheese sandwiches (complete with 3 cheeses: provolone, swiss, and colby jack and a butter-Laughing Cow Herb spread) and tomato-basil soup. Nummy! We all chipped in and cleaned up the kitchen and retired to the living room for the remainder of the evening.
What is your perfect family day? This can be a day you've already had or a day you wish to have.
