An Endeavor Well Worth It

One early Saturday morning or late Friday night depending on how you wanted to look at it was when we called our friends and family to come and join us. Music played in the background while we talked about all kinds of things and patiently waited for the big moment. We all watched the sunrise, through the window of the medium sized room that we sat in. Everyone was excited, but also calm and relaxed. My husband, mother, sister, closest friend, and sister-in-law were all there beside me the whole time and for a short time my brother-in-law and my sister’s friend even stopped by. After what seemed like forever on that beautiful Saturday morning, July 9th, 2011, my life changed forever when I gave birth to a five pounds ten once boy. It was great to finally have him in my arms. The problem free pregnancy (besides him being born a month early) and easy, pain free, natural labor was sadly not a sign of what was to come next.

The first week of his life he was healthy. He didn’t have to go to the NICU or even have jaundice. However, one thing after another happened after that. We first encountered projectile vomiting almost every time he ate. We tried multiple medicines for acid reflux and nothing worked. He was tested by ultrasound for pyloric stenosis, a stomach condition that requires surgery or death. My tiny baby was not allowed to eat, which was heartbreaking. He was laid on a regular sized bed which made him seem smaller. Then the tech used the smallest tool for the ultrasound which engulfed his abdominal area. They decided after testing that had a dairy intolerance. I cut dairy out of my diet and he got better. By the time he was four months he started to have difficulties breastfeeding and had even more problems with a bottle. This was a very painful time emotionally and physically for me. I endured toe curling pain for my child. We soon learned the issue was caused by a tongue tie and lip tie. It took until he was six months to get them clipped. There were no immediate changes and since he had no weight gain while waiting to get them clipped and weight loss after we were referred for feeding therapy. I continued my classes again when he was six months old, so doing feeding therapy and my classes was a lot for those three months. I learned to manage my time well. When he turned eleven months he was old enough to have his hypospadias surgery that fixed the deformation of his penis. During the surgery I paced anxiously. Two hours later the urologist came and got us. He said everything went well. I had roommates who criticized me for putting him through surgery and for getting his partial foreskin hood removed, but I pushed through as I knew what was best for him. We celebrated his first year and we hoped for better years to come.

Even through all of the pain and suffering that we endured as a family, my husband and I would never trade it for not having had him. Soon after his first birthday, we were still having acid reflux issues and added to that an aspiration issue when drinking liquids. This was discovered, though an x-ray which they strapped him down and he screamed and I could not help him because he needed the test. We had to get drink thickeners, it was really expensive, but for the safety of my child the sacrifice was made. He had leg x-rays, which again he screamed with, when he finally started walking at 16 months because he was walking with a strange gate. Thankfully nothing was wrong. I joked with my son that he was not allowed to have anything else to go wrong because mommy wanted a break from medical exams. My heart broke when he had to go through all of it and I knew he hated it, too. I started to notice social and emotional differences in him before he turned a year old and I just assumed it was because he was born early. When he was eighteen months we made an appointment at Hope Network Center for Autism. This started us on a whole new journey that began two months later.

The biggest life changing thing that happened to me besides having a child, was hearing that he has autism and that it would be a lifelong disability with a varying possibilities of functioning. It was not a life changer in that my son changed. He was the same child that I wanted so badly after I had a miscarriage and he was the child I loved and wanted so much after he was born and the child I still wanted when we went through all the difficulties his first two years of life. It was an internal emotional change that happened. I went through a time when I grieved for the loss of what my child may have become. When you have a child, you have all these hopes and dreams of who they may become and what they may do and then you hear that it might not happen; that they might not get to do all that you dreamed or hoped for, it crushes you. Not because they made the choice, but because they have a lifelong disability that prevents them from making that decision. After I went through the process I came to the wonderful side of acceptance. I loved and accepted him for who he was now, not who he might become someday, or the growth he might or might not make. I accepted him for exactly as God made him. I accepted him for all of his difficulties, not knowing what his strengths might be someday. I loved him and still wanted him. He was completely mine and I would not want to trade him or get rid of him, he was still what I wanted.

Having a child with autism was one of the most meaningful and special things that has happened in my life. My life may not be the easiest, but we all have struggles; No matter if you have a child who has a disability or a child that doesn’t, whether you go to school, go to work, work as a stay at home parent they all have their challenges, different challenges, but they still have their challenges. In some people’s eyes, I was seen as a super mom for all I had done, but with my own eyes I had not always seen it. I did what was needed to help my son function daily and strived to get school work and house work done. Having a child with autism uncovered a whole new part of me. It first started with my ability to stand up for my son and what he needed. The road to getting his diagnoses of autism was not quick and easy we were told by early on they would not diagnose him because he was not old enough. His pediatrician was thankfully not of that same mindset. I learned to stick up for the fact that what was happening was not just a tantrum or that he was in any way spoiled, but that he was having a sensory overload meltdown. This in return taught me to stick up for myself, my parenting and other choices in my life. Through learning how to stand up for myself and my son and what was best for him and our family I had many friends recommend that I should share our story of that and swimming to help inspire others in many ways. Inspire them to fight for the diagnoses, to fight for their child’s needs (a child with autism has sensory needs along with the normal needs) to educate themselves on their child’s needs because with understanding comes patients, which was another thing that I learned from my son, to find what helps meet their child’s sensory needs and what helps to stimulate them in a good way and what over stimulates them, and to just otherwise show that they are not alone and you can fully love and accept your child with autism.

I took the advice of my friends and created a blog titled Just Josiah J. -Autism Adventures (this blog). It started simply enough by being shared with friends and family. I started talking about our adventures in swimming and then branched out to talking more about autism as well as myself. The blog has now had close to 9,500 views. Shortly after I started the blog, I found it would be easier to share it with strangers who wanted to know more about swimming and autism if I created a Facebook page this would also let everyone know there were new blog posts. I was able to use the page to share little updates and pictures from when we went swimming and other adventures we went on. The page started out small with just mainly friends and family and it has grown to nearly 2,000 people. I had gotten comments about how the page or blog has helped others learn what autism was and gave them understanding and acceptance of those with autism and from other parents who I had helped in many ways. About a year later I created a local support group because the Grand Rapids area did not have a parent group online. This had helped nearly two hundred fifty moms and dads, we had just recently expanded the group to not just moms, but dads too. I was glad that I stepped out of my comfort zone and created the local support group because I got comments all the time about how helpful it had been to just be able to talk to other parents and get ideas on how to deal with different behaviors.

The best gift of all of from this whole journey, besides having a wonderful son and getting to help many people, was that I discovered even more about myself. I discovered through my walk through the world of autism that I was on the autism spectrum, too. It answered so many questions to why I thought differently and why my senses were a lot different from other people. When I found out it was an ah ha moment and was such a relief to know what makes me the way I was. I was glad to have gotten a better understanding of myself and my son. Not a perfect understanding because each person with autism is as different from each other, as each person who does not have autism is from each other.

Supermom

I guest post from Em's Journey. You can find her on facebook here and find her blog here.

I am by nature fun loving, easy going with a touch of high strung at times, and I avoid conflict at all costs if at all possible. Conflict gives me anxiety. I struggle to confront situations that I need to and it builds inside until I feel like I’m going to explode. I’ve had my share of crying jags because I just can’t keep that mask of “being ok” on anymore.

I’m the person you meet and by all appearances, think she’s confident, articulate, and empowered. I carry myself in that manner. I’ve been called a Rocking Mom, Supermom, Wonder Woman, and any other alter ego that you can think of more times than I can count or remember. However, if push comes to shove, I cave.

Contrary to how I appear, I’m not confident in who I am or what I am capable of. I sometimes become so cripplingly inarticulate that I shut down. Here’s an example from just this morning. I had to take a test at work. I struggled to learn the material. I didn’t know how to get the information in my brain. It’s something that all employees have to know. I didn’t know how the test was going to be scored. I almost cried taking my husband to work. I was scared how I would do and freaked myself out all the way to my work. In the end, I did pretty well on the test surprising even myself. It’s when I allow those things to happen, to freak me out, empowered is nowhere near my personage.

That is unless you push my temper too far, or put my family at risk, and then I’m an atom bomb. It doesn’t happen often. When it comes to my children, Christian and Emelie have yet to find me back down from a fight. They know I have their backs, and when they are wrong, they hear it. Being a mom is never easy. Being a good mom is more than not being easy but rather a balancing act. Being a “Supermom” is being able to love your kids enough to enact “tough” love, to teach them respect and empower them, teach self discipline and fight for them against all odds.

I’ve come to that crossroad where I need to reconcile my two natures. I have tried for almost a year and reconciling my two natures is not easy. Being honest about who I am is hard enough because that means I’m taking that mask or facade down. I’m scared to be me. I want to show you who I want to be. For myself, I need to figure out how to be that person. I’m trying to be that Momma that everyone sees and knows that is in there. She’s deep down and letting her out scares me to death. Yet, I do it all the time in my own home.
I know who I am. I can be free to be myself in my own home. I am deep down, who I want to be. I have to trust myself to allow that confidence to carry over and maintain that empowerment. I know how to convey a message. I also know how to make my point and get it across tactfully the first time. It’s when it’s ignored that I need to allow Super Mom to step into her God given role. Raising our children to be productive members of society with adherence to cause and effect relationships. That is including consequences. That “tough” love has to carry over to include those that deal with our children.

I was talking with my friend Karen, bemoaning this topic of having two sides of me. How I felt like a Jekyll and Hyde. How it feels so “off”. She summed it with a good analogy. We are all a three sided coin: Top, Bottom and the Edge. Which side someone wishes to experience depends on how they treat us. It gives new meaning to being edgy.

Overall, I've discovered I’m ok with my two natures. I am trying to balance on that edge, but it’s ok to be both sides of me. As long as I remember to also be honest with myself as to who I am, and what I am capable of. Becoming that Da Dada DA SUPERMOM is easy because it’s in my nature. Letting her out, that’s where I need to let go of the guilt. Recognizing, I was balancing her, and was tipped on my side and this is the side chosen.

I think that the same can be said of many moms and dads out there that struggle with empowering themselves to be Super Parents. In actuality we aren't Super Parents. We are parents of Super Kids. That’s it plain and simple. We are Super Parents because that’s who our kids need us to be. Sometimes we go overboard and need to learn to step back. We need to learn that they have to fall. We have to be there to help them when they do.

The best part of all of this is that it feels kind of good too. To know that I’m not alone and that it’s not ok for now. Yet I know it will be, someday. And for all us parents having these same thoughts, we’ll know that our children will never be able to say that we gave up on them, EVER. Nor will all those other Super Parents out there because we see how each other fight for them. In reality, we aren't that unique. Really! Ask ANY parent who does what they need to do when they need to do it. They’ll tell you because if we don’t, who will.

20 Reasons Why I Love Him

I know valentines day is done and over with, but I wanted to post something on our anniversary of when we officially started dating 7 years ago today, so here goes...

There are many more reasons for why I love my husband, but this is what I came up with for this post. This post has been really hard to come up with things, not because I do not love my husband, but the whole putting it into words that make sense and can be categorized. Love in its self is a hard thing to describe. I have an even hard time already describing emotions and feelings, so this is completely out of my little bubble and I know my husband can truly appreciate the gesture.

1. God Sent Me Him

I feel that God brought us together to be friends at first and then to be married like we are now. We both feel this way. We were meant to be together. We belong together. Through ups and downs in life we have been there for each other with God as our foundation and it will continue to be this way. I spent a year away from dating or even thinking about who I should date to find out what God wanted for my life. That is when he fell into my life as my best friend, which brings us to number two.

2. My Best Friend

He was my best friend before we started dating and still is my best friend. I would talk and talk to him from time I got done with homework (met when I was 16/Sophomore in high school) to the time I went to bed. We don't so much get he luxury to do that now days with Josiah(Little Man/LM) running around, me going to school, and him working, but I still love talking to him about our hopes and dreams. Talking about the here and now as well and hope that we can stay this way until one of his leaves this earth and that will only be a temporary separation, as I know we will be together again on the other side.

3. He Is My Other Half

As cheesy as this sounds he is literally my other half. The Jelly to my peanut butter(or some other alternative to those with peanut allergies) or how ever else you want to put this statement. He is my other half because I am the thinker and he is the emotions and even though this may be frustrating at times, it is what makes us work great together. When Josiah has had to have tough things done like a tongue tie and lip tie clipped I was he one to be there because Jason said he would be too emotional to do it/would want to hit the Dr. for hurting him. I am a very shy reserved person and he is partially shy as well, but when it comes to speaking up to certain DRs about stuff that I would rather ignore to avoid confrontation he is all there supporting our rights and decisions.

4. We Are In This Together

I love that we ware in this autism adventure together with Josiah. He is a part of his therapies and Dr appointments. I do not have to try to juggle it all myself. I have someone to stand by my side while we go through life. It is much easier to navigate through all the specialists and paper work when you have someone to help. He goes to all the appointments with us, I mainly fill out paper work for everything, but sometimes he fills in some stuff as well. He is en every part of what we do. He loves to come home and see Josiah's swimming pictures and other pictures from our day that he missed while he was at work. The FB page has both of us as admins and he loves to see all of the comments, likes and messages just as much as I enjoy to see the support. He may mostly be a silent observer with the page, but he is there. 

5.-7. Views On Gender Roles, He Love Me For Me, He Understands

I do not know how to separate these three without repeating myself over and over, but feel all of them deserves a mention. I love that he does not feel that gender roles should define us. I would feel extremely trapped if I was the stereotypical women. I do not wear make-up and I hardly wear dresses/skirts. He loves it when I do, but would never push the idea of me having to do it more often then I choose to do it. He knows that the way I get my energy is in very small groups or even by myself so he gives me my space when I need it. He does not feel that just because he works outside of the home means he gets a free pass on household jobs. We both do what we feel is best for our family as with what we do around the house. When he does stuff it is not just because I asked him to, but because it needs to be done and more times then not does not even need to be mentioned. I will do his chores at times and he will do mine depending on what is going on in any given time. He understands when I am in a do not touch me mood or a kiss is too much. Sometimes just a kiss feels like I am being smothered and he is very understanding of when that time is and I absolutely love that about him.

8. He Is A Wonderful Father

It is very easy to add into the no gender roles with making him a wonderful father^^. He lets Josiah be himself even if that means wanting to dress up like a fairy for fairy garden day. He did not tell him he could not do it because fairies are for girls. Just like he has never told Josiah that play kitchen's or dolls are just for girls. Josiah has dolls, play kitchen, trucks, cars, trains, and all kinds of things in between. It is what he likes and enjoys not what he should be. He is there for Josiah. Yes, there can be times when he gets a little more frustrated then I will about something, but it is evident that he trying and that Josiah LOVES him so much. When daddy is home on the weekend it is hard to separate those two as Josiah wants to soak up every min with him.

9. Service

I love the fact that when I decided to serve at church for school that he joined me and that he is by my side there every Sunday helping me teach the class. He is my other half in the classroom as well. we work so well together. I do the story and he does the song. I do the water he does the snack. We do not even have to plan or talk to each other about what needs to be done, we just know how we need to do it. We sometimes even switch between what kids we are playing with if we know that the other person's personality would add to the situation. This kind of thing makes me love him even more seeing him in a situation where we can share about God to a room full of children and just connecting weather it be through words or not. I could have just served on my own for class, but he is there by my side which is wonderful to have my other half there.

10. Foot Rubs At Night

Foot rubs or back rubs at night. I love that if I am laying in bed and my feet itch and he knows they do, he just says "give them here" and puts lotion on them/gives me a foot rub. He offers to rub my back and or neck if he realizes I need it. I do not have to say anything and rarely request to have either done, but really do enjoy it when he offers. To go along with this putting pressure on my legs and feet when I need it. I can not explain at all the feeling I have at times in my legs, but all I know is pressure/ weight helps make it go away. Thinking it is a stimulation issue and I used to think it was possible anxiety, but the anxiety only comes if the horrible feeling does not go away.

11. Support

I love him for his support that he gives to me. Through the times when I had night after night of the whole anxiety thing where I kind of went into myself not to be found, but he brought me out of it and I am happy to say I have not had problems like that in a long time. Of course only after having Josiah have I learned about meltdowns and all the different ways they can present. He has supported me with breastfeeding and all kinds of parenting choices that we have made together, but that I end up with the choice more then him. Like with breastfeeding we both think it is a great choice, but I am the one doing it and he is my wonderful supportive husband. He is also very supportive of the other people around him. I am more then willing to share my supportive husband when the need arises. We have some friends that used to be just my friends that are now both of our friends and they love to go to him for help specially when they need a more emotionally supportive role. Like I feel bad when something happens, I just am unsure as to what to say to a person. Not because I do not care, I just have the hardest time coming up with the words other then wow that sucks, sorry to hear that.

12. Kind Heart

The whole support thing brings me the the fact that he has a kind heart. He is a very caring person. He hates to see people hurting. This goes along with his heart for service, too. He sometimes will get frustrated because he can not help a person he wants to help, so it all comes out completely wrong then how it was supposed to come out.

13. Kiss Goodbye

I love that him and Josiah always gives me a kiss and sometimes a hug goodbye before they take off somewhere even if it is just the the store down a block from our house.

14. Good Worker

He is a good hard working at his job and sometimes takes the leadership position on his shift when needed. He has gone in on vacation days when he was needed. He always strives to be honest and work his hardest even if others are not. He is also a good worker at home (when it is not nap time).

15. Check-ins

I love that when he is at work he will call or text to let me know how he is doing or ask to see how me and Josiah are doing. He also will know then if we were having a bad day or night and I know if he had a bad day at work. We also will know if each other had a great day or things that Josiah accomplished, so he does not miss out on things while he is working second shift. If he was not napping during my classes I would be checking in on breaks as well, but Josiah is in therapy and he is napping, so all is quite during the time that I am away. I have sent him pictures of food and drink that ended up all over the floor due to a Josiah freak out or things we colored or painted before he destroys them. This is one of the many reasons I take so many pictures and videos, so hubby can play catch up on what happened while he was at work.

16. Sleeping in

I love that on Tuesdays and Fridays if there is no need for me to go to Josiah's ABA therapy I am able to stay home and sleep in. In return he sleeps an extra hour Mondays and Wednesdays and he naps the two hours that Josiah is in therapy 5 days a week. We both try to help each other get the most rest we can so we are able to handle meltdowns and tantrums a lot better from Josiah or have more energy to do fun activities with Josiah.

17. Washing My Hair

This has got to be my kryptonite. I know for some the sensory might be too much and for others it might not be such a big deal, but I love it. I suggest that every man tries at least once, to wash his significant others hair. Anyone should wash their significant other's hair/head at least once. I know my hubby loves it when I wash his hair/head (sometimes he shaves it almost all off like picture below). Specially if the women has long hair. You would not believe the time and energy that is taken into hair even if it is just brushed out like I do. Imagine the time that is put into curling or straitening for some women. The feeling of just being able to relax while one tasks that you may sometimes dread is being done for you is partially why it is amazing. The other part is when you add pressure and massage the sensory sensations are all out wonderful. I can see why most kids love to have their heads washed (I say most because for some with autism it is a sensory nightmare).

18. Taking care of me when I am sick

This took place yesterday. I gave him a call to pick me up from class early and got Josiah ready as soon as possible to get me. He even brought a bucket encase I got sick on the way home. He got me seven up and ginger ale. Got me water, blankets and a heating pad. He took off work to watch Josiah while I spent the afternoon in the bathroom, head over a bucket or sleeping. 

19. Respectful

He has always been very respectful. Before we were married he respected wishes not to do certain things and not to move to fast. He respects wishes to not do things now that we are married as well. I am his love, not a piece of property to be owned and used however he wishes. That is one of the reasons I love him so much. He was extremely patient and respectful of issues I had after Josiah was born. Through that patients and respecting that sex was painful and just not going to happen we grew even closer to each other. 

20. Just Because

I love him because I love him. When all else is going wrong and nothing seems right, I still love him. Even when I am mad at him, I still love him. This makes it so we can not be mad at each other for very long. I look forward to spending he rest of my life with him and loving him just because. 

P.S. to my hubby are you happy I told you no peeking and you have to wait until Tuesday to see it!

Social Situations

Hope for Josiah

I really hope that someday Josiah will be better in social situations then I am.  I dread group projects or speeches. This past semester was a great experience because I did have a group project. I have I guess just like Josiah had social opportunities when he is swimming to talk to people. This has helped me to open up to people a little, but still does not help much for me as it does him. I see changes in his social ability which is great. For me it takes for ever to get used to anyone. Sometimes I will say nothing just nod or say a few words when people are talking to me in person or even on the computer (typing is so much easier). Other times I will talk and talk and talk. Depends on the subject for the most part. Most of this social awkwardness does not apply to when I am with family and by family I mean my immediate family.

The Questions

I will more times then not walk away from talking to someone I do not know well and think: Did I say something stupid? Did I say what I wanted to say right? Did I break some social code I was not aware of? Did I say something the wrong way? Are they board or are they interested in talking? Am I talking too much? too little? too quite? too loud? I will even think back on something I said days or even months or longer and wonder if someone still thinks about how stupid I sounded (if I figured I said something that came out wrong).Logically I know the other person would not be thinking back on something so far back or even something I said not too long ago, but I still am like "grrr that totally came out wrong, social fail again, I wish this social stuff was so much easier then it is". This thought is not easily pushed aside when I have heard people say stuff about what I said. What is so sad is that even in the autism community negative things have been said, even though if their child was in same situation they would hope for acceptance. That in its self is kind of sad, that they want to scream acceptance for their child, but not accept autistic traits in an adult....their child will someday be an adult.

The Learning

I often will ask my husband did I write that out well/does that sound good/does that make sense when sending stuff to some people. Or will ask a friend is it ok to say this or that to (fill in who they are to me) and get opinions from other people on if it is socially acceptable or not. I have learned this way throughout the years. I have learned how to be social even though ti does not come naturally or anywhere near natural to me. I still wonder if I am doing it right. It is like if you learn how to  do something new and you check with your teacher to see if you are doing it correctly, but for me there is no social teacher out there. Josiah with his therapy has had help with learning at a younger age from his therapy which I know will do him much more good then me just navigating on my own. I have always just put my social awkwardness off to being shy and abused and nothing more then that. Now it kind of makes sense. I can remember when I was a kid not wanting to talk to people and so my parent's solution was to force me to order my own food if I wanted to eat out or to talk to whoever we come into contact with. I still will ask hubby to ask the waiter for something if we are out and part of this is because it makes me uncomfortable and another part of this is because well, I have not made eye contact with them once so I honestly could not pick our waiter out from the crowed of workers.

Situations

Other situations other then eating out that this becomes a problem. Well loads of places. Having to talk to a teacher about a problem I have. Questions are easier if done after class and not in front of everyone, so even being asked to express something by the teacher in front of class becomes a problem. With LM's Dr's for ex. The GI and WIC lady who are both so strong minded.When someone is so strongly opinionated and a very dominating person it makes it really difficult to get a single word in or to do anything other then sit and agree, even if I do not agree. I will a lot of times let things go like calling me by the wrong name or something just because (I honestly do not have an explanation for this one). I have issues starting conversations with people or sometimes even keeping a conversation going. I might go over something over and over and over in my head before I actually say it to someone. These types of things are exactly why there are studies out there about women who have autism finding themselves in abusive relationships more then the average. I myself have been there and am very happy to be with caring, loving man at my side now. Not out in front of me dragging me through whatever crap he sees fit to drag me through like my abusive ex that I met at way to young of an age. I am so happy hubby and I started to get to know each other online; otherwise, not sure how well meeting him would have gone. We are both kind of shy. The very first time we met in person he probably wondered why I was not talking to him hardly at all. I have opinions on things, but it is extremely hard for me to express them. I find it hard to for ex point out if a carseat is being used wrong according to the manual (even if the baby's life is at stake). Even though I am nice and do not think badly of many people I have still been called a cold person. I have still been called rude and other negative qualities I do not try to be, want to be, or even knew I was doing.

The Good

I have spoke up to some people about this when out and about and in the end I feel like adrenalin is rushing through me and I half stalked them before even bring it up. I have stood up for my ability to breastfeed my hungry baby in public. I have stood up for my son when he has needed someone to speak up for him. I have advocated for him far better then I could myself. This blog was created for him and I have expressed tons of stuff about him, but have never talked much about my self. Through my time with God(took a year off of no dating and no looking for anyone) and myself, getting married, and having Josiah I have found more of a voice for the people in my life and for myself. For the ability to say NO, I will not do that just because I am a nice person (I still kind of struggle with this one a lot, but is possible to say no sometimes now).