Reasons Why Having a Child with Autism ROCKS!

My son with autism, Danny, is doing great. He’s motivated at school, behaving very nicely at home and seems very happy. And, oh yeah, he’s talking! That’s right, the child who I was just writing about having never said, “mama” is now saying it along with many other things. I am done waiting for that milestone and I am so happy. I want to spread my joy. Sometimes, and believe me, I know this, it is hard to find anything positive about having a child with autism. We watch our child struggle to communicate, make connections, and navigate the world around them. But, when I got to really thinking about it, I found some wonderful things embedded in this journey. Being a mother is a life changing experience in itself but having a child with autism has made me a better person. It has pushed me to the best mother I could be and has taught me to appreciate all the wonderful things that come from being “normal.” So, below is a list of things that I would have missed out on if I didn’t have my sweet Danny.

1. The People.
I have met some of the best people because of Danny’s autism. The therapists, teachers, and other autism parents are compassionate, energetic and all around awesome people. They have laughed with me, cried with me and celebrated every tiny milestone. Also, my mommy friends with typical kids are awesome, too. They are the ones who have accepted Danny whole-heartedly and sometimes he was the first person with autism they have ever known. They didn’t freak out when Danny bit them (they were love bites, I’m sure!); they forgave me when it took me a month to call them back; they made sure they had gluten and casein free snacks at play dates and they just laughed and helped me clean when my child had a very messy potty accident at their house.
My life would be so empty without all of them.

2. The People affected by autism.
Naturally, having a child with autism, you meet a lot of other children and some adults with autism. Before Danny, I was a little frightened of people with autism and only felt pity for them. Now, I love being around people with autism. They are some of the most innocent and beautiful souls I have ever encountered. Experiencing the world with them has completely opened my eyes to some of the simple joys of life.

3. It Gives you Confidence
Parenting a child with autism is no joke. It can be terrible, heartbreaking work. I have dealt with things that made the problems I had before Danny seem ridiculous. But you know what? I did it. I fought for my child. I’ve figured out how to feed him, educate him and raise him in the best possible way. It wasn’t easy, but I did it. Now, I feel like I could do anything. I could probably slap on some lipstick and run a small country without breaking a sweat.

4. You Develop Superpowers.
Danny can be a handful. He bolts, he likes to make messes and he puts a lot of stuff that is not meant to be eaten in his mouth. After five years of being his mommy, I stop him from running off before he even realizes that he was going to run off. I can extract inedible things from his mouth with one finger without being bitten. And, I can hear the tell-tale sound of the refrigerator door being opened from the opposite end of the house. Since Danny was non-verbal until recently, I learned to read his mind. I could anticipate his every need before he even realized he wanted it. I’ve developed cat-like reflexes, catching Danny before he flips his chair over, grabbing his little hand before he runs off. All I need now is a Super Mommy costume and the ability to fly. X-Ray vision might be fun, too.

5. Faith.
Some of my readers may disagree with me, but having a child with autism has deepened my faith incredibly. I was meant to be Danny’s mother and he was meant to be my son. I know that God put me on this journey for a reason and sometimes the one thing that kept me going was knowing that He believed I could do it. I feel like God had the faith in me to give me this rare jewel of a child and I have faith that with God’s help, I can raise my son to be the man that he is meant to become.

6. An Excuse
Let’s face facts, all moms at some point or time make mistakes. We might send one of our children off to school with no underwear on and unbrushed teeth. We might snap at one of our children in a grocery store. One of our little angels might repeat a very inappropriate word in Sunday school that they heard Mommy say when she dropped a can of soup on her foot. Our houses (especially mine!) might look and smell a little like a fraternity house. We lose our patience, forget things and basically act human. Sadly, I have heard other mommies being ripped apart by other people for these mistakes. But, when you have a child with autism, most people have the good sense to keep their mouth shut, at least to your face. While I’m pretty certain that I would still make mistakes if I had only typically developing children, I think I experience a lot of more tolerance and less judgment due to the fact that one of my children has autism. While I think this is very unfair (being a mom, no matter what, is hard work!), I will accept it as a perk.

7. Perspective
I now know what a gift it is just to be able to speak. When I think of how Danny must have felt when he couldn’t get anyone to understand him, it breaks my heart. I now appreciate the ability to simply open my mouth and have words come out, simply and easily. Also, having two other typical children, I see what a blessing it is have an average child. While I wouldn’t consider either of my other boys to be just average, I don’t care if they are a football star, neurosurgeon, Olympian or Oscar winning actor. While I think it’s possible for them to do any of those things, I just want them grow up, live independently and be happy.

For now, this is all I have but I am sure there are more reasons I will discover as I travel down this road. While I never would have chosen this path in life, autism has changed me for the better and I am grateful for this. My life is full of good people, humor, joy and I am thankful for all of it.
-Alicia Ballard Westbrook

Giving Thanks for Hope

Join us for Giving Thanks for Hope 
on Saturday, November 19th, 2011, the wonderful folks at
SouthRock Bar and Grille at 830 Greenville Highway, Hendersonville are hosting an all-day event for St. Gerard House!

Family Friendly Lunch Hour
11:30am - 1:30pm Enjoy time with your kids of all ages and abilities with gluten-free menu options, live acoustic music by Johnnie Blackwell, toys and games, and an autism-friendly atmosphere!

Bike Raffle

Enter to win an awesome Mountain Dew Mountain Bike!

Thanks to Sycamore Cycles, the bike is tuned up and ready to ride!

Raffle tickets $10 each, or 5 for $45

Tickets are available now through November 19th at St. Gerard House and at SouthRock Bar and Grille.

Need not be present to win! More photos of the bike on our website - click here.

50-50 Raffle
The more entries, the bigger the pot!
Winner takes half, St. Gerard House gets the rest!

Cornhole Tournament
Gather your friends, pay per player, and decide who's the best around!

Music
8:30pm until ? Enjoy great food, the company of friends, and great music from Johnnie Blackwell and his band, the Six Toed Possum Babies, all evening!

Please come out and join us for a fun-filled day - there's something for everyone! Proceeds from the day's raffles, games, and food sales benefit St. Gerard House. We hope you will invite your friends, and join us!

Building Dedication

On Monday, October 10th, many of our friends joined us for a
dedication ceremony. Bishop Jugis blessed the crowd,
and then the grounds and all the rooms inside.

Here are a few photos from the event:

students and teachers take a break from the regular school day 

to take part in the ceremony

friends and family join the celebration

Fr. Nick, Fr. West, and Bishop Jugis 

prepare for the ceremony

thank goodness the rain held off

Caroline does a reading during the ceremony

Bishop Jugis blesses the crowd

Fr. Nick assists as Bishop Jugis blesses rooms in the Grotto

while Fr. Nick and Bishop Jugis were inside blessing the building, 

the children lifted their voices in beautiful song

the crowd listens as the children sing

Caroline and Ms. Breerwood 

handsome board members and supporters 

of SGH wear puzzle-piece ties

we also  made it to the paper! click here for the 

hendersonville times news photo gallery of the event

Click here to see even more photos on our Facebook page.

Thank you to everyone who continues to support us in all ways!

And So We Wait...

For all the other moms who are waiting with me, especially Stacy, Moranda, Marie, Caroline, Jennifer and Kelly…

When Danny first started school at the Grotto, one of his programs was waiting. To teach this skill, the teacher would show Danny a toy, a ribbon he liked to play with or sometimes even food and tell him to “Wait.” Danny would have to sit, without tantruming or grabbing the toy for a predetermined amount of time before the teacher would give it to him. Danny has since mastered this task and now I feel like I am the one who needs to be taught how to wait.

Parents of children with autism usually have to wait for many things that most other parents receive quickly. We wait for eye contact. We wait for milestones. We wait for first words. We wait for doctors to offer us answers about our children’s diagnoses. We wait for the education system to be able to effectively teach our child. We sometimes have to wait for family members to come to terms with our child’s behavior. We wait for terrifying tantrums to end. We wait for progress after starting new therapy programs/diets/medications/supplements. We wait for the time when we can take our child out in public without being stared at or receiving unsolicited advice.  We wait to have a true conversation with our child. We wait for hugs and kisses. We wait for “I love you.”

I have been living with autism for about four years now and I am still waiting for many of those things. Some nights, I dream about Danny laughing, talking and playing like a typical five-year-old. Then I wake up and still find myself waiting. I get hugs and kisses from him now and when I come to pick him up a smile spreads across his face and he comes to me. I felt like I waited forever for that one. But, I am still waiting for my sweet little son to look at me and call me “Mommy” and I feel myself growing impatient. I get angry and plead with God. I’m not asking for much, no miraculous recovery or even a full conversation. I just want Danny to look at me and say “Mommy.” I hear other children, including my own typical boys, saying it, “Mommy, mommy, mommy” and I don’t understand why Danny can’t, why he won’t just say it.

My husband also waits. Danny has never called him “Daddy.” Sometimes, too, I think he waits for me. For his wife to quit cycling through the anger, joy, sadness, hope and despair that comes with having a child with autism. He waits for me to finally let go and trust someone else with Danny so we can have a weekend away. Even my other sons wait. They wait for Danny to play with them. They wait for Danny to call their names.  They wait for me while I’m taking Danny to therapy and while I’m attending meetings about Danny. My family waits for Danny, my family waits for me.

Living with autism is like a master class in waiting. We learn to wait for our child, for our sibling. We bide our time and believe that one day all those things we are waiting for will happen. While we are waiting, we learn how to, bit by bit, pull our child out of the fog of autism. We advocate for better education and demand answers from the medical community. We patiently explain autism to neighbors, to other mothers at the park and to complete strangers at the grocery store. Sometimes while we are waiting, we discover the unexpected joys and fullness that come from knowing a person with autism. While I’ve been waiting, I’ve met the most extraordinary people I know I would have never known if Danny didn’t have autism. Even though I am still waiting, I have some great people to do it with.

I will probably be waiting the rest of my life. The road ahead of Danny is long and hard. But, the one thing that I want my son to know is that I will wait for him. Whatever road Danny’s autism takes him down, I will be waiting to see where it goes with hope in my heart. 

Meanwhile, in Knoxville...

Click here to see Wild Wing Cafe in Knoxville, and the fundraiser they're doing for St. Gerard House tomorrow at the Tennessee / Florida Game!

End of Summer Blues Festival - This Weekend!

Join us this Saturday! Bring your friends! Come on out for as long as you'd like!

This Month's Parent Support Group: Grief

           At this month’s parent support group at the St. Gerard House, the topic will be grief and acceptance. I have invited a guest speaker, psychiatric nurse Anne Robinette, to join the group and share her knowledge about working through the grieving process and coping with the array of emotions which parents of children on the spectrum experience after a diagnosis. The main reason I decided on having grief as a discussion topic for the group is because I personally have struggled many times with my son’s autism diagnosis. There will be long periods of time where I feel fine---I have three healthy beautiful children and I am grateful. Danny’s autism feels like a minor flaw in the fabric of my family’s happy life. Then something will happen. Someone will make a thoughtless comment. Or, Danny will have a particularly bad day full of tantrums and odd behavior. His birthdays are particularly hard for me as they are a reminder of how the time Danny and I so desperately need to get him developmentally closer to his typical peers is slipping away. These things seem to take my breath away. I feel like I’m starting the grieving process all over and that I’ll never fully accept Danny’s diagnosis.

            After a little bit of googling, one model of the stages of grief that came up the most was the Kubler-Ross model of grief.  This model had five stages: Denial, Anger, Bargaining, Depression and Acceptance. I know that I have personally experienced all of these stages at one time or another in the three years since Danny’s diagnosis. At first, when his pediatrician mentioned the dread “A” word to me, I thought it was impossible. Danny occasionally made eye contact, he didn’t spend hours a day lining up his toys and so what if he wasn’t talking yet? He’d talk eventually. I refused to see what was in front of me for several months and I still kick myself for it. I still feel denial. I look at my son and think that it is impossible that he has autism. Maybe it was something else, some strange temporary glitch and he’ll wake up the next morning talking and laughing. Deep in my heart, though, I know that it is highly unlikely that this is the case.

I tend to linger in the anger stage. I get mad at myself for past decisions I’ve made concerning his treatment. I get mad at my family for not being as understanding as I think they should be. I get angry at people who stare in the grocery store. I get angry at people whose families have never been touched by autism. I get angry at God for giving me what sometimes feels like an impossible task. I get mad at Danny for being difficult or ill-tempered even though I know he can’t help it. I just get mad and stay mad. I don’t feel like I’ve done much bargaining because, honestly, I don’t have much to bargain with. I do remember, though, during those first long nights after his diagnosis lying in my bed wordlessly repeating a prayer of “Please, God, please, God, please God” until I finally fell asleep.

Depression is another old acquaintance who calls me up and tells me that I can’t do this, I can’t possibly raise this child, that my marriage can’t survive autism, that my other typical children will always be overshadowed by their brother’s autism, that everyone thinks I’m a terrible mother. While my anger energizes me and pushes me to find other ways to help my child and spread autism acceptance, the depression completely saps me. I want to stay in bed and pretend that autism is something that happens to other people’s children. Acceptance is also something I struggle with often. Of course I accept my son and I accept this journey that we have been placed on together. I also accept the huge impact that autism will have on my family. But sometimes, I get tired of accepting things. I don’t want to accept all the missed milestones. I don’t want to accept that my son might not live independently. I don’t want to accept that he might not go to college or get married. I want him to have the same opportunities and dreams that I did. I want him to experience the kind of love that a mother, father, or brother cannot show him. I struggle with acceptance because it can feel like giving up.

            Right now, I am in a good place. Danny is doing remarkably well and I feel like a lot of the hard work that has been put in with him is paying off. I have some wonderful friends who share this rocky road of living with autism. The St. Gerard House has also been an amazing place of support and renewal for my family.  Today, I can look at Danny and see what a blessing he is. I am grateful for the ways the autism has molded me and how much it has taught me. But, I know, from past experience, that I may not stay in this place much longer. Something might throw me back into the spiral of denial, anger, bargaining, and depression. I want to learn how to cope with all these and quickly find my way back to this good place. Hopefully, we can all share with each other how we get through our differing stages of grief and find joy in our crazy lives.

-Alicia Westbrook