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.

To the parents struggling to get a diagnosis.

Being a parent in itself is an amazing and terrifying thing. We want what's best for our children, for them to happy and most of all healthy. So what happens when when you just know something is wrong. You can feel it down in your bones but no one will listen? 

Somewhere around 18 months I could tell something was not right with my son. He wasn't responding to his name, he wouldn't make eye contact, and he would hardly eat anything. As time went on he wasn't talking, he was inconsolable, he became obsessive about certain toys and would line them up all over my house. I finally decided to make an appointment with his doctor to talk to him about my concerns. I was pretty much brushed off as a paranoid first time mother. Right there on paper he had failed written for EVERY milestone yet he insisted Dominic would catch up.

I decided to get a second opinion and took him to a new pediatrician. He told me my son was too young for any testing and told me I would have to wait. This was not an acceptable answer for me so I kept looking for new doctors. Finally my mom found a doctor about 50 miles away that was willing to listen to me so we took him to see her. After listening to everything I had to say and interacting with Dominic she too knew something was not right. She had his medical records sent over from the previous doctor and she cried when she saw he was failing everything and no one was doing anything about it. She finally gave me the referral I needed to have him tested for autism. It was a long process with a lot of paperwork and evaluations  but in the end we finally got our diagnosis a few months later. 

From the moment he was diagnosed I rushed to get him in early intervention. He had in home therapy and then started preschool for special needs children around the age of 3. Had I taken the first doctors word for it who knows how different his life would be. He would have missed out on precious time in early intervention and may not have come as far as he has today.

For any parent who has that feeling, the one you feel down to your core that is telling something isn't right listen to it. Don't let anyone make you feel over protective or paranoid. You know your child better than anyone in the world.  Trust your instincts for they are rarely ever wrong.

To his sweet little brother

Dear Ukiah,

You are barely two years old and you have already made such an impact on his life. 

You are filled with so much love and compassion. Everyday I watch you two together and I am so thankful for you. You are his best friend and his keeper.

You have taught him so much in the little time you have been in this world. He shares toys he normally wouldn't let anyone else touch, he takes the time to try and read your books to you, and even tolerates your slobbery kisses when normally the germs would send him running for the hills. 

He's always on your mind, whether it's a visit to the doctor, hospital, or grocery store. Any sticker or toy you get you always make sure to ask for one for your brother, even if he's not there. The happy dances you dance and the songs you sing when it's time to get him from school warm my heart.

Everyday you are learning from each other. You have taught him so much patience and understanding. He has taught you new words and how to play his games. His face lights up with pride each time he teaches you something new. I feel so lucky to have the two of you as my children. I look forward to watching your bond get even stronger as you guys get older. I spend a lot of time worrying for your brothers future but knowing he'll have you by his side gives me so much hope.

 

Autism and our education system.

If you've ever been to an IEP meeting there's a good chance you've seen how flawed our education system can be when it comes to our kids with autism. It could be a teacher who doesn't want to accommodate your child's extra needs. Or maybe your child doesn't quite meet the criteria needed to get the extra help even though they never quite hit the mark for their grade level.

My son will be 9 this month so we have had our fair share of IEP meetings over the years. We've had great teachers and we've had one who didn't seem to want to put any extra effort into him. Unfortunately her lack of effort showed greatly on his end of the year IEP, it was the first time he had ever failed all of his goals.

With the increasing number of children being diagnosed with autism I feel like our education system needs to be reevaluated. In a perfect world all teachers would have experience with autistic kids. They would go out of their way to give a little extra time and help to those who needed it. Whether they spend part of their time or all of their time in a general ed classroom. For children like my own, there would be space available in the type of classroom that would fit his needs. We are currently in the process of applying to get into an ERC classroom. Currently there are only about15 spots available in the entire school district. If he doesn't get accepted he will continue to spend part of his time in LRC and part time in a general ed classroom which is becoming harder and harder for him as he gets older. With such limited space it could take years for him to be accepted. In the mean time he will just fall farther and farther behind.

I know that none of these things can be changed overnight but I feel like as a community we desperately need to push for changes. We have to fight for our kids and make sure they are getting the best education they can. One they deserve.  For the parent who doesn't feel like their child is getting what they need, don't be afraid to speak up. Don't ever stop fighting for what you know they need. Don't ever let them make you think they know what's best for you child. We are their voice and their biggest advocates and we must never forget that.

To the woman staring at my son in the store

On the list of things he doesn't like to do I'd say going to the store is close to the top for Dominic. It's bright, loud, and typically a lot of people. If he's there too long he gets a headache. Short trips are sometimes tolerable but he still makes sure to let me know he's not pleased about going ahead of time. 

It's usually not long after we get inside the store that he starts stimming. He flaps his hands, hops around, or says the same things over and over. If we are not there too long this usually keeps him calm enough to make it through the trip without a meltdown. There are times that if it's extra busy or loud that he quickly becomes agitated and we have to leave but most of the time his stimming allows us to get everything we came for.

Last night I asked him to come with me. I told him he could pick out a movie and a treat if he came. He complained of course but he came along anyway. Not long after we got there he was hopping around repeating the same thing over and over. His brother was giggling and trying to go around with him. While waiting for a text back from my husband we stood off to the side of an aisle. Dominic was standing next to me making repetitive hand movements while talking to himself when I happened to notice a woman staring at him with looked to be disgust. As much as I wanted to I decided to say nothing. Dominic had no idea he was being judged and I certainly didn't want him to so I just sat there and stared at her until she realized I was looking at her. She shook her head and went on her way. 

It always hurts when our children are being judged. It hurts even more when you come to the realization that this will be a life long thing. Even before I had children of my own I did my best not to judge the mother of the screaming child in the grocery store. Or the sweet boy making odd movements while repeating himself over and over. I didn't know what these people were going through so who was I to make a judgment. I can only hope that one day everyone has that mentality. Until that day I will be staring back at each and every person who feels the need to judge my son and I can only hope he will never notice.

To the parent who just got a diagnosis.

I want to start this off by saying it's going to be okay and that you are not alone. For some the diagnosis comes as a total surprise maybe even like a punch to the gut. Maybe you thought they were just a little quirky or taking a little while to catch up. For others like me, it came as no surprise but that didn't make hearing it any less hurtful and disorienting. Dominic failed every single milestone and had just about every symptom of autism but that still did not lessen the blow. The day I got that phone call changed my life forever. 

We all kind have this idea of how life will go when it comes to raising kids. For the most part they are on a similar path, they will go to school, play sports or maybe become a theater kid. There will be dances and sleepovers and then graduation comes and they enter the adult world. Sure you'll always worry for them because they are your children and you love them but they are now fully capable of taking care of themselves. So what do you do when you get the news that lays an entirely new path in front of you?

Breathe. Breathe and do not forget this does not change who your child is. You have just received the diagnosis but they were autistic all along. It's okay to be hurt, scared, or angry. There's really no right way to feel because we all handle things differently. Once you have taken the time to process the news you must now realize you are your child's biggest advocate. You are their voice and their protector don't ever let anyone set limits for your child. They can achieve so much when we are standing with them. Check out local resources and maybe even find a parents group in your area or even online. Every child is different but having someone who is going through something similar to you is an amazing thing.

Another important thing is to have support through loved one, whether that's family or a close friend it can really make all the difference. Let them in this world you've entered with your child. Let them learn with and help you, vent to them, cry to them, and share every happy little milestone your child meets. For me this was my mom. She was a huge support person in my life while we went through the process of getting Dominic diagnosed and an even bigger support person after the diagnosis.

The path that you thought you were on has taken a turn to one less traveled. It will be scary and amazing all at the same time. It will show you that you are stronger than you ever thought you could be and you are capable of loving more than you ever thought possible. As you walk down this path two of the most important things to remember are you are not alone and it is going to be okay.

Decisions I don't want to have to make.

January 11th 2016 is a day I had been dreading for months. This was the day of Dominic's  3rd grade IEP meeting. In the past I have never really been fond of these meetings but I knew this one would be especially hard because it was going to be time to talk about his future and about those decisions I don't want to make.

Over the last few months Dominic has gone through multiple evaluations and testing to get a feel for where he is at. While he is making progress he is still no where near the level of his peers in general ed class. It has always been this way but thus far we have kept him in general ed for about 80% of time because socially this has benefited him greatly. He is definitely a child who is eager to learn and actually really loves school but his processing is significantly slower than others which is causing him to fall farther and farther behind. We are extremely lucky to have such a wonderful teacher this year who takes the time to give him extra help and accommodate his extra needs. We are also lucky tags the rest of his team is equally great and truly cares for him unfortunately we are getting to a point where this will no longer be enough.

Low, low, very low, very low, and some more very lows are what is written on the results page that is given to me. While this really isn't a surprise for some reason seeing it on paper is still like being pinched in the gut. He did score average in math which made me so proud, the kid is pretty good with numbers but the rest broke my heart for him. I have no don't in my mind that he is a brilliant kid who is going to continue to progress and go farther than anyone ever thought after all they said he would never even talk but now I am faces with a big decision in terms of his future. Do I keep him where he is and let finish in the school he has been in since kindergarten? Where his friends and teachers are? By doing this I will most likely be hurting his future academically. My other choice is to apply to have him places in an ERC classroom.it looks like a typical classroom however there are less students and more teachers. They also are more likely to incorporate his IEP into the class so that he does not have to leave for extra help. This part of it would be fantastic as would the extra one on one time, the bad part is taking from his school he's been in for four years.

After talking with his team and a long conversation with his teacher I have decided to apply for the program. It is a long process and there is no guarantee that he will get in and even then I can always change my mind if I feel it's not really what's best for him. This is a decision I have been dreading for a couple years now and I don't think I will ever feel 100% confident that I am making the right one no matter which way I chose to go. In the end I just hope he is happy and able to continue to go farther than anyone ever thought he could go.