Sunday, December 19, 2010

All I want for Christmas....

Okay I admit it. I am one big kid at Christmas time. I can't wait for Christmas morning to get up and open all my presents. Even though I know a lot of what my family has gotten me I still get excited. This year we are going to my family's house for Christmas. We are leaving Tuesday evening and won't be back until January 3rd. I love visiting my family it is so much fun. I plan on getting a lot of "girl" time with my mom and sister. Going out shopping, having lunch and hanging out together.  The nice thing is Matt is so super when we are visiting my family. He lets me come and go as I please and doesn't mind taking care of the kids the majority of the time. It is my vacation from my job as a sahm. :) So I'm sure you can see why I'm so excited. :)

We recently switched Joshua's medications and part of me was what was I thinking right before the holidays to play with his meds but is there ever a good time to do that. I'm torn. I can't tell if they are helping or making things worse or about the same time. He is definitely more engaged during the day and not so to himself which is good. Regardless, he can act how ever he wants during the holiday break. I'm not going to worry about it.

I keep asking the kids what mommy should get for Christmas and Emily insists that I want a glue stick and glitter and Joshua insists that I want the new Lego Indiana Jones game for the xbox. It's nice how well my kids know me. Of course matt asks me what I want for Christmas and he's clueless even though I gave him specific things I wanted. Heck, Eliz my mary kay lady and friend is holding stuff aside for "me" and matt just has to go next door and talk to her.

To all my friends and family and strangers who may read this blog, I hope you have a happy, healthy, blessed Christmas and New year. :)

Monday, August 16, 2010

No one said it would hurt this much

When I got pregnant with Joshua we were ecstatic. We dreamed of all the happy days of playing and discovering and enjoying the spirit of a child.  Everybody told us how blessed we would feel and how much joy children bring. Nobody told us about the heartache and pain that comes with raising a child. I never knew I would worry this much. I've only had Joshua with me for 5 years and I can already tell that it won't matter if he's 5 or 85 the worry will never end.

He started kindergarten a few months ago. It started out well enough the first two weeks, he walked in no problems, no tears and no tantrums. I knew in my heart this would not last. Yet, I remained hopeful that everything I knew about my son changed. Unfortunately, my heart was right. Once he realized this whole school thing was ongoing the tantrums and fear took over. No longer were the morning drop offs easy. No longer did he walk in without a second glance. He refused to get out of the car and I had to start walking him in. I would get him to class and he would completely breakdown as I would leave. I could hear him screaming for me all the way down the hall. What's a mother to do except shed tears. Hearing the pain and fear in his voice and knowing that I had no choice but to walk away was excruciating. It doesn't matter that everyone assures me that he is okay within a few minutes and the rest of his day is good and his work is good and he participates. All I remember is those few minutes where he's pleading, screaming, crying for his mommy not to leave. I've been dealing with this for 3 weeks now and my heart breaks every single day. All I want to do is just take him in my arms and sit down with him and cry with him.

We signed him up for before school so he could go in about an hour early and play before class started. He cries when we drop him off but at least he's not breaking down in front of his entire class and when class is ready to begin he is adjusted and calm and walks from the gym to his class with no problems. The other positive is Matt takes him on the way into work. I know my heart can't handle hearing him cry every single day.

It has carried over to other parts of his life. Now when I go out occasionally in the evenings, which I have always done and it's just part of our family routine he has meltdowns because I'm leaving. One night Matt said he cried for over 20 minutes before he could get him to calm down. I try dropping him off at Sunday school, something he's always been accustomed to and he breaksdown as I leave.

I worked in his sunday school class room yesterday and I have never really watched him in a classroom setting because I don't want to disrupt his routine. The entire time I just watched him and analyzed everything he did. I noticed how quiet he was and I could see the uncertainty in his eyes. During part of the class there was a video where it encouraged participation like stand up and jump with us. At first Joshua stood up to participate and about half the class was participating and half stayed seated. He looked around and saw that some stayed seated and he sat back down again. I notice everything about his behavior and that is not a good thing. Maybe that's why I don't participate and volunteer in his class because by the time I leave my heart is in a million pieces again.

No one said it would be easy. But no one said parenthood would hurt this much.

Saturday, July 24, 2010

Sign my petition to outlaw balloons :)

It's Saturday and Matt being the madman that he is signed up to cycle 67 miles in some sponsored event somewhere. I don't pay much attention to details. Sorry honey. So that left me alone with the kids. I should have just bunkered down in the house and let the day slip by but NOOOOOO.....I decide to take the kids to Mcdonald's to see the fire truck and eat lunch and get a free ice cream cone. Sounds simple enough right :P.  Nothing is ever simple when it comes to my two kids. We saw the fire truck. The fire man didn't have much personality but hey he runs into burning buildings, who am I to nitpick. Plus it was really really hot so kudos for being out to entertain kids.

We went inside mcd's and had lunch. Well I ate lunch the kids just stared at their food while they played with their toys. I'm in a decent mood at this point and I"m like oh the hell with it yes you can still have ice cream. I got ten minutes of quiet while they ate ice cream and I browsed the internet. I love my iphone. Well on the way back to the car they were handing out balloons at the fire truck. Having a complete lapse of common sense I let the kids each have one. Of course they way they were cutting the balloons out of the bunch left very little string. About 1 foot long. We secured the balloons on each child's wrist. Everybody is happy.

I think okay I can run into walmart to pick up my photos. It's a quick errand no browsing just get my photos pay and run. The kids wanted to take their balloons with them. I cave and figure they are secured to their wrists they should be fine. We get into walmart (which I despise and never ever go to unless I have a very good reason) unfortunately, I didn't have a good enough reason to deal with the following. I usually get my photos printed at Walgreens but decided I wanted to see a Luster finish v. a glossy finish so I sent my prints to Walmart. I assumed that the photo center would be at the front of the store...wrong...I trek all the way back to the store, stopping every couple of seconds to threaten my children if they don't start listening. Emily fails and I have to strap her in the cart. Commence crying. I make it back to the counter and the lady is just standing there at a back counter. She looks up at me occasionally and I really want to be a smartass and get her attention but I kept my mouth shut and waited patiently for her to come up and help me. She hands me the photos and I was like can I pay for them here and she looked bothered by this but whatever I was not going to STAND in another line with my kids. So I check out and then I hear Joshua wail, "MY BAAAAAAAAAAAAALLLLLLLLOOOOOOOOOOOOON"

Crap...the balloon is at the ceiling. No hopes of recovery. So I'm just trying to get out of the store with my sanity. I have emily and joshua now crying with constant wailing from Joshua about his balloon. we get to the exit and the crazy greeter lady asks if they want a sticker. I wanted to say Are you kidding me? Can you not hear them? But I just said no thank you and bolted out of the store.

Joshua wailed about his balloon all the way home and only has quieted down about it in the last five minutes.

Matt should be home in about 30 minutes. I already told him it will be a revolving door as soon as he steps in this momma is stepping out. My only salvation tonight is plans to go to Archiver's to scrapbook (hence why I needed those stupid pictures in the first place).

The end.

Thursday, July 1, 2010

For the sake of Heather....

Okay I got razzed last night by my friend for not updating my blog. So here's the update. Same shit....different day. :) How do you like that.

We spent the last month doing a lot of traveling. We spent a week in myrtle beach then we were home for 4 days and then we headed to Indiana to see my family for a week. We were definitely ready to be home. Traveling is great but not all bunched up like that. Joshua starts kindergarten in less than 2 weeks. How did he get so old on me. He's my baby. He has a big birthday party this weekend and apparently he only wants "brothers" there no "sisters". Ahh the joy of boys. I showed him what his cake was going to look like and he requested a different cake. I may strangle him before the end of the week. They are in summer camp this week, I've wasted every morning doing nothing. Today is the last day of summer camp. Next week I have a full week with the kids all to myself. It will be great. (insert sarcasm).

Oh and for the record, potty training still sucks. My daughter will be in diapers at college and if you are looking for a good stock tip, I recommend you purchase stock for Tide Laundry Detergent. We are definitely keeping them in business.

There it is, my not so exciting life on the spectrum.

Wednesday, May 19, 2010

Snack time drama

Okay here's today's challenge. Go out to the store and purchase your child's favorite treat, for example Simply Fruit fruit rollups (dye free in case any one is looking for dye free variety). Get home and listen to your child ask, plead beg, for fruit rollups for snack time. Now for the tricky part, open the fruit rollup and remove the sticky messy stuff from the plastic but whatever you do DO NOT TEAR IT. If you do plan on spending the next 30 minutes consoling your child and trying to convince them that the fruit rollup is not ruined. ;)
Other items this may apply to....never ever break a banana in half, if the popscicle breaks for get it it's ruined, Never cut up their pancakes or sandwiches, and be especially careful when taking granola bars out of their packages without breaking them. 

Today's Living Life on the Spectrum Moment was brought to you by Simply Fruit fruit rollups.

Thursday, April 29, 2010

You can't scare me, I'm a mom.

You've seen the t-shirts, especially if you are on Triangle Mommies and let me tell you that is mostly true. As moms we take a stand and don't ever let the mama bear out of the cage that is just bad news on everyone's part. Moms aren't easily intimidated and we tend to know what's best for our kids. We pride ourselves on knowing what is best for our children.

But there is nothing like entering a room of "experts" that surround you and tell you what your child needs in a class room environment to make you second guess everything you thought you knew. If you don't have a child with an IEP consider yourself lucky. You don't have to put on the full set of armor to fight for your child. Kindergarten is an exciting time for kids who are typical. First, you get to talk a lot about it and they will ask questions and will be very excited. You worry a little but in the end typical johnny will be just fine, kindergarten is a milestone.

For those with special needs kids, kindergarten is especially scary. It sets the tone for the rest of their academic careers. Will the teachers understand his needs and meet them. Does the school really care about what's best for your child?Will the kids notice all of his quirks and still like him or will he be "that" kid that they avoid. Will they actually follow what is written in the golden IEP. Joshua is going to have a hard transition and really struggle for several months as he learns a new routine. I want to go hold his hand and help him through it like only a mommy can but I have to let go.

His IEP meeting was on Tuesday. I've spent the last few days processing everything that happens. It really is amazing how intimidated they make you feel when you sit down. I had a friend with us who was our parent advocate (she did a great job) and his current therapists and 4 people who did not know him from his new school. 12 people in total.  There were several times during the meeting that we were shouting (not really but you felt like it) he needs more resource time and he can't be pulled out you have to go in the classroom and work with him. In the end we compromised and ended the meeting with the understanding that 4 weeks into school we will be meeting again to review his IEP. LIke I've told many, I don't feel victorious but I don't feel defeated either. All I can do now is rely on God and know that he has it all under control and just trust that as long as I'm in there advocating Joshua will be okay.

His school is year round and he was placed on track 2. This is good for him there will never be more than 3 weeks out from school so less likely that he will regress. He will start school on July 9.  He has three weeks left of preschool. After that we will have 7 weeks together before our world changes forever. How quickly it does pass.

Monday, April 19, 2010

Just stay positive :P

Well, I'm a little over a week away from Joshua's big IEP meeting. We are transitioning out of preschool services and jumping into Kindergarten. Yes, that is right my sweet little baby will be starting kindergarten this year. I'm torn between excitement and nausea. If I think about it too much I get overwhelmed with nausea. How is it possible it is time for this. First off when he was born I looked ahead and figured out when he would start Kindergarten and it was 2011 not 2010. I decided that he would be held back the first year because he would be one of the younger ones and I wanted him to be older and more mature. I still feel this way! However, because Joshua has autism and relies on services through Wake County I am being forced to put him in Kindergarten this year, otherwise, no services. So here I am preparing for the inevitable my big boy starting kindergarten. It's scary I won't lie to you. I don't know how I'm going to handle it.

But the first step is the big IEP meeting. Two important things are going to happen that day, one we are going to figure out all the services he will get. Secondly I will finally find out what track he has been assigned too. We have a lot of plans made for the summer. They are all set up so if we need to cancel we can but I really don't want to cancel any of them. I am way too excited about them. So I am hoping for track 4.

I have a friend who is going to the meeting with me to help advocate for Joshua. She recommended that I prepare a positive profile on Joshua outlining his strengths. If for no other reason but to remind me of everything positive about him during the meeting because being in these meetings where deficits and negative things are discussed it can really bring you down.

Sounds easy enough huh. Well, I'm struggling. Some of the things I think of don't really mean much in the educational aspect.

For example, He's great at giving hugs and he is so cute in the morning when he first wakes up and forgets that he prefers to annoy his sister and instead talks sweetly to her and shares and really takes on the nice big brother role. Later in the day, he remembers that torturing her is so much more fun. :)

He is adorable when he gets excited over something and starts flapping his hands. Which reminds me, I just ordered a shirt for him that says "I get flappy when I am happy" I can't wait for it to get here.

So here I am trying to htink of his positive things like problem solving and how well he does with puzzles. His pretend play is emerging, he was walking around some patches of dirt that matt recently spread grass seed on and I asked him what he was doing and he said he was "pretending to water the grass!" He is initiating more conversations with his peers and you can see in his eyes that he loves his friends and tries so hard. I'm actually going to have to rely on other poeple to actually  help me with this profile because they see things I don't. I'm not sure why but they do. I guess I'm so caught up in the day to day struggles and trying to get through the afternoons where being locked out of my house is just part of the routine. I have learned to carry my keys with me. So always seeing his strengths is difficult.

For now,  all I can do is my best and hopefully that will be enough for Joshua to succeed.

Sunday, April 11, 2010

The Camping trip

Okay it's been a few weeks since I last blogged. I think about blogging. I even have funny stories in my head that I want to share but by the end of the day after I pulled out my last hair and got the kids to bed and the laundry done, the kitchen cleaned and the house back to normal I can't for the life of me remember what was so funny.

Matt and I love tent camping. We used to go all the time when we lived in Maine. We have really cool gear from L.L. Beans and awesome gadgets and stuff. We like to rough it to an extent. As long as there are bathrooms and showers withing 500 ft of me then that's all I need. Oh, and a cooler with lots of food and snacks. Flashlights are good too so I need those as well. Marshmallows and hot dogs. Lots of blankets and warm clothes and fire wood for the fire. Oh yeah those little metal sticks to use for roasting said marshmallows and hot dogs. And comfy chairs to sit in by the fire.  Oh wait, I need my Iphone, books, music, and air mattress. Okay, that's all I need, really. (I'm sure I'm forgetting something ;) ).

So we set off this weekend for our first camping trip with Joshua and Emily. We went last year but it was a disaster for several reasons so we'll call this our first official camping trip with the kids.

Here's how it went. We got to the camp site and Matt fixed up the camp while the kids played nicely together and we all sang Kumbaya by the campfire and roasted marshmallows and stayed clean. Nobody fought and everybody did exactly as they were supposed too. The kids sat at the picnic table entertaining themselves while me and Matt relaxed by the fire having nice conversations and listened to soft music and the sounds of nature all around us and we all just soaked it in. 8pm came and it was time to gather the munchkins for bed and they hopped happily to the tent and put on their pajamas and went right to sleep. Such angels. Matt and I sat by the fire and shared a romantic evening together. It was beautiful. We climbed into the tent after the fire went out and crawled into our snug sleeping bags and cozily slept until 7am the next morning. The best sleep evar.........okay....wait....who's writing this bullshit? Oh my bad....that's HOW I PICTURED IT IN MY HEAD BEFOREHAND. :)

The reality of the situation was we had a lot of fun but it was exhausting and a lot of work. The kids did fairly well although I thought I was going to strangle Matt every time he told them to stop doing something or not to get dirty. Hello, woods + kids = dirty....get over it sweety. 

Most of the evening was spent reminding the kids to stay away from the fire....joshua you're too close....emily what did we just say. The fire is hot get away. Sigh....repeat.  The kids were exhausted and went to sleep pretty easily on Friday night. Matt and I stayed up until about 10 and then crawled into the tent. The kids slept on pallets on either side of our air mattress. Hey they are little they can rough it ;). Matt and I have really really nice sleeping bags that are rated for -15 degrees. I have come to a realization (although matt says he was quite comfortable and even sweaty at times during the night) that these temp ratings only mean that if it is cold out and above -15 you won't die, you may still be cold, it's not gonna feel like you're sitting by a fire but hey you're not gonna die of a little cold right. Ugh. So the whole night I was freezing.  I was all cocooned in my mummy bag and shivered most of the night. I was worried about the kids although they had lots of blankets and stuff on them and Joshua slept like a log. Emily got up at some point during hte night and snuggled into daddy's sleeping bag which was all nice and toasty. (note to self-lose weight so I can fit into Matt's sleeping bag too for next trip).  I woke up every hour counting down to the time the sun would rise again.

The problem with me and being cold through the night is it makes me have to pee. Right here Right now I will tell you at 2 am in 40 degree weather I was praying really hard for a penis. Men are so freaking lucky.  I held off for as long as I could and around 2:30am I couldn't hold it anymore and had to get out of the tent and walk the 500 feet (felt like a mile but it wasn't too far up the road) to the bathrooms.  I stumbled through the darkness to the restrooms and walked in. OOOOOOOHHHH....the bathrooms are heated.....the thoughts that ran through my head at that moment. How wrong would it be to grab my sleeping bag and camp out in here......okay gross but the thought did cross my mind ;). Like I said it was freaking cold. I do my business and sit there for a few minutes thinking about the cold walk back and reminding myself that no you can't stay here all night. I get back to the tent and suffer through the next few hours. Finally, it's time to get up. We survived the first night. I thought for sure we'd give up and pack up a few hours later and leave but nope we persevered.

Saturday was a great day. It was absolutely beautiful out. The reason we planned our trip this weekend was to coincide with an event held at Camp Royall, a campground owned by the Autism Society of North Carolina. They were having a family fun day for families who have kids on the spectrum. They had a bbq, open gymnasium with all kinds of games and activities, an art center, a zip line for the kids, hayrides, and more. Can I just say right now that I think the NC Autism Society is awesome and do a fantastic job supporting families in the area. They host summer camps at Camp Royall every year for kids on the spectrum. It is expensive but it's 5 nights with a 1:1, 1:2 ratio for the campers and although Joshua actually is old enough this year, he's still too young in my eyes to send him off overnight for a week although tempting. So now I day dream of the day when that will happen, plus I need to start my piggy bank fund so I can afford to send him there. He had so much fun doing the games. The zip line was awesome and both Emily and Joshua rode on that. The only part he hated was when we went to the campfire sing along. He doesn't like singing songs. Oh well. They are hosting it again next month so we are going to do this whole camping experience over again.

That afternoon we headed back to our camp site and got the kids in their swim suits and headed to the beach. The weather was perfect. The kids had fun and loved it. We roasted hot dogs and marshmallows and hung out around the campfire and it was nice. That night I stayed a bit warmer and I had matt help me really cocoon myself in my sleeping bag and cinch (is that a word) the head part and zip it as high as it went. I was completely buried inside the sleeping bag. I even lasted until about 4:30am before I had to pee and the only problem was I couldn't get out of the bag. I was in there really good. Finally after wrestling with it and flopping around like a fish out of water I was able to get out. Although I stayed warmer that night I was happy when Matt got out of bed first with Emily and started a fire. By the time I got out of the tent Matt had a wonderful fire going. :) I sat by the fire until about 10am before I was warm enough to move around to help pack up camp. Matt got motivated to pack up around the same time but his motivation was his Iphone battery died. Guess that signaled the end of our camping trip. ;).

We had a good time and lots of good memories and we are crazy enough that we are going to go back next month and do it over again. 

Sunday, March 21, 2010

But I neeeeeeeeeeeeed it.......

says the little boy who had his Popsicle taken away.

4 hours earlier....

I have a head cold, I don't feel well and this day has been way too long. Matt goes out with friends on Sunday afternoons and he doesn't get back until after 6. I really have tried to make the best of the day despite feeling like crap. Emily went down for a nap. Yay one less kid to deal with for a few hours. Joshua on the otherhand asked me if I would build legos with him. He has recently acquired new lego sets. These are a new chapter in our lives. We are talking about the lego sets that actually make something and come with 100 microscopic pieces. I hate doing legos I'm not good at it. It's a daddy/son project. But he did put away the puzzle pieces without much prompting and then he came over and asked in his very sweet voice, "mommy, I put away the puzzle can we play legos now" Of course, I'm thinking noooooooo but against my better judgment I agree. So we pull out the instructions for the helicopter. Thankfully Legos is smart enough not everybody has a knack for looking at a picture and duplicating the creation. The step by step directions are decent so I charge forwrad to recreate the really cool rescue helicopter in the picture. It is a detail oriented project and requires concentration and an eye for detail. Something I normally have but today my head is pounding. Well, half way through things start going downhill. I go to put a piece in and 4 other pieces fall out so I have to backtrack in the directions and figure out where they went. I've spent an hour on this stupid helicopter and I just had to give up and I was practically in tears because it was so frustrating. So I picked them up and put them away despite the protests of one little boy who says, "but I can do it". No you can't not without my help and I have no patience left.

So I'm supposed to wake emily up at 4 and some days I'm good at this other days I let time slip by and think 5 more minutes won't hurt. I finally went in at 5 and woke her up only to find that she peed her pants and all over her bed. Potty training sucks.

So it's snack time and I'm a pushover because I'm sick. :P So they asked for popsicles, sure whatever. Well Emily is standing on one side of the table and Joshua is on the other side sitting on the couch. Out of the blue he walks over and slaps emily across the face. So I get up and take away his popsicle and throw it in the trash.  Well this was the end of the world for Joshua. I have him sit with me and I talk to him about hitting and now he lost his popscile because of what he did. He got up a few minutes later went over and apologized to Emily and asked if she was okay. Then he returned to me and said, can I have my popscicle back. Ummm. No you hit emily. It's been 45 minutes and we are still tantruming and throwing things and now kicking emily because he "NEEEEEEDS his popsicle."  Discipline does not cure autism but I sure wish it would help deter some of his behavior.  The loss of the popscicle now means the rest of my evening will be spent fighting with him and keeping him from throwing things and breaking things and destroying my house. Nothing I do will stop his behavior. Time outs don't work, spankings don't work, locking him in his room is just a disaster waiting to happen, loss of toys don't work. Nothing works. SO now I'm left thinking I have a long evening ahead of me, maybe he does just need his popsicle. But I'll stay consistent even though tomorrow it won't make a damn bit of difference because sometime during the day when all is calm and all is bright, he will walk over to Emily and just hit, push or slap her and the whole stupid cycle will just repeat. Welcome to my life on the spectrum.

Now I have the hiccups and evertime I hiccup emily asks if I'm okay. Daddy's home so now I can escape to my bed and cover my head and pretend all is good in my life.

Thursday, March 18, 2010

An absolute MUST READ

Shifting Focus: 8 Facts About Autism the Media Is Not Covering

Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:

1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.

3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.
That's why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.

2010-03-16-NotMyBoy2.jpg5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.

2010-03-16-MBCCover2.jpg6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.

So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four

Clutter oh Clutter

Okay, we live in a small house. I am so overwhelmed by the clutter. Part of me just wants to go through and dump everything we own and donate it and start over with a clean slate. We have too many things. Too many toys, too many clothes, too many things in the refrigerator, too many coats, too many socks ( I kid you not, I cleaned out matt's sock drawer a couple of months ago and he had over 50 pair of socks and he gave me grief for getting rid of half of them, my husband is a keeper of things). I don't know how to go about doing this decluttering process.

So I am so overwhelmed and don't know where to begin so I continue procrastinating and hoping the declutter fairy will show up soon and take control (that's you eliz r. ) :) So instead of tackling this project, I am sitting on my computer with blinders on (unless Matt is reading then I am busting my butt around this house doing stuff and lucky to get a break from all I do).

We have jumped on the potty train wagon with Emily (again) apparently she is a top notch potty goer at preschool, tells her teachers that she has to go, etc. Not sure who this child is because at home she insists on remaining a baby and wearing her diapers. So for the second time I have given up on her diapers and put her in panties. So long diapers forever (maybe we'll see how this week goes I may get lazy again and throw in the towel).  It's hard to focus on her potty training when I am still trying to convince my almost 5 year old that he needs to stop pooping his pants and to use the potty and for the love of God please stop stripping down in the back yard and smearing poop everywhere (  <--- this is the living life on the spectrum part in case you were wondering ). So you can see why I'm not that excited to jump on the potty train with Emily, although I know she will be super easy but a mom can only deal with so much poop a day, kwim.

Well, I guess I will stop procrastinating and go clean some part of the house so Matt doesn't think all I do is sit on the computer all day reading my Mom message boards and blogging....I'm just way too busy decluttering my house for that kind of stuff ;).