The Lord's Hands and The Autism Fight

I have a friend who just had her fifth baby (her oldest is seven). Her husband is currently deployed and she is still recovering from a c-section. Today she was watching one of our friend’s daughters and I went to pick up the little girl from her house. As soon as I walked in, my friend could see in my eyes that I was having a difficult time so without hesitating, she wrapped her arms around me and told me that it was going to be okay. After talking for a little bit, she told me she wasn't going to let me take our friend’s daughter because I needed to go get myself some lunch and have “me time.” This friend doesn’t take no for an answer (she never has) so I went on my way, telling her that I’d only leave if she let me bring her back some food.

I did get the food. But I also got a call from the therapy program that we are trying to get Ethan into, letting us know that there had been a mistake with the referral and that it was being denied by our healthcare. Almost immediately after, I got a second phone call from the insurance office telling me that they haven’t received all the necessary paperwork they need to get this therapy covered. Not the phone call I needed today. I spent every single day last week at the hospital for appointments and paperwork and meetings just to keep getting sent to a different office because no one felt like taking the time to just help us. I am not a fighter by nature. I don’t like fighting. I don’t like demanding. I don’t like causing a scene. I have had many people over the past few months tell me that I need to “get good at it” because life with a special needs child is all about fighting and advocating. Is it REALLY? It honestly breaks my heart to hear them say this. Why should I have to fight so hard for my son to be given the help he needs? Why are these children being put on the back burner when they are our future? I realize that autism wasn’t as prevalent back when most of these doctors were in school and were just starting their careers. But the most recent data [according to the CDC] estimates that 1 in 68 children (and 1 in 42 boys) has been identified with autism spectrum disorder. These children won’t stay children. In 20 years, 1 in 68 ADULTS (if not more) will fall under that ASD umbrella and if we don’t get these children the help they need, what will happen? Where will they go? Where will they work? How will they become contributing members of society? I have spent the last year of my life fighting and fighting and fighting just for Ethan’s diagnosis. Without the official diagnosis, Ethan wasn’t eligible for the intensive therapy that he needs in order to progress and have a chance at attending mainstream school in the future. No, it didn’t take the doctor a year to realize that he is autistic. It took the doctor a year to see us and to get us the diagnostic evaluations necessary to be able to tell us what we had already known for a long time. But finally, after that long and painful year, we finally have the diagnosis. And now a whole new fight begins. Now we fight our insurance and we fight our military providers and we fight more waitlists to get him enrolled in these programs. Some days I feel like I have no fight left in me. Today was one of those days. But the Lord knew that I was tired and that I needed an angel to wrap their arms around me and tell me everything was going to be okay. So He sent my friend Kristen.

A few hours after I had left her house, I delivered Kristen her lunch that I had promised. Never mind the fact that it was now dinner time. I pulled up to her house and walked past her *YARD OF THE MONTH* sign that she seems to win every single month (did I mention she just had her fifth baby?). Yes, Kristen is a rock star. I walked up to her door and let myself in because our other friend was over and there’s no way that anyone would hear me knocking over 9 children. I handed Kristen her overdue lunch and she handed me dinner and dessert that she made for my family. I don’t know how she does it. I don’t know where she finds it in her to not only take care of herself and her five children and her deployed husband, but so many of those around her as well. But what I do know is that the Lord is mindful of each and every one of our needs and He used Kristen to do His work today... To comfort and strengthen and nourish me. One of my favorite quotes by President Thomas S. Monson reads “We are the Lord’s hands here upon the earth, with the mandate to serve and to lift His children.” Today that was Kristen. Tomorrow, that will be me. Because as much as I feel like I am drowning in my own issues on days like today, I have witnessed firsthand how healing (and necessary) it is to shift your focus from your own problems to someone else who needs their burden lifted... 

I am so grateful that my friend Kristen reminded me of that today.

Autism: Our Answer

One week ago, after a year of searching, we finally got our answer. After twelve months of doctor appointments, specialty appointments, screenings, therapy sessions, developmental testing, genetic testing, parent interviews, questionnaires, clinical observations, wait lists, and more wait lists… Ethan’s developmental pediatrician was sitting across from me with our answer. Finally an answer. This is what I had spent the last year of my life waiting for and fighting for and praying for. Doctor Cooper looked me in my eyes and finally said out loud what I have known in my heart for a long time.

“Ethan is autistic.”

This news came two days before Christmas and I know most people won’t ever understand, but it was the best gift we could have received. Not the best news, but the best gift. We have our answer. The emotional roller coaster of fighting and advocating to get this official diagnosis is over. We can now get our sweet boy the help that he needs.

I wasn’t sure when or how to share this news, but I knew I had to… For many reasons. Our support system has been by our side from the very beginning of this journey. We have been loved, supported, cheered on, and prayed for throughout all of the ups and downs that the past year has brought. We have promised to keep you all updated and it is a promise I intend to keep. There have been so many days that I would get home from a doctor appointment or a therapy session and all I wanted to do was crawl into bed with my little guy and shut the world out. But I knew my family and friends were waiting for answers just as we were, so I sent out those update texts and made those difficult phone calls. You got your updates and I got something so much more. I got unconditional love on the other end of the phone. No matter how many miles separated us, I felt the love and support from more people than I can count. I was forced to talk through my emotions instead of shutting them out. I am ever grateful for the support system that I have been blessed with.

Ethan is incredibly lucky to have so many people in his corner. He deserves it. I love my son more than anything in the world and I know with a surety that the Lord has made Ethan exactly as he should be. I truly believe that we are given unique and specific trials to go through in life to learn from; so that we can be strengthened and refined. Every single one of us has limitations and challenges. Some are physical, some are emotional, some are mental, some are spiritual. Ethan’s challenges are different than most, but I know that he will do amazing things. He has already taught me so much about unconditional love and acceptance, about patience and grace, about personal strength and perspective. Would I take away some of the hard things that he’ll have to experience in life if I could? Sure. I think any mother would do that for any one of her children. But if by some kind of miracle, I could snap my fingers and somehow “fix” this… I wouldn't. I would NOT change my son. He is the sweetest, purest, most loving little human that I have ever known and he has a big impact to make on this world. Ethan has taught me so much in the past two and a half years without ever saying a word... And I am not done learning from him.

 …”thou knowest the greatness of God; and he shall consecrate thine afflictions for thy gain.” 2 Nephi 2:2

Mondays are hard...

Today is Monday. Mondays are always hard on me. Ethan has therapy at 8:00am where an early intervention team comes to our home and works with him. Once they leave, I get him ready for the day and then loaded up into the van for speech therapy. Before heading out, I pull out photos of the building, his speech therapist, his favorite toy there, and the waiting room. This is part of our new picture exchange communication system that is supposed to help with his transitions. By 11:00, we’re off to speech therapy. At the end of these multiple morning sessions, his therapists will update me on his progress and then ask me a myriad of questions pertaining to his “homework” for that week- whether it be specific speech or behavioral goals, learning new signs, or following new commands. Sometimes I have good news for them, sometimes I don’t. This week, I was happy to report that he has started to actually understand me when I tell him to “sit down" without any gestural prompts. I’m always excited to share good news with them, but I just can’t seem to quiet that voice in the back of my mind saying “are you REALLY celebrating this right now? Your two and a half year old learned a simple command that he should have known over a year ago. That’s not a cause for celebration…” And that’s when the mom guilt gets me. That’s when I start to question why he is the way he is, what I have or haven’t done to help him enough, what I could be doing to help him more, why we’ve gone through months of therapy and he still isn’t speaking. Mom guilt… It haunts us all, but experiencing what I have with Ethan has taken it to a level that I didn’t even know existed. And Mondays are the worst. We spend our mornings in therapy and I have the rest of the day to think about all those questions from the professionals and all of the progress we haven’t made yet. Once we’re home, I put the kids down for a nap, and I’m alone with my thoughts. I think about his IFSP and his upcoming IEP and all of the other documents and goals and progress records and new commands and signs that I have been tasked to teach him in the upcoming week. When he learns and retains something new, I get that “Christmas morning” feeling that I used to get as a child. Sheer excitement and joy. When he doesn’t meet a goal, I feel like a failure.

This is where prayer comes in…

 I have spent countless hours awake in my bed worrying, contemplating, crying, questioning, analyzing, and (worst of all) googling. But none of that helps Ethan speak. None of that makes him less frustrated. None of that eases my anxieties or comforts me. In these moments… Prayer is the answer. The Lord is here to comfort me and guide me and lift this burden. I have faith that this obstacle we are going through is only temporary. I know that we have all been given challenges to mold us and to sculpt us into the people that our Father in Heaven wants us to become. I don’t know WHY Ethan has a speech and language disorder, when and if he’ll ever be able to effectively communicate, or why we have been given this specific challenge, but I do know a few things... I know that it could be a LOT worse. I know that I have a healthy son and I thank God for that every day. I know that the Lord never gives us more than we can handle. And I know that this trial will strengthen and unite our family. I know I have a lot to learn as a mother. Being Ethan’s mother has truly humbled me. I was that mom who would constantly brag about my ‘genius-of-a-daughter’ who was walking and talking at nine months old. How foolish of me to think that was something that I could actually take credit for! I now have a 2.5 year old who doesn’t even say “mama” and although there’s that little voice in the back of my mind that tries to tell me it’s my fault, I know that’s not the case. Scripture tells us that “all things which are good cometh of God; and that which is evil cometh of the devil…” [Moroni 7:12] Mom-guilt is not of God. He does not want me blaming myself or questioning my abilities. I am Ethan’s mother for a reason, and I couldn’t be more thankful for that. He is the most sweet, gentle, loving child I have ever been around. Whether someone has known him for 2 minutes or 2 years, EVERYONE comments on his sweet nature. He is my gentle giant and I know I have just as much to learn from him as he has to learn from me. 

Mondays are hard… 

But life is hard and I will have to get through many more Mondays. 

I will get through them with God on my side. I will not let the adversary win. I will continue to pray when things get hard and praise God every chance I get. The Book of Psalms tells us that children are a blessing from the Lord and I believe that with my whole heart. I have been blessed with three of them- all with their unique strengths and weaknesses. I know I have been fully equipped to raise them up in my loving care, despite any obstacles that we may face along the way. I will continue to pray, not only for myself, but for my children <3

Introducing...

Jarom Mitchell Bledsoe

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 NOT: JEROME, JARON, JARED, OR JAROMY

 

Our sweet little Jarom arrived in the early morning hours of September 5 after a short, easy labor (another post will be coming with his birth story). It has been two and a half weeks since his arrival and life in the Bledsoe home has been filled with happiness and lots of love! Trinity and Ethan absolutely adore their baby brother and have since the moment they laid eyes on him. When we brought him home, the kids ran to the front door and greeted him with big smiles and loads of curiosity. I was pretty certain that Trinity would take to him well, because she did such an amazing job when Ethan was born and she understood much more of what was going on this time around. I kept her in the loop during the pregnancy and brought her to all of my doctor appointments. Throughout the pregnancy, she would talk to Jarom using my bellybutton as [what she thought was] some sort of amplifier. She would constantly ask “how much longer until Jarom pops out of your bellybutton?” and she would tell me about all the things she wanted to do with him when he arrived. So I was confident that she was ready for him and would have no problem adjusting to being the oldest of three. Ethan, on the other hand, I wasn’t sure about. I’m never quite sure how Ethan is going to react to any type of change. He generally doesn’t do very well. I tried rubbing his hand over my belly during the last few months and repeating “baby” but he didn’t really seem to understand. So I held my breath, prayed, and waited. Jarom was extremely comfortable in there and decided to hold out until 41 weeks to make his arrival, but once he finally got here… Ethan FELL IN LOVE. I have to admit that I was not expecting him to react the way he did. From day one, he has been enthralled. The first day home from the hospital, all he wanted to do was hold and kiss Jarom. He must have kissed him 300 times that first day. It melted our hearts. So far, the hardest part about having three children is keeping the other two off of the baby 24/7! But if that’s the biggest challenge… I consider myself blessed.

 



Daddy walking into the house for the first time with Jarom

 

Jarom is an amazing baby. After I had Trinity and people would ask how we were adjusting, I would say “they just don’t get any easier than Trinity!” But… Jarom proved me wrong. I literally have never seen a more content newborn in my life. Sometimes we don’t even know he’s woken up because he just doesn’t cry! One minute he’ll be sleeping peacefully and the next minute we look over and he’s wide awake, just looking around. He is an exceptional nurser and an awesome sleeper. I can honestly say that since we’ve been home from the hospital, we haven’t had one sleepless night. He sleeps anywhere from 4-9 hour stretches, wakes to nurse, and goes right back to sleep. I can’t explain how much of a relief this is after having a baby who nursed every other hour for the first 10 months of life! My little Ethan was not a sleeper. As much as I love him, he was a VERY hard baby. I thank the Lord that I didn’t get two hard babies in a row because I really don’t know how I would have handled that. But thankfully, He knows what I can handle and never gives me more than that.

 

 

So life is good over here! We’re getting into the swing of things and enjoying every minute of being a family of five. My mom was here for about ten days; five days before Jarom’s arrival and five days after. I can’t even explain what a huge help she was. She kept our house immaculate, kept our bellies nice and full with her mom-cookin’ and loved on her grandbabies all day long. It was very hard to say goodbye to her, but luckily I married a man who takes amazing care of me and keeps me going. He is the most helpful, loving man I know and I am so thankful that he is here to share this experience with this time around. Ethan was about as old as Jarom is now when we had to send him back to Afghanistan to finish out his deployment. We have said many, many goodbyes while in the Army, but that was definitely one of the hardest. I am thankful for the stability that we are experiencing at this point of our lives, I am so thankful for this precious addition to our family, and I am thankful for the incredible support system that we have- both near and far. We are blessed beyond measure!

Guess Who's Back...

It has been a couple years, but I have decided to come back into the blogging world and re-connect with my amazing readers. This blog used to be an outlet and a tool for me to educate other women on natural birth and parenting, and I loved every minute of it… But life got busy, the kids started growing up on me, and I decided it was time to focus my energy on keeping up with them. Over the past two years, I have had countless people ask me to come back and write, and many more that have come up with the brilliant suggestion that “you should REALLY get into mom-blogging! I would totally read what you have to say.” That one makes me laugh every time and is always a huge compliment. So here I am… Back in the blogosphere. A lot has changed for our family in the past two years, and I am thrilled to share all of the exciting new things that we have going on. It makes me sad to think about the amazing milestones that I have missed out on writing about, but that is a big reason why I’ve decided to come back. While I’ll still have a large component of natural birth and parenting, I’d like to shift my focus toward documenting our family life so that we have something to look back on throughout the years. Life is moving so fast and I don’t ever want to forget the sweet things my children are doing and saying. This time is so precious and I can’t let these sweet moment slip away. So feel free to “like” my blog on Facebook, share the page with your friends, and send in topic requests! Those were always some of my very favorite posts. I am excited to share this journey with all of you again and I look forward to hearing your input as always <3

Photo by Molly Gillispie of Molly Gillispie Photography