Halloween

This year we are extra excited for Halloween. Halloween has always been my favorite holidays but Dominic has always been a little iffy about it. Dressing up has always been fun for him but going to get the costume was always scary with all the noise and things that jump out at you. This is the first year he was excited about going to Spirit, he loved all of the decorations, even the loud scary ones that moved or jumped out at him. This in itself is HUGE progress.

After spending a good 45 minutes looking at all the decorations it was time to pick out costumes. His little brother chose Catboy and I was almost certain Dominic would have also chosen someone from PJ Masks but he had his heart set on being something scary. This was pretty surprising but I went with and took him to the "scary costume" section for kids. They had some pretty awesome stuff and I was surprised he did not choose something zombie related. He finally found something he wanted, I believe it was called a soul taker. Its a hooded costume that covers your face completely. The fact that he chose something that goes over his face was mind blowing to me so I decided to have him try it on because I was pretty sure once he got it over his face he would change his mind. As soon as he put it on and saw himself he LOVED it. I asked him a few times if he was sure he wanted it and he said he was so we bought it.

Once we got home from Spirit it was time to decorate, this is another thing Dominic is not usually too interested in but as soon as we got the stuff out he was right on the front porch with me ready to help. So to recap the kid who was terrified of loud moving decorations, having things on his face, scary costumes, and trick or treating is now doing all of those things. There are no small victories in our house and I'd say these are some pretty great one.

Facing his fears.

As I am sitting here staring at my computer screen trying to think of something to write about it happens. It's a hot day here today so we are hanging out in the backyard trying to catch some relief from the breeze. This is a rare occurrence because Dominic has a major fear of pretty much any kind of bug and we have some pretty active web constructors around here. I convinced him to go play some basketball and then let them run around like crazy men in our sprinkler for a bit. I was certain when the timer (that's right we live and die by the timer here) for the sprinkler went off he would want to go inside but I was wrong.

After he was done playing in the water he decided to play some more basketball and then he raced cars with his brother. This is a pretty great thing because despite the bugs being outside seems to do wonders for his mood. We have not had any outbursts or meltdowns in the last two hours which is HUGE but that is not even the best part. I notice the boys are crouched down in the grass and the seem to be taking turns holding something. I walk over to take a look and it's a BUG! A potato bug to be exact which isn't the least bit scary to most but to Dominic anything with more than four legs can cause massive panic. They spent a good five minutes taking turns holding it and talking about how cute it was. To most this sounds like something pretty minor but I was super proud of him stepping outside of his comfort zone. Every fear or obstacle he overcomes is huge accomplishment in this house and right now I could not be more proud that he picked up befriended that little roly poly.

Don't be sorry for us.

Since Dominic's diagnosis I have always been really open about the fact that he is autistic. It's apart of who he is and there's nothing wrong with that. A huge part of my life has become advocating for him, making sure he's treated fairly, and trying to help people understand a little bit about autism.

Most people I meet are interested in learning a bit about him and autism, others don't have much to say which is absolutely fine, and then there are the people who tell me how sorry they are for me or for him. While I'm aware they mean no harm by this statement it is one that bothers me the most. Autism is no walk in the park, it is stressful, exhausting, and there are some days that I just don't know how we will make it through but these things are not all that autism. It is also fascinating and awe inspiring. It's showed me how strong people can be, how strong my son is.

Everyday he gets up ready to face the day no matter what challenges he faced the day before. He is eager to learn knew things, let me tell you if I had a nickel for every time that kid asked a question I'd be rubbing elbows with the likes of Bill Gates and Warren Buffett. Everyday I watch him try and understand the world around him, no matter how frustrating or scary it may be he never gives up. To see his face light up when something finally clicks is one of the most amazing things I have ever been fortunate enough to witness.

Everyday I wake up I feel lucky that I get to be Dominic's mother, that I get to go on this terrifying yet wonderful journey with him. There is an innocence about him that he will never lose and that's a beautiful thing especially with all the hurt and hatred we have in this world. He has taught me so much in the short time he has walked this earth and there is no doubt in my mind that he has made me a better person. I really hit the lottery when the universe blessed me with this child so don't feel sorry for me and don't feel sorry for him because he's got this you just wait and see.

When a Man at Walmart Asked How I Can Let My Son With Autism 'Act Like That'

One of the biggest lessons I learned from my son Dominic’s autism journey is that not everyone is going to be kind. People will stare or judge you for the movements your child makes and the public meltdowns.

One of my earliest memories of a public meltdown happened in a Walmart. Dominic was about 2 and half years old, and it was a busy day. He’s sensitive to noises, and large crowds can make him anxious. He became overwhelmed and started to scream and cry. I immediately picked him up and headed out the door so he could calm down. A few people stared at us as I was practically running for the door, but most seemed to try and avoid looking at us. I was probably about 50 feet from the door when a man turned and glared at me. He yelled, “How can you let your son act like that?” I stopped, looked him straight in the eye and said, “I’m sorry my son’s autism offends you!” He quickly turned and walked away. While it may have not been the most polite reaction, it felt good to stand up for my son.

As I was learning the ropes, we had quite a few experiences like that. People would scoff and stare when my son would begin to “fuss.” I was always quick to try and remove him from the situation, but a lot of times I wasn’t quick enough to escape judgment. There were some days when we would get a smile or a nod. Whether or not they understood what we were going through, I’ll never know, but it was a kind gesture all the same.

When Dominic was about 3, we took a trip to Denny’s. It was busier than I had hoped, and by the time we got our food, he was done with our outing. I asked the waitress for some boxes and my check. When she returned, she informed me my food was paid for. I don’t know who paid for our food, but it’s a day I’ll never forget.

Dominic is now 9, and he still doesn’t like going to the store and most other places. But I’ve learned how to get in and out of places a lot quicker, and he has learned how to cope for longer than 10 minutes. I’ve also learned how to read him a lot better, and I can typically see if an outing is going to end in a meltdown. If that’s the case, I let him stay at home. If staying at home isn’t an option, the promise of a special treat or a set of headphones and a good ole’ Metallica song can usually do the trick.

We have grown a lot since that day in Walmart, and while at the time it was both enraging and hurtful to be treated that way, I’m thankful it happened. It prepared me for what was to come.

Diagnosis unknown

Having an older child on the spectrum I am pretty familiar with issues that involve eating or lack there of. When Dominic was a lot younger he had a lot of issues with textures of food. We realized he would pretty much only eat something if it was crunchy. Over the years he's gotten a little better about what he'll eat but back then it was pretty stressful. Fast forward to about 2 years ago. Ukiah was about 6 months old and we decided to go ahead and give solids a try. We decided to start out with some avocado. We weren't too successful with our first attempt but he was only 6 months old and nursing was still going strong so we weren't worried about it.

As time went on we continued to try a variety of fruits and veggies. Eventually he started trying things but would gag with every bite. I knew gagging was a common thing with babies learning how to eat so I wasn't too worried about it at first, that is until it didn't stop. Time after time we tried to feed him and gagging turned into vomitting. We became concerned and reached out to his doctor who wasn't too helpful. We decided it would be best for us to find a pediatrician. At this point Ukiah was around 1 year old and still not eating. He also started having severe tummy pain and was only pooping about once a week.

His new doctor turned out to be really great. She referred us to the children's hospital so that he could be seen by their Gastroenterologist. Not long after meeting with her we were scheduled for a biopsy of his esophagus. Then came the blood test, and then the barium enema, and more blood tests. All the while he's still not eating and on a good amount of daily laxatives that aren't helping. I didn't know a child could scream the way he does when he is in pain. We've tested for Hirschsprung's disease, celiacs disease, they've checked his thyroid and even talks of a tethered cord. He also has therapy inside and outside of our home. He will be evaluated by a whole team of doctors at the children hospitals feeding clinic this July in the hopes that they can figure something out. He's lost a little weight but not too much at this point  thankfully.

After over a years worth of procedures, tests, and doctor visits he has become terrified of anyone or any place that looks like a doctor. Over a year of not knowing what is wrong with my son, why he won't eat, and watching him fall to the ground and scream in pain is about more than I can take. We have a long road ahead of us but I will not stop fighting until they can tell me what is wrong and how they are going to help him.

 

Future Unknown

Raising a kiddo on the spectrum is a wonderfully painful thing.It is a learning process that never stops. As they grow older new challenges emerge and you have to learn how to handle them as you go.

Dominic is 9 years old, he's got another 9 years until he reaches adulthood. That may seem like a long time but when you're raising a child with a future unknown it  feels like it is all happening in a blink of an eye. He has come so far from the non verbal constant melt down little boy that I knew. His vocabulary is not quite that of a 9 year old but he is learning how to communicate more and more everyday. Meltdowns are no longer an everyday thing, when they do happen we are more equipped to handle them.While he has already come farther than I ever dreamed we still have some real challenges that play a part in his adult life.

Processing is one of those challenges. If I were to say to you, please take off your shoes, put them away, and then go wash your hands before dinner chances are you will getup and do everything that I asked you to do. Dominic process information at a much slower speed. If you give him multiple directions at once he will become confused because it takes him so much longer to process what you are saying. If you repeat the request but say it in a different way he will have to completely start over trying to process what you said and become even more frustrated. Now imagine being in a school setting and trying to keep up with the class, unfortunately this is just not possible. At some point in the near future Dominic will have to be moved to a self contained classroom. He is considered low functioning academically. What this means for his future I do not know. I do not know if he will graduate with a regular high school diploma or maybe some kind of certificate.

He often talks about the future, he asks about high school and finding a job. He wants to be an astronaut and go to the moon someday. He has wonderful dreams of his life when he grows up. He wants to learn how to drive and get married although he's said he's afraid he will not find someone who will love him back. He even wants to have children of his own someday. It is bittersweet to listen to him talk about these things. I leave hearing about how he imagines his life will be but then the thoughts of realty creep into my head and I feel so very guilty thinking that those things may never happen. I will always stand behind him 100% and give it my all to make his future what he wants it to be as much as I can. The possibility that he may live with me for the rest of my life is a very real one and I am okay with that but I am still holding on to the hope that his future will be even a fraction of what he dreams it will be.

It's not always cupcakes and rainbows

Lately it seems we have tripped and fallen into a pit of emotional hell. Don't get me wrong things are not bad all day everyday but boy does there seem to be a lot more bad days than there used to be. I don't really know what's changed or if it's just coming with age but I wish I knew how to make it better.

Mood swings seem to be at an all time high. One moment he's happy as can be the next the smallest thing happens that sets him off into a screaming fit. Some days he is just off completely. It's like he wakes up ready to argue and that sets the tone for the day. It's exhausting, fewer things make you feel like a terrible person than being at odds with your 9 year old almost daily. There are times I give him more chances than I'd like to admit simply because I can't bring myself to fight with him again. 

Physical aggression is a place we haven't been to in a long time, probably not since he's become verbal but we're coming back there again and it's a place I definitely don't want to be. Most of the time it is directed at inanimate objects but it's safe to say I've been pushed and kicked more times in the last few months than I have in the past five years and I don't know what's brought it on. Once we've hit that peak of anger there is no rationalizing only redirection until he's calm enough to reach a moment of clarity. Once that moment hits we fall into self loathing. He tells me how no one likes him, how stupid he is and that he can't control his brain. 

He doesn't know why he gets so angry or does the things he does which makes me feel like I'm walking on a tight rope with no net. You can't let your children get away with everything but you can't discipline them when they have no control. Trying to decide which category we are in at the moment isn't easy and I'm always afraid I've gauged the situation wrong.

Right now I feel like we have hit a point in our life where we are just surviving. We wake up and hope to get through the day without it being too terrible. Things could always be worse but right now they could also be a lot better. The heartache of constantly fighting with my child and then watching him constantly battle himself is almost too much some days and I'm honestly not sure how I make it out of bed. The only thing I know right now for certain is I will never give up on him, I will never stop trying to make the days better or to make him happier. We will get through this just like we have gotten through everything else and we will be stronger for it.