He Yells?

"So is Jacob special needs?"

I was taken aback. I'd never been out and out asked by anyone like that about my son. And I had especially never been asked by a child.

My husband and I were at our church for their parent's night out program that we participate in. It's a coop program, and it was our night to "babysit" instead of having a date night, so there we were with a room full of sixteen kids over the age of seven, with most of them being loud, giggling, screeching, girls.

Having only a three year old little girl, I am obviously not used to being around a room full of girls that age. Immediately I put a craft table into the works to diffuse some of the shrieky high squealing. All was good. My husband was entertaining half of the classroom by acting goofy, all the while helping Jacob create his own Twister game by piecing together colored circles on notebook paper since the mat had been misplaced. I had a table full of girls quietly making their own creation with hearts and rainbows galore. We had the situation under control. And that's when one of the older girls sitting across from me asked me the question.

I didn't know how to answer, I was so caught off guard. I realized as I looked up from my own glittery heart creation that the entire table of girls was staring at me quietly waiting for my answer.

"Well.....why do you ask?" I finally stammered out.

The girl instantly responded by saying, "I don't know. I just figured he was."

The rest of the table continued to stare. I was hesitant to answer. Although the girl inquiring barely knew Jacob and was only around him during this time once a month, many of the other girls knew Jacob much better and were closer to his age.

I mumbled something quietly saying we would talk later, hoping to get her alone at some point. But then I thought about it. Hadn't I always said that I wanted to teach others about Autism? Hadn't I always said that I wanted to educate EVERYONE to create acceptance and understanding? I had to be honest, and it was a great place to start.

By this point all the other girls were back to their stickers and glitter. The older girl was rambling on about how she enjoys "special needs kids" so much. They're so nice, so funny, yada yada.

"He has Aspergers," I said. "Jacob has Aspergers." not caring that she was still talking about her love for "special needs kids".

She heard me and stopped mid sentence and said, "Huh? What's that?"

"Have you ever heard of Autism? It's like that. Jacob has Autism," I replied.

"Oh yeah! I know what Autism is. That's when they are not very smart. So Jacob isn't very smart?"

Wow...this is what a twelve year old thinks of Autism? I figured when I said Autism she would have heard of it. It's a fairly common word nowadays, and an even more common diagnosis anymore. But "not smart"? And could she be any louder? The last thing I want is Jacob hearing his name and walking into the middle of this conversation. He wouldn't take too kindly to someone saying he wasn't smart. I looked over at Jacob taping his colored circles to the floor oblivious to the chaos of kids running circles around him.

"Actually Jacob is very smart," I told her. "Probably smarter than you, smarter than me, smarter than anyone in this room tonight." I wasn't bragging my son up to this girl. Nor was I saying it in a "my son's smarter than you are, na na na na na" way.  I just needed for her to know the truth about Autism. That it has nothing to do with "smarts". I went on to tell her in simple terms about Autism. That Jacob gets easily overwhelmed. That things bother him. That he likes things a certain way. That he gets nervous. That he doesn't always know how to act or what to say.

"Ohhhhhh....so that's why he yells at us! That makes sense!" she replied after soaking in all the information I gave her. Again, could she be any louder?

"He yells?" I asked. But the girl had moved on. She was now stringing bracelets for all the younger girls around her and had a captive audience. She either didn't hear me, or chose not to answer.

He yells.

My son yells and that's what his peers see and think of him.

I guess in my mind I had envisioned those nights where we dropped him and the baby sister off at church and my husband and I went out for a much needed 3 hours of quiet, much differently. I always ask Jacob about his night, and he always has plenty to share. I also make a point to ask the parent in the room about the evening, and always hear there were no problems. Sure more often than not Jacob decides to play a game or read a book versus watching the movie with his peers, but never has there been a mention of yelling.

I've known for a while it is coming. The day when we need to tell Jacob of his diagnosis, beyond what he already thinks. Jacob knows that he has things that bother him. He knows he takes medicine for those bothers. Jacob knows that there is a para in the classroom that usually helps him, but he doesn't realize that they are ONLY there for Jacob. He thinks he just happens to need help the most. Jacob knows that his brain sometimes thinks differently, but he thinks that is only because he is super smart.

I don't want there to be any shame for Jacob regarding his Aspergers diagnosis. Nor do I want him to ever use it as a crutch. And I certainly don't want him to think he is less because of his diagnosis. So I hope when the time comes to officially tell him, he can find his own strength and his own acceptance.

But for now I have to prepare myself because if this girl sees it, then most likely all his peers are starting to see it. Next time I won't be caught off guard.

Because let's be honest. Yes, my son has special needs. And yes, he yells.

Although, I still don't think he could ever yell as loud as a room full of preteen girls.

What Autism Has Taught Me

 

I've learned a lot from my son. I know just about everything you would ever need to know about elephants, and could name more major league baseball players than most moms. And aside from that, I've learned a lot about Autism.

Throw any Autism acronym at me and I could tell you what it stands for. If Autism is old hat to you, you too know the lingo. If you're new to it, you will soon learn what ABA and SPD stand for, plus a laundry list more. I've read all the books. I've heard all the theories on what causes Autism, and shuffled through them throwing most to the side.

But most importantly, I've learned a lot about myself and life in general because of Autism. With today being World Autism Awareness Day, I thought I would share what Autism and my son have taught me.


1. Patience! I learned this one right away. Parenting in general helps teach patience, but parenting a child with Autism tests your patience at a whole new level. Not that I am perfect at it, because I do have my moments. Mornings are particularly hard when we are trying to get out the door and Jacob decides to watch one more baseball video rather than get his shoes on.

2. Not to judge others: I admit, before Jacob was born, I was pretty quick to judge other people. I'm sure I looked at the parents of kids who were acting up wondering why they couldn't control their children. You know how people without kids of their own always think they have all the parenting answers. Now when I see a child having a meltdown or a mother who looks like her patience is being tried, I don't give them a disapproving look. Instead I smile, because I have no idea what struggles they are battling.

3. To stand up for what is best for my son: Typically I am a pretty quiet person. I follow the rules and keep my mouth shut. But I have learned pretty quickly that if I am not speaking up for my son, no one is. I am his advocate. I am his voice. And I will make sure he has what he needs to succeed.

4. Times when I feel the most broken, are actually times when I am my strongest: I have my moments where I just lose it, when I feel like the worst mom ever. There are times when I feel I can barely keep going. But when I look back at those moments after the fact, I realize how defining they were, and how strong I actually was even if I didn't feel that way.

5. Recognize and appreciate the small things: When you are a parent of a child with Autism, you really view each day differently. I don't need anyone telling me "enjoy each moment" or "someday you will miss those days". As a parent of a child with Autism, I very much live IN THE MOMENT. I don't know what the future holds for my son. We live in a very narrow moment enjoying every small detail. Typical behavior that goes unrecognized by parents of neuro-typical kids, can bring a tear to my eye. My son put his socks on without asking for help. He attempted to go to Sunday School with his peers, even if it lasted all of a few minutes. Jacob dried off on his own after a shower. He had a friend over and actually PLAYED with them. He asked about me, about my day. He didn't play baseball in the store. He wiped his own bottom. He actually WANTED to play in the snow and even suggested going down on a sled. He's learned to use a scooter, zip his coat, unwrap a tootsie roll, turn his sweatshirt right side out. You get the idea. Things that to others are automatic and never acknowledged, do not go unseen here. There is joy everyday in our house in the small things, and we take things one day at a time.

6. Savor every moment: This kind of goes with appreciating the small things in life. Every "I love you", every snuggle, every small connection with your child means so much when they come so infrequently. Don't get me wrong, Jacob is a loving child. He'll ask to snuggle or cuddle in bed. He kisses us goodnight as we tuck him in bed. But finding a deep connection with him at times is difficult, at least more difficult than with our 2 year old who daily gives me affirmations of her love.

7. Pay attention to my own social skills and body language: I feel like I am pretty much an expert at social skills. When you are constantly reminding another human being about their actions, you become hyper aware of your own.

8. Sometimes people are cruel, but most times not: When I am meeting someone for the first time, I try to always slip into the conversation that my son has Autism. I do this for a few reasons. The first to spread awareness and just open up that dialog. The more it is out there and people understand, the less hurdles my son will have as he gets older. It is always interesting to me how people respond. Some truly don't know much, especially when I say "Aspergers". And for others it seems that somehow Autism is connected to their life as well. The second reason I tell people is so they understand my son. Looking at Jacob and even talking to Jacob, you wouldn't really suspect that he had Aspergers. More often than not, when I tell people and they have met Jacob, they respond by saying they would have never guessed. It's not that I am telling them as an excuse for any of Jacob's potentially odd or excited behavior, but for understanding. I have found when people know the whys behind Jacob's behavior, they are less likely to be judgmental and pass it off as bad parenting, and instead are accepting. Sure the occasional stranger has been known to be cruel and rude when Jacob is acting up, and be assured that I let them know why! And of course kids always can be hurtful to anyone that is different. But for the most part, people are receptive to Jacob when they have an understanding.

9. Labels don't have to be a bad thing: For many years I was scared of my son being labeled. That fear kept us from getting him diagnosed at an even earlier age. Getting that diagnosis and official "Aspergers" label was the best thing we ever did. It felt like the tables were turned from that moment on, as if we now held the power to control Jacob's future. He was being labeled anyway whether I knew it or not, but by having him diagnosed, it just gave him the right one.

10. Eye contact isn't that important: It really is overrated. I have learned that Jacob actually hears me better when he isn't looking right at me. But I still catch myself on occasion saying "Jacob, look at me" when I want his attention.

11. It's ok to not know why: This one took a while. For the longest time I was obsessed with knowing "why" Jacob had Autism/Aspergers. What caused it? I read all the theories, which most I dismissed. It always went back to guilt and feelings of somehow I caused this or didn't do the right thing to prevent it. I've learned it really doesn't matter what caused Jacob's Autism. Looking at the "why" means looking backwards, and looking backwards isn't going to help Jacob. So I try to focus more on the present and staying positive for the future, and no more self blame.

12. Embrace my child for who he is, not for what I thought or dreamed he would be: Every parent has dreams for their child. Many times those dreams come before they are even born. I know mine did. You have visions of what your child will be like and your life with them. No parent's dreams include Autism. And again, this is a hard one for me. My husband and I both struggle with this from time to time.

13. Unconditional love exists: Even in those worst moments when Jacob is lashing out, hitting, screaming, and melting down, I am aware of how much I love my son. Sure those times are frustrating and hurtful, but it's in those moments when I feel my heart crushing inside. When I know I would do anything to take away my child's struggles. It's in those hard moments when I know what true unconditional love is.

14. To find potential sources of sensory overload in every situation: The way I view the world is completely different now that I know what could set Jacob off. When he was little, we would cart him off to carnivals, parades, restaurants, even Walmart, without a clue as to why he would cry and scream. Too loud, too crowded, too bright, too exciting, it can all be too much! It's not that we don't do those things today, we are just more prepared, and make sure Jacob knows what is expected and what will be happening next. Surprises and Autism are not a good combination.

15. Life goes on: Autism is everyday. But so is laundry, and making dinner, and errands, and appointments, and school, and work, and you get the idea. More than anything, Autism is not the end of the world. There is still love. There is still laughter. And there is still life with Autism.

Lost Mommy

The other night I lost it.

Completely broke down, lost it.

I mean crying-so-hard-that-the-next-day-you-can't-even-put-your-contacts-in-your-eyes-and-you-feel-like-you-have-been-run-over-by-a-freight-train-numerous-times kind of lost it.

I usually hold it together pretty well. I don't fall into a pity party attitude regarding Jacob's diagnosis. I don't let the exhaustion get to me. I keep it together and remain strong. But sometimes, every once in a great while, it all gets to be too much and I break.

Let me back up a little bit. The last few weeks have been hard. It started with a call from the school nurse saying Jacob was in her office with a bad cough and wheezing. I had known he had a cough, but Jacob insisted he felt fine and I sent him to school assuming he was just getting a cold. The nurse was adamant that Jacob be seen by a doctor soon, so I picked him up from school and whisked him to the doctor.

After listening to Jacob's lungs, the doctor believed he could have asthma. She sent him home with an inhaler and instructions to return in a few days if not better.

Well, it didn't take long to get another call from the nurse. Jacob was not getting better, and in fact had gotten worse. We returned to the doctor, who ordered a chest xray to rule out pneumonia. She also put Jacob on an oral steroid.

"It may cause him to be a little more hyper than usual," were her parting words.

"You do know that he has ADHD, right?" I replied.

"I am so sorry," she said, "Good luck!" and we headed out the door with a new inhaler, RX in hand, and instructions to again return in five days. Luck. We were going to need it.

Let's just say, Prednisone and ADHD are not a winning combination. Jacob was full of energy to say the least. We decided to do the best we could and just get through the five days. Unfortunately that meant many hours of Jacob playing Wii, because it was just easier than scrapping him off the walls.

But the worst part, he was starving all the time. I found him standing in the pantry shoving cupcake after cupcake into his mouth with the wrappers around him as evidence. My mind even contemplated putting a lock on the pantry door. Watching our seven year old in the pantry was worse than any ABC After School Special about bulimia that I remember watching in the 80's.

And of course, Jacob also couldn't sleep. So those few precious hours at the end of the day I reserve for catching up on reality TV and margaritas were interrupted by a completely wide awake Jacob playing basketball at 11:00 pm.

Somehow we made it through those five days.

Besides gaining 3 pounds in that short time, the medicine had worked. I was incredibly thankful when we returned and Jacob's lungs sounded clear and his cough was almost gone. The doctor officially diagnosed Jacob as having asthma, and again sent us home with a different inhaler. This one would become his daily inhaler and be used twice a day.

I didn't give much thought about the inhaler. Jacob had used them before with no problems, so why would this be any different? Usually I immediately read all the warning labels associated with any meds. I naively assumed all inhalers were the same tossing the information in the trash, and Jacob began taking it two times a day.

That's when things got really difficult.

Suddenly Jacob was upset about everything, and particularly upset with his dad. He started hitting again. Arguing with the neighbor kids. And screaming like I have never heard him.

The one night Jacob stood on the stairs and just screamed. He was mad. His dad had turned off the baseball game he was watching because Jacob was supposed to get in the shower. Instantly the baby sister started crying. She was terrified of her brother, and I was shocked as I had never heard him like this before. I removed the baby sister and settled her in another room with Dora, and returned to hear Jacob scream at his dad, "SHUT! YOUR! MOUTH!"

Where was this coming from? We don't talk that way, and all over something so trivial. It's not that Jacob doesn't have these moments. But this was turning into moment after moment, after moment. The entire week had been like this. Was this some kind of turning point? Was Jacob turning into the defiant child I read about that many parents of kids with Aspergers deal with on a daily basis?

The next day was the same. More hitting, more yelling, more arguing. But the worst was the mocking and laughing at everything my husband and I said. That night, my husband quickly volunteered to run an errand for me and then had planned on stopping to see a friend. He needed a break, and I didn't blame him. Jacob had been picking at my husband for a week at that point, and I could tell it was wearing on him.

That night was when I lost it.

I was trying to put on my bravest "nicey-nice" smile, taking a kill 'em with kindness approach with my son. I figured the more pleasant I was, it had to make the evening better, right? My goal was to just get through the night with as little drama as possible.

It was going fairly ok, if ok means that the baby sister was sleeping prior to Jacob deciding to give me a little "pat" as he called it when I suggested he get ready for bed. As I tried snuggling with my son to calm him down, I realized he didn't even care.

I kissed him good-night and before I had hit the bottom stair, the tears were falling. Even good mommies can't always hold it together.

The weeks had been too much. Too much stress, too much yelling, too much walking on egg shells. It had all been too much, and the waterworks kept coming.

I cried for my son, for the fact that I never will know how "real" our connection truly is, nor will I ever know exactly how he feels.

I cried for my daughter, who too often has to play second fiddle to the demands of her brother, and has to witness his meltdowns,

I cried for my husband, and for the helplessness and failure he was feeling as a father, and for the grief he felt for the father/son relationship he had envisioned long before Jacob was born.

I cried for our marriage that typically gets brushed aside instead of tended as it should, and for the wife I had intended to be when 15 years ago we married and had no idea the daily tole Autism can take at times.

I cried for the mother I thought I always would be, but somehow never have the time and energy to do it all, and I wonder every day if I am letting my kids down.

And I cried for myself. For all the times I feel lost in the world of Autism. For all the days when there is no "me" to be found. For all the goals and dreams I had for myself that have been shelved away, much like many mothers.

I know it was selfish. But that night I felt like there was no "me" left to me. Our marriage, our life, our days, more often than not, revolve around Jacob. Typically it is the "Jacob Show" at our house, with Jacob dominating the conversations, activities, and moods of the rest of the family.

Sure it would be easy to say, don't let that happen, make it a priority to tend to those other relationships. That's much easier said than done. We try to find time for ourselves and our marriage, and make special points of doing things with just the baby girl. But more often than not, it all comes back to Jacob whether we realize it or not.

The next day I felt better. Sometimes that's all it takes is a good cry and let it all out to give you the strength to move forward.

As I headed out to work at church that night, I was secretly relieved to be leaving the chaos behind if only for the two hours I would be gone. As I drove, I thought of Jacob and again was worried that this was to become our new normal. I prayed over and over, "Please not my baby boy, please not my baby boy..." begging God to bring the smile back to my son.

And then it hit me.

I didn't even bother calling my husband. I dialed the number for the doctor's office leaving a message for them to call me ASAP.

Sure enough, the inhaler they had put Jacob on can occasionally cause aggressive and agitated behavior in children. The doctor said that it is normal for children with Autism/Aspergers to be overly sensitive to medications.

We stopped the inhaler immediately. The next day was better, and by two days out Jacob was back to normal.

Oh, we know that Jacob will still have his moments. That's our reality. But at least we know that there will be a little break in the action. That there will be smiles and laughter in between the meltdowns. That there will always be a little calm before and after the storm. And together, we will always get through it.

Autism is Not as Simple as Fixing a Roof: My Responses to Readers Comments Regarding 1 in 50 Kids Diagnosed with Autism

Why did I even bother to read the comments? I should have just stopped with the article. It was shocking enough.

New Government Estimate Finds 1 in 50 School Kids Diagnosed with Autism

It's a number I've watched go done at an alarming rate just in the past two years since Jacob was diagnosed. Before it was 1 in 121. Then last years shocker when the CDC came out and said 1 in 88. Even with that number, they estimated it could be much lower. So when I woke this morning and logged into Facebook, the first article I saw said 1 in 50.

Wow. I didn't even know what to think. Half asleep I read the article, but it didn't take long for the comments to jolt me awake.

We have a serious problem here, people. The statistic of 1 in 50 is shocking enough. Some would say it is an epidemic.

But the biggest problem lies in there are still so many ignorant people out there that are completely unaware about Autism. That's the problem. That's what needs to be fixed.

An example from the comments from the above article.

 

"Autism, huh? Ever stop to think that the number of kids diagnosed has something to do with people who get paid to treat kids with supposed autism?

If I'm in the business of fixing roofs, it's in my financial interest to convince you that your roof is in need of my repair services.

Get the point?" -Hk45

Well Hk45, let me tell you this. First off, if someone came to my door out of the blue telling me I needed a new roof, I would indeed get a second opinion. Now if my roof was leaking and it did have an obvious problem, I would inquire as to the appropriate services to fix it. I guarantee no one is going door to door selling Autism diagnoses to parents for their kids. These are parents that are struggling. Parents that see something is off with their child. No one convinced me that my son had Autism. In fact, the opposite was true, and for many years I was told my son was fine. Doctor after doctor "convinced" me that my son was a neurotypical child.  Friends and family all confirmed this. But I knew differently. After an official evaluation and testing, my son fit all the criteria for Autism. But it took years to get there.

Secondly Hk45, let me tell you that more kids getting diagnosed has nothing to do with someone selling their services. Autism services are rarely if ever covered by insurance and they are very expensive. Most people can not afford services for their child, and so instead that child goes without, leaving it to the parents to figure it out on their own. Instead of getting their child the help they need, they remain in limbo, with a diagnosis but unsure where to turn and unable to afford it anyway. A child gets a diagnosis of Autism from a doctor, not just some random storefront in a strip mall. It's the same as someone getting diagnosed with cancer, depression, diabetes, etc. Really, do you think doctors are out there convincing people they have cancer to make a buck?

I am guessing Hk45 that Autism has not hit your family. When it does (because it will) give me a call. I've been there and I know how overwhelming it is.

Get the point?

Or this comment...

"Autism is often a catch-all for any kind of problem encountered in school. I used to teach and most students who didn't "get it" as quick as other kids or had some other form of discontent blamed autism or said, "My doctor said I have...autism, ODD, ADD, ADHD....etc."" -jsoles2001

Oh jsoles2001, your comment saddened me the most. You were (are) an educator! We are supposed to be on the same team! Fighting for our kids! Wanting to make a difference! I have to say I am happy you said the words "used to teach" meaning you are no longer in the school system. How sad all those kids you quickly brushed aside because YOU chose not to believe a diagnosis. It explains a lot and supports what I hear from many other parents who are struggling or feeling they must fight to get the services their child needs while at school, simply because there are teachers like you who feel their own feeling about a child is more valid than a professional diagnosis. I pray that my son never encounters an educator like you, and am so thankful for the school he attends and their patience and belief in him.

And just so you know, my son "gets it" much quicker than other kids when it comes to math, reading, or academics. Autism is NOT a form of discontent.

And again by the same person...

"...A label makes one feel more at ease with not having good social skills - which can be acquired and learned and can build resilience. When someone adopts a label, then they don't think they have to do anything about but carry it around the rest of their life. We are not all the same, but it doesn't mean we all have a diagnosable illness to explain why we are not the same "-jsoles2001

 

Sorry to tell you jsoles2001, but again you are off base. So many parents I talk to who have a child with Autism are very hesitant to get that "label". For years I fought it, not having my son officially diagnosed because I did not want a label. It was only when I realized he was all ready getting an undesirable label by educators similar to you, that I knew it was time to get the correct label. It is easier for you to label a child as a behavior problem and brush them aside, versus a child with an IEP. You and I both know that once that child is on an IEP, there are many more requirements put on the educator. Easier for you to brush them aside. My son's label of "Autism" does not define him. Nor do I ever want him to use it as a crutch. His label isn't there for him. It's there to stop the ignorance and instead raise awareness and understanding for people like you who do not "get it".



Can't forget this one as well.

 

"A phone survey that only counts those who are willing to answer questions -- this seems to over-select for "helicopter parents" - parents who may be overly concerned with their children's lives. And it may also over-select for parents who are eager (for their own reasons) to have a 'special' child with medically validated problems. Anything to avoid ending up with a kid who is basically normal, but maybe not quite as outgoing, or verbal, or coordinated as other kids. There's nothing wrong with normal, but now that is being defined as 'boring,' or 'substandard.' It's like grade inflation for children's development -- if they aren't gifted, they must be autistic." -MattBlanc

 

Oh MattBlanc, you are so off base you have no idea. First off, I admit, I am a "helicopter parent". Not by choice, mind you. I often find myself jealous of those parents who are laid back, unaware of what their kids are doing, and not really caring. You see, I don't have that luxury. At two, my son would take off running in a crowd with no warning. At three, he could open our front door and would be found outside alone. At five, he would run down the street in the middle of the night, terrified of unrealistic fears. Even now at seven, he still will run off for no reason. I have to be very involved in every aspect of my son's life for his own safety. Aside from safety concerns, my son lacks in social awareness. My husband and I are there guiding him through life as much as we can. Teaching him personal space, how to have conversations, how to play with friends, etc, etc. He knows none of the unspoken rules of language that we all take for granted. Tell my son to "hold his horses" and he is looking around for some reigns.

Now I really take offense to you suggesting that parents are eager to have a child with special needs. "Anything to avoid ending up with a kid who is basically normal". Seriously? You honestly think that someone would chose to have their child diagnosed with Autism? That is the most bizarre thing I have ever heard. The next time my son is having a meltdown, hitting, kicking, scared, crying, screaming, over something so incredibly small as a change in our routine, I'll invite you over and you can explain to me how I was eager to have that be a part of my family's life.

I agree with you that there is nothing wrong with normal. But as my uncle likes to say, "Normal is just a setting on the dyer". My son looks very "normal". And many times he acts very "normal".

Your last comment completely shows your ignorance about Autism. "It's like grade inflation for children's development--if they aren't gifted they must be autistic." I hate to break it to you MattBlanc, but more often than not, kids with Autism are extremely gifted. My son taught himself to read at age 3. I never sat down and worked with him on it. He just did it. At age 7 he is very advanced academically for his age, and is gifted musically. There is no grade inflation needed. But socially, yes, he struggles and is years behind.

On the heels of National Autism Awareness day April 2nd, the comments following this article show me how much work there still is to be done. There are still many people who are closing their eyes to Autism. So many people who have their own preconceived ideas and knowledge of the subject, yet lack the personal everyday insight.

It's time.

It's long overdue.

I ask you to please help spread the word about Autism. These conversations are needed to stop the ignorance. Help me make the world an accepting place for my son.

It's time to get real about Autism.

Autism isn't as simple as "fixing a roof".

 

...See More

 

Searching for Answers...and Finding Confidence

 

 

It happened yesterday.

It's been a while since it's happened. In fact, I'm not even sure I can tell you the last time. Which is great, considering it used to happen frequently and with much more fanfare.

Yes, my husband had to physically restrain Jacob while we were out and safely get him to the car.

Which means people were staring. I don't blame them. I'm sure they were curious as to why this child who appeared old enough to know better, was yelling in the store. I'm sure they were right there ready to intervene if needed, as he screamed, "No Daddy!" wondering if indeed Daddy was acting appropriately. I get it. But that doesn't mean I like it.

It used to be a nasty scene, of Jacob hitting, yelling, and just throwing an all out fit. When he was younger, we could simply scoop him up and carry him out of the store kicking and screaming, swiftly putting an end to the moment. We still got stares. Sometimes they were stares of disgust, an all-knowing look of "your kid is a brat". Other times it was a look of sympathy saying "I've been there". But as Jacob gets older the looks have changed, becoming less accepting, and getting him out of the situation is no where near as quick and easy.

I had a feeling yesterday as we pulled into the packed parking lot that it was not going to be a fun trip to the store. Our area had just been hit with a bad snowstorm, and another was looming, so the store was packed. So packed we had to park at the very end of the parking lot.

As always when something is out of the ordinary, I prepped Jacob for what to expect and what was expected of him. We went over how the store was very busy, how we were in a somewhat hurry as we were heading to church after running our errands, and how it was expected of him to stay by us and use walking feet in the store.

I always say that, but rarely does it happen.

We stepped into the store, a big box retailer, and Jacob was thrilled to spy a sample station up ahead. "Samples!" he yelled and took off in search of something yummy despite the fact that we had just finished lunch not ten minutes prior, and forgetting my request of "walking feet".

While I weaved through the mass of people making my way to the pharmacy, Jacob began to fill his tummy and strike up a conversation with the sample lady, an older woman who seemed pleased that this young boy was so interested in her product.

Sure enough after filling my prescription, I found Jacob standing in a packed aisle with the sample lady scouring the shelves for the last box of coconut chocolate energy bars at $5 a box. They found one, and Jacob began filling our cart with boxes of various flavors while the sample lady scurried around through the mess of people in search of coupons for me.

"We are not getting him energy bars!" my husband announced. "The last thing he needs is more energy, and they are $5 a box!"

I knew we weren't getting them. I had no intention of getting them for Jacob. But I also didn't want a meltdown right here in the middle of a packed aisle and with the sample lady there to witness it all. Instead we guided Jacob to the cereal bar aisle, and let him choose whatever he wanted. The aisle was still packed with people and Jacob was adding to the congestion as he went back and forth on what to choose. But in the end, he was happy, I was happy (at $1.50 a box who wouldn't be happy) and the energy bars were put aside.

We passed the sample lady and proceeded to the check out, meltdown squashed before it even started.

Ahh....but I shouldn't have been celebrating a victory so soon. As we stood in line waiting, Jacob noticed the CDs lining the endcap. "Mom, look. They have the NOW 45 CD," he told me. "I wonder if they have the NOW 43 CD here?" Jacob asked.

As I unloaded my items onto the conveyor belt, I notice that Jacob has politely pushed his way to the front of the line. The woman standing there graciously stepped aside as Jacob cuts in line, interrupting the conversation the cashier is having with the woman.

"Excuse me," Jacob says, "Do you have the NOW 43 CD?" he asks the cashier.

"Jacob, get back over here," I say and thankfully he obliges. The cashier clueless as to what my son had asked, continues on and the woman pays for her items.

"But mom! I just want to know if they have it!"

As the cashier begins our transaction, I explain to Jacob that the cashier couldn't possibly know if they have a certain CD in the store. And then opening my big mouth, I tell him that only the people working in electronics would know the answer.

Jacob was off.

He was heading for the electronics department, determined to get his answer to if they did in fact sell that CD. He had no money of his own, and he knew we don't just purchase items for him for no particular reason. But he had to know the answer, and he was off to find it.

My husband took off after him as I continued checking out. It wasn't long before they returned, my husband gently guiding Jacob toward the exit. As we moved as a family together, me pushing the cart with the baby sister in it, and my husband physically holding Jacob by the shoulders helping him walk, Jacob began to yell, "No Daddy! No!"

Of course people looked. Out of curiosity. Out of concern for this child. Out of judgment. They looked and stared, and my non-reactive husband did what he needed to do. He kept hold on my son for his own safety and walked him toward the door.

The stares don't bother me like they used to. For the most part I don't even notice anymore. When Jacob is having a moment my focus is on him and his safety. But for one moment as we passed the Starbucks located by the exit, I happened to look up, and I saw the sea of faces looking our way.

"Just get to the car," I kept thinking to myself. But we had an entire parking lot to walk, a parking lot full of impatient drivers trying to stock up for a snowstorm. None of those drivers were concerned about my son's safety. Their minds were filled with finding a parking spot, or their list of items needed if they happened to get snowed in for days. A child darting out of nowhere was not on their radar. But that was all that was on my mind.

In situations like this my husband and I both know how Jacob will react. He's a runner. And he wanted nothing more than to run back into the store to find his answer. And boy was he trying to get away from my husband.

"Daddy, let go!"

"No, Jacob, there are too many cars and I want you to be safe," my husband replied again not reacting.

"I promise I won't run, Daddy!" Jacob replied.

My husband wanting to trust our son loosened his grip slightly, just enough for Jacob to wiggle loose, and sure enough he darted out into traffic.

I screamed at my husband to grab Jacob. Thankfully he was fast enough and got hold of him again just as a car came barreling down the aisle.

I didn't care what people thought of us at that point. I didn't even know if anyone was looking at us. All I wanted was my son safely in the car so he couldn't bolt at a moments notice. I wanted him safe.

"Just get to the car, just get to the car..." I repeated in my mind.

We got there, finally, after more attempts at running, more yelling, and more chaos.

As my husband and I reflected on it later, we realized we handled it poorly. Sure we didn't react, not like we would have years ago pre-diagnosis when we were frustrated and unsure what was going on with our son. We've learned to keep our emotions in check when Jacob is upset. When we escalate, it only escalates the situation more. So we did a great job remaining calm despite how upset our son was about not finding the answer to his question.

In that regard we have come a long way. We've learned a lot on how to handle difficult moments with Jacob. With each meltdown, tantrum, or fit, as we dissect it after the fact, we realize what WE did wrong, and how to be better for next time.


What if we had simply let Jacob ask? What if we had waited those few extra minutes as he politely asked the electronics employee if they had the CD giving him his answer? Sure we may have been a few minutes late for our meeting at church, but Jacob would have been satisfied, and he would have walked out of the store on his own.

It wasn't Jacob's fault. He couldn't stop. He HAD to know the answer right at that moment. There was no reasoning, he was on a mission, and he needed to complete it. And we foiled his plan.

The silver lining in all this is, here is this sweet, polite boy who has enough confidence to ask the sample lady where her product is located. Confident enough to kindly ask the cashier for assistance. Confident enough to march over to the electronics department alone to find his answers. It doesn't matter where we are, the library, the store, a neighbor who happens to be outside, Jacob will not hesitate to strike up a conversation. It's times like this I am so proud of him. A boy who at seven struggles buttoning his pants, or opening a straw, yet believes in himself enough to seek out answers on his own.

So today I am joyful for my son's confidence. I am thankful for the great partner I have in parenting our son. And I am humbled in knowing that we will never have all the answers to parenting our son. And that is ok, as we continue to learn something new from Jacob every day in this journey as he searches for his own answers.

Valentines Smalentines!

I dislike school parties.

The funny thing is, before my kids were in the school system, I had visions of me being the perfect room mom. It was totally my thing. I love to bake, crafts, games, all of it. As a kid, I had loved school parties filled with cupcakes with too much frosting and games of "Heads Up 7 Up".

But not anymore. I detest them.

Yesterday was Jacob's Valentine's Party at school. Of course, the first thing he asked when he knew about the party date was if I would be there. And of course, I said "yes" not wanting to disappoint my son or have him be one of the few kids without a parent there.

The party itself was fine, your typical school party with cookies, treats, and bags decorated with hearts and filled with Valentines. There was a craft that Jacob struggled with and didn't want to do, but finally he did glue two googly eyes on a heart and made a smile, a half hearted attempt at a Valentine for the baby sister. And there was a game, that again proved to be a challenge for Jacob where he was to suck through a straw and pick up conversation hearts. But as I looked around, I realized that Jacob was not the only one struggling with this, and it brought some relief.

But the real reason I dislike school parties is, it is quite apparent that Jacob is on the outskirts.

In October when I helped with the Halloween party, Jacob's teacher had announced that the everyone could shift their chairs around to sit near a friend for the party. As I watched Jacob trying to figure out where to go, my heart hurt. No one was calling out, "Jacob, Jacob, come sit by me!" He ended up scooting his chair closer to a group of girls in the back who thankfully seemed ok with it.

It's always been like this every year. Thankfully this year his classmates are much more tolerant and accepting of Jacob. In past years, I witnessed kids being just plain cruel to him at parties. Many times, they wouldn't hesitate to tell me that Jacob annoys them, or they would ask questions, "Why does he make that noise?" or "Why does he always talk about baseball?" The worst was when a boy in his class walked up and yelled as loud as possible in Jacob's ear, knowing how Jacob did not like loud noises.

So yes, it could be worse. Jacob's new school has been a good fit for him. And his classmates are good kids. But as a mom, that doesn't make it easier seeing the rest of the class connected, and your own child alone.

Oh, I try to connect with the other moms hoping that will help. But it seems like they are all connected as well. You can tell that they know each other outside of school from playdates, birthday parties, or sports. And as much as I try to connect, it just doesn't happen for whatever reason.

The thing is, Jacob either doesn't care, or doesn't notice, I'm not sure which one. On the way home from school after his party, I asked him who he liked spending time with in his class. He told me "no one really". He then changed his mind and named two girls that were nice. But the thing was, it didn't seem to bother him.

So I know it's my problem. It bothers me. It's hard to see and it just tears at my heartstrings for my son. Why? Because I think that is every humans desire, isn't it? To connect? So if it doesn't bother Jacob, and he doesn't seem lonely, and he seems happy, why can't I let it go?

Because I want that for my son. I want him to have those connections. Those true friendships. And I know the importance of friends.

We try to help Jacob socially.  He doesn't always know how to interact with his peers. He wants to be their friend, but many times his intensity pushes them away. So my husband and I usually take on that role of helping him make that connection with other kids. But it's hard to know when to give that gentle push, and when to realize it is ok.

Yesterday afternoon, when we pulled up to our house, Jacob saw about 8 kids from the neighborhood playing basketball. He quickly exited the car and ran down to join them as fast as his legs could carry him. For the next hour off and on, I checked on him, finding him still enjoying himself playing basketball with the neighborhood boys.

But after about an hour, I looked outside to find Jacob in our front yard with his yellow plastic bat hitting whiffle balls across the street. I could tell he was deep into his own make believe baseball game, imagining he was all of his favorite MLB players.

As I looked down the street, there were all the neighborhood boys still playing their basketball game, while Jacob was doing his own thing.

Jacob finished his nine innings, and came loudly through the door. I asked him why he had stopped playing basketball with his friends.

He answered matter of factly, "Because I wanted to play baseball, Mom."

He had chosen to be on the outskirts. He had played with his buddies, but he was done. He wanted to be by himself doing what he loved most. He was ok with it.

Now I had to learn to be ok with it, too.

It Was Time

It's hard for me to believe it has been a year since I started my blog. Time goes so fast. No matter how hard you try to hold onto it, it slips away unnoticed.

I admit that a year ago, more days than not, I was wishing them away. We were in a bad place. Jacob's anxiety was at an all time high. Our life was in a tailspin and we were just barely staying above water.

As much as I would like to slow time down to remember each smile, laugh, and moment with my children, I can't say I would want to return to where we were a year ago. The days were long, the nights even longer. Time couldn't go fast enough. Every night was a meltdown filled with screaming, crying, hitting, and pure fear. Jacob was scared of everything at the time. I remember thinking, "Is this our normal? Is this going to be our everyday for the rest of our lives? Is this all our baby girl will know growing up as she observes her big brother?"

Last year, Jacob's meltdowns started coming more and more frequently and lasting for hours. The littlest things were setting him off. Nights were awful as Jacob's anxiety was at a peak. Every night he would cry sometimes for hours about things that scared him. And it seemed like new fears were popping up out of no where. It felt like our world was spinning out of control.

It was time.

As much as my husband and I were opposed to medicine for the longest time, we knew something had to be done. We had a prescription for anti anxiety medicine for Jacob before. We had even filled it, but after reading all the scary literature that comes with it, we opted to wait it out. But this time was different, something had to be done. Jacob's doctor had told us we would know when it was time. Our life was being upset daily at this point. It was defininetely time to give medicine a try.

No parent WANTS to give their child medicine, particularly one that could alter their personality and has tons of undesirable side effects. Jacob had never even had cough medicine in his life, and here I was going to give him something that came with a warning sheet from the pharmacy, which of course brought new worries for me.

Would it change my son including all the wonderful things I love about him? Would it make him sleepy as it suggested or change my energetic son who is always on the go? Would his tummy hurt like the pharmasist said to expect? Would my little boy no longer be the same from this day forward?

All those thoughts were racing through my head questioning if we were making the right decision as I helped my son with the syringe giving him his first dose.

That first day was hard. I was a wreck nervous for all the possible outcomes, referring back to the possible side effects sheet numorous times. But with each day it got a little easier to give my son his medicine, to where soon it became old hat.

And with each day, the meltdowns became less, the fears subsided, and my son's smile returned. 

I'm not saying medicine is the solution for everyone. I still have a love hate relationship with medicine for my kids. Sure anti anxiety medicine changed our life for the good in so many ways, and I am grateful for that. But I am still leary about giving anything to my kids.  In fact, we have a prescription for ADHD medicine that we have had for close to four months yet to be filled. We just can't do it, add another medicine to our child. I've read too many horror stories. Like our doctor told us before, we will know when it is time, and right now, it's not time.

But I know not to get too comfortable. I don't even let myself think, "Is this our new normal?". Instead I continue on the journey given to me enjoying each day and treasuring every moment while time continues to slip away.

And I thank God each day that we are in a good place, a much happier place than we were a year ago.