Monday, December 26, 2011
But what made this year so special was the exact opposite - JD didn't hone in on a specific toy or organize them instead of playing - he jumped right in and played "appropriately" as they call in in therapy. See most kids just do that naturally. They get a plane, they pretend the plane can fly. The get a car, they start making racing sounds. But a lot of kids on the spectrum don't do that, JD being one of them. I'm a little bit of an organizer myself, so his OCD about keeping his toys nice and organized makes me secretly smile inside, but this year it was so good just to see him play and have fun with Ashley and Kyle and his two cousins. His favorite toys were still the Thomas trains, but he also loved his new bounce house, motorcycle, and Cars racetrack. It was really such a wonderful feeling to watch him play.
Here's my post from Christmas 2010. I can't wait to see what next year brings for JD!
Sunday, December 18, 2011
When you have a child with special needs, it's really hard to feel like you fit in anywhere. You want to do things as a family, just like other families do, but often times when you go out you feel judged, or looked down upon.
For example, when JD is having a bad day and is laying on the floor throwing a tantrum, it's really hard for me to ignore the stares from parents across the room wondering why my four-year-old is acting like a two-year-old. Sadly enough, it's really kept me and Jason from going out and doing things that we really want to do.
One of those things is attending church. We've gone a few times in the past, but the anxiety I would get about it made it such a miserable experience. Dropping JD off in a large Sunday school room with people he doesn't know (and who don't necessarily understand him or his needs) really freaked me out. The crowds, the loud noises, the lack of routine - it all gave me sensory overload so I can't even imagine what it did it him. But today was very different.
About a week ago I was online looking for churches with special needs ministries. Jason and I wanted to find somewhere where our WHOLE family fit in - not just me and him, and our two "neurotypical" kids - but somewhere that would accept and welcome JD as well. I looked at the First Baptist Orlando website and found a program called "Special Friends." It's for children and adults with special needs. They even have a special sensory room! I reached out to their program director, Michael Woods, this week and he was extremely welcoming, so today we gave it a try.
What a success! All three of my kids enjoyed their time there, and JD was in a small classroom with teachers who understood him and made me feel comfortable leaving him with them. Jason and I spent an hour relaxing, and worshipping together, and when we left we both were amazed at how great the experience was.
I'm really thankful that there are programs like this in our community because there are so many families just like ours that have the same need. Our family motto is, "We do things together" and the Special Friends program allowed us to do just that!
If you want more information about the Special Friend program, visit their website at http://www.firstorlando.com/Adults/Special_Friends.aspx. I would highly recommend it! :)
Thursday, December 15, 2011
We arrived at the hotel where the event was taking place and it was FILLED with probably 200 kids yelling, running, laughing, crying - it was total chaos. With Monkey Blanket in tow, JD stuck in his thumb and walked bravely through the masses. Just that moment alone was a huge accomplishment because a year ago he would have been totally overwhelmed. I had to leave him "back stage" with his teacher so Jason and I could go get seats. I gave her my cell phone number just in case he decided it was too much to handle... but no call! So far so good!
Finally it was his turn. His class came out and headed on stage. JD was NOT having it at first. But after cheering him along and telling him I was right there (from the first row of course) he went on stage. The music came on and all his little classmates started dancing. He stood in the back, thumb in, holding monkey blanket, just staring at the crowd.
I was so proud of him for getting on stage, but I have to say for a minute there my heart sank as I watched all his friends singing and dancing along to the music as he stood there. To anyone else it probably looked like stage fright, but to me I just saw his autism. As a parent you just want your kids to fit in, to be like the others, and at that moment it was abundantly clear that wasn't the case. I, of course, was probably the only person who noticed. But I was just trying to take in the moment, watching him stand up on stage in front of this HUGE group of parents, with music, clapping, lights, etc. It was a sensory nightmare!! And he's only 3! But then he really surprised me...
Up at the front of the stage was a microphone used to pick up the voices of the children singing. JD walked right up, grabbed the microphone and started pretending to sing! The crowd laughed and cheered him on and he thought it was so funny. I was really surprised, it was like he came out of his shell on stage. Who knew that my little guy had moves like Jagger? ;-) Here's a before shot in case you didn't believe me!...
Wednesday, November 30, 2011
Tuesday, November 15, 2011
Saturday, November 12, 2011
There are certain people who have come into my life that I consider guardian angels. These are people who have had a profound impact on who I am, who I feel that God sent to me (or vice-versa) when I needed them most.
A little over a year ago I randomly went on Craiglist looking for a part-time nanny that might have experience with children on the autism spectrum. I was freelancing at the time and just needed someone to watch the kids while I worked in my home office. Normally I don't think I would have ever looked at Craigslist for babysitting options, but for some reason that day I figured I'd take a look.
I searched the term "nanny and autism" and ONE result came up. It was for a young lady named Katie and she had moved to Orlando from Wisconsin with a background as an ABA therapist assistant. She was looking for a part-time nanny position and immediately I called.
We must have talked on the phone for two hours that night. I remember sitting in my bed, telling her all about our family and JD's recent diagnosis. Kyle wasn't even a year old yet, not even crawling, and JD was in therapy everyday.
Katie and I clicked from the very first moment - it was like we had known each other for years. Later that week she came over, met the kids and started working for us. At that point in time I had no idea what kind of impact she was going to have in my life.
When Katie started JD wasn't speaking, couldn't run, swing or go down a slide. When you fed him you could only put a few little pieces of food on his highchair at once (NEVER different foods) or he would throw them all over. He would have terrible tantrums, hit, pull hair and scream. NONE of it phased Katie. I had never met anyone so patient and loving as her in my life. We would sit and chat each day and became so close. I learned about her life, she learned about mine and it was like having a best friend spend each day with me and my kids.
Last October I was really sick - I was in and out of the hospital with gallstones. In November I had to have emergency surgery and at 1:00 a.m. Katie drove 45 minutes to our house to stay with our children for three days while I was in the hospital. I never had to worry for a second that my kids were being taken good care of. She knew their daily drill - and all of JD's routines. The most amazing part was that during the weekend I was coming home, we were scheduled to have a huge carnival birthday party celebrating Kyle's first birthday and Ashley's fourth birthday. Katie put on the entire show - organized all of the decorations, the party favors, the face painting, the organization and clean up... everything. I was stuck on the couch, so thankful for having her in my life.
That was a year ago and I can't even begin to list all of the things Katie has done for our family, and for me, since then. She is the one person who has been there, day-in and day-out, right next to me and Jason, helping us raise our kids. She's been with us through therapists, schools, moving, even marriage drama - and never skips a beat. She loves my children like they are her own and they love her just the same. She is like another mother to them and I couldn't be more thankful for that.
Today our family participated in the "Walk Now for Autism Speaks." Katie was right there with our family, proudly walking on behalf of JD. And while I took some pictures of her with my kiddos, it reminded me how blessed we are to have her in our lives.
Katie - I could write a novel about how you've changed my life. Your love, patience, kindness and spirit are unwavering and I can't thank you enough for all that you do for me, Jason and the kids. I look at this picture and it makes me smile knowing that you are our guardian angel - God sure gave me the best one he had!
I love you Katiebug!!! ~Linds
Today was an exciting day, not just because of the autism walk, but because we're celebrating our youngest child's 2nd birthday. Kyle is the sweetest little guy but I can already tell he's going to give me and Jason a run for our money when he's a teenager... he's the dare devil, the rule breaker, and the pretend crier in our family. Gotta love it!
Kyle's 2nd birthday is kind of bittersweet to me because it reminds me that JD was diagnosed the day after his 2nd birthday. Looking at Kyle and his development, it's like day and night of JD's when he was that age. Kyle is such a chatterbox and wants to be in the middle of everything. He's fearless, all boy, wants to wrestle and laugh and is so interactive. The day JD turned two I remember how overwhelmed he was at his birthday party. He didn't talk then and I could tell that he would have done anything to run and hide away from all the activity. I didn't know at the time that it was autism, but now looking back I wonder how I didn't see it sooner.
This is hard to say, but I'm so relieved that Kyle isn't showing any of the signs for autism. I worry each day about it and I probably won't stop worrying until he turns three, by then I think we'll be in the clear. It's also hard to say that I worry about the day that Kyle will be developmentally "older" than JD... I know that time is coming soon as they're about the same developmental age now.
As a parent of a child on the spectrum I feel like just when you think you've conquered one issue, another comes up. But Jason and I are so proud of all three of our little ones and wouldn't change a thing! Happy birthday baby Kyle - I can't believe it's been two years already!
Friday, November 11, 2011
Wednesday, November 9, 2011
Saturday, November 5, 2011
Tonight was a great night. Jason and I took the kids to dinner at one of our favorite places - the Joe's Crab Shack by our house has this awesome pirate ship playground where the kids can run and play while we relax and eat. The funniest part is that I hate seafood, however I go there at least twice a month because it's like free babysitting.
While we were there we randomly ran into some friends of ours who, like us, have three kids ages five and under... pretty uncommon nowadays. I love spending time with them because they aren't even slightly phased when my crazy children and run around screaming. It's almost easier when all six of the kids are together because they just entertain each other.
But the best part was when my friend's little boy, who is the same age as JD, came up and gave JD a BIG HUG when they saw each other. JD smiled from ear to ear and it made my heart melt. Watching JD grow up and make his own little friends just makes me so thankful for the innocence of little children. They don't see his autism, they just see another friend. That is the true definition of inclusion.
When I grew up I lived in a bubble - I wasn't really exposed to anyone different than myself or my family. We were standard upper-middle class WASPs (White, Anglo-Saxon Protestants). I never realized that there were so many different people in the world with so many wonderful things to learn from.
As a parent of three children, one having a disability, one of the goals I strive to do each day is teach my children that there are so many amazing, different people in the world. People may look different, speak in different languages, have different abilities, but at the end of the day I want my children to know that everyone is the same inside - and that everyone should be loved and respected.
So to my friend's little boy... you'll never know how much that hug meant to me, it's makes me so happy to know that you're JD's friend. It's the little things that mean so much! :)
Tuesday, November 1, 2011
I think every mom feels this way at some point in life - when you're in a store, restaurant, walking into daycare - and your kid throws a tantrum and there you are, feeling the STARES coming from all around.... Deep Breath Now! I hate that feeling and when you have a child on the autism spectrum you get it any time you go any where.
I made the decision to take the kids to a fall festival at work last week. I knew it wasn't going to go well, but I figured it couldn't be too bad... LOL. The day started with JD not having ANYTHING to do with his pirate costume, it's that rayon material so I'm sure it totally freaked him out when it touched his skin. Strike 1 - it's ok - I've got Plan B - Halloween shirt with a skull on the front - good thing mommy is always prepared! :)
We get to the festival and there's a guy twisting balloons. JD waited in line patiently and I was impressed. Then came the carnival games... oh lord, I laughed as the nice lady volunteering tried to explain to my three year old son that he had to stand on the taped line to throw the little baggies into the hole two feet away. I let her make the effort, hoping he would somewhat listen, but he just did his own thing, running them up and throwing them directly into the hole... she was fine with it - we're still going strong!
Then comes the face painters... let the fun begin. We ask JD if he wants to get his face painted and he says yes, but when he gets in the chair he FREAKS out as the lady starts putting paint on him. The screaming and crying begins and the poor lady looked at me like, "I'm SO SORRY - I swear I didn't hurt him!" I explained to her that he has sensory issues so he probably hated the feeling of the paint on his face. We moved on... ok Strike 2... no worries, I can handle this.
Next stop was walking through the different "haunted houses" on each floor. Of course I pre-walked them before he got there to make sure he'd be ok and not terrified, that there were no loud noises or people jumping out. We were good to go on four out of five, so off we went. Now - I work on a five story building and each of the haunted houses started when you got off the elevator. JD HATES elevators, so as we got in he cried a little, but as we went up each floor it got worse and worse. Finally at the top floor a lady turned around and asked me, "What did you do to him?" REALLY???? ARE YOU SERIOUS??? That's when I want to hand her a big sign that says, "dumbass - my child has autism - get over it." But I nicely smiled and walked away, saying he doesn't like elevators. Strike 3... ok, mommy is ready to go home.
I feel like this happens in some shape or form every day. But you know what, it doesn't make me mad, it makes me realize just how oblivious people are to the reality that not everyone in this world fits into the perfect little box. I'm just glad that I'm no longer that person. If I see a child having a tough time, or even an adult needing help, I don't judge them for being different. I'm just happy that they're here because our world would be a really boring place if we were all the same!
Monday, October 31, 2011
- JD knows no strangers - he will say hi to the person passing by in the grocery store until that person responds. After about the 5th "hi" with no response, I want to scream at the person, "just say hi back!!" cause he won't stop until he does. He's also a "flight risk" meaning that he has no concept of being lost or hurt so he could run away at any time without the ability to get back.
- He loves to chatter when he's nervous or excited. He'll run up to you and talk to you, but you have no idea what he's saying. They call that "jargon" - it's speech, but it's not understandable. It's like an effort to communicate when he doesn't know what he's trying to say.
- We've finally gotten to the point where he can answer yes/no questions... normally when it's no, it's NO!! (insert the really loud screaming here). But most questions he can't understand - like what did you do at school today? or what's your favorite color? In this instance he'll just repeat the last word I said to him, which is called "echolaila." He does this because he knows I'm asking a question that requires a response, but he doesn't know how to answer it so he just repeats the question.
- He has what's called "food aversions" meaning he's super picky about what he eats. Right now his diet mainly consists of strawberries, bananas, chicken, goldfish and popsicles. He hates cake, candy, ice cream. Luckily he does like sprinkle cookies so we make sure we bring some to parties so he still gets a treat like the other kids.
- He LOVES routine and even though I'm a Virgo who also loves structure, this one drives me insane. Things have to be the same, day-in, day-out. If you change it up, there will be a meltdown, and I'm talking screaming, crying, biting, hitting, skin-turning-red meltdown. Here's an example - our evening routine. JD has to take a bath, watch a cartoon (the exact same one we've seen every night for a month), then we have to read two books - Dinosaur Parade and the Going to Bed Book, then we sing the same five songs, we cuddle and then he can finally get in the bed. If I try to take any of those items out of the equation, or do them out of order, he loses it. We live and die by routine at our house and I hate anything that will make us vary from it. His routine makes him feel safe, so if we change it, it totally rocks his world.
- You learn to expect the unexpected. JD can be thrown off by the littlest things. The other day I was running late to work and I didn't let him stop at the fish tank on the way into his classroom, I tried rushing him and BAM! it's over - he's lost it. On the floor, hysterical, biting his hands to express his anger at me. I felt horrible because I forgot that's his morning routine - he's gotta look at the fish tank for at least a good minute before we move onto the classroom - no if, ands or butts about it, unless you want to ruin the day.
Sunday, October 30, 2011
I saw a post on Facebook this afternoon from the Orlando chapter of Autism Speaks and I realized that the Orlando Walk is just two weeks away! On Saturday, November 12, our family will be out at Cranes Roost Park in Altamonte participating in the annual "Walk Now for Autism Speaks." I set up our Team page and I appreciate any support we get! My goal is not just to raise money, but to raise awareness. Since JD was diagnosed almost two years ago, I have met some of the most amazing children and families with autism. This "invisible" disorder is something that can make you feel very alone in the world, but I feel that education is the best way I can advocate for my son.
Tuesday, June 14, 2011
Sunday, June 12, 2011
Sunday, May 15, 2011
Basically high-functioning means two things: he's too advanced for a school specifically made for kids with autism, and he's too far behind to go to a school made for "neurotypical" kids. It's so frustrating - we're just stick in the middle - I feel like there's no good place for him.
I've spent hours researching schools, trying to find all the options. There's the public school option (which in our case didn't work), there's the private ABA centers, which focus on behavior therapy, there are schools for sensory integration, and private schools that may be for regular kids but will take a kid on the spectrum if they feel he can keep up.
I'm in the interview process right now. I'd really like to mainstream him, so we're meeting the director of a large preschool here in Orlando to talk about starting him in August with a full-time shadow until he gets adjusted. The cost? Normal preschool rates, PLUS $70 a DAY for a shadow. Good Lord. We're talking like $2000 a month for PRESCHOOL.
I guess it will be worth it in the long run if it benefits him, but that's if we can make it without going broke first! My head is still spinning with options but right now I just try not to worry about it because it makes my stomach sick! :(
Tuesday, April 26, 2011
Saturday, April 23, 2011
Monday, April 18, 2011
Wednesday, April 13, 2011
- Communication delay - he could only say five words by the time he was two. He didn't gesture either. He wouldn't point to something he wanted or bring you something or even hold his arms up when he wanted to be picked up.
- He lacked something called joint attention, meaning that if you pointed at something and said JD look! He would look at my finger, not the object I was pointing to. He couldn't connect that I wanted him to look at something in the distance.
- He couldn't understand simple directions, so if I said JD bring me the book he had no idea what I was talking about.
- He didn't really play, he stimmed. At the time I didn't know what stimming was, but I knew when he played with his toys (normally trains) they always had to be at eye level and he would bring his face real close and stare at the wheels while he moved them back and forth. It wasn't imaginary play.
- He had HUGE tantrums (and still does) when things don't go as planned or he can't communicate something he wants or needs. I'm not talking the normal whining/crying tantrum, I'm talking full body throw yourself on the floor screaming hitting biting hysterics that would go on for 20 minutes or until we figured out what was wrong.
- He never really interacted with anyone in the family and was much happier playing with his trains. He never liked to cuddle and if you held him he always had to be held facing out. Loud noises really bothered him and he would be totally overwhelmed if we did anything in crowds.
- He didn't walk until he was 20 months old and even then he preferred to crawl.
My advice for parents is if you ever have that feeling that something just "isn't right" - bring it up to your doctor and don't let them brush you off. What I've learned is that they may be experts in pediatric medicine, but I'm an expert on my son.
Thursday, April 7, 2011
Thursday, March 31, 2011
Saturday, March 26, 2011
I was a little nervous going in. JD can get overwhelmed pretty easily and this place is packed with bounce houses and kids running all over the place. But HE DID GREAT! It's amazing to see how far he's come in a year! It's great to see him jump right in and play with his friends, and do all the normal birthday things that other kids his age do.
Last year when we celebrated his 2nd birthday it was right before he was diagnosed. I look back now at the pictures and I can see how hard that day was for him. He looks stressed and overwhelmed and spent most of the time playing by himself with his cars while the other kids ran around having fun. Today it was totally opposite - he had a great time and was interacting with his friends the entire time.
I'm SO proud of him and SO happy for him! It was the best Spongebob birthday a little boy could have...I guess Spongebob is growing on me :)
Sunday, March 20, 2011
Thursday, March 17, 2011
Monday, March 14, 2011
If there's one thing I have a hard time doing it's letting go and just enjoying the moment. I'm a self-professed control freak, with an eye for perfection and no patience... also known as a Virgo. But having a child with special needs has taught me that life is more than just regretting the past or worrying about future, it's about appreciating the now. Taking each day for what it's worth, loving your family and friends and letting them know how much you care.
For me that's easier said than done... I have to remind myself each day that things happen for a reason and to have patience, patience, patience. It's impossible to know what the future holds so stop trying to control it. :)
Wednesday, March 9, 2011
Wednesday, March 2, 2011
Sunday, February 20, 2011
Here are some pictures of our happy day. I wanted to share it with all - it's an inspiration! I am so proud of my little boy, for moments like these come so easy to others but for him it all had to be learned. Communication, pretend play, no "W" sitting, no tantrums... all huge accomplishments!