My Pregnancy and Delivery Story

My main purpose of starting my Blog was two fold. One, too help educate my family and friends about Autism and our story with Wyatt. Two, is to help me talk about our story and workshop my grief, feelings, both positive and negative, and to give me an outlet. I have had a few difficult blogs and this will be another one. However, I feel it is so important to tell my story and to help me move past my grief.

I was so busy with raising two infants, one with medical issues, that I didn’t realize how deeply effected I was at the birth of my twins. I had just gotten a call that my sister had delivered my niece Delilah and I ran to Hoag Hospital to finally meet my sweet niece. The room was filled with family and I walked over to Lindsay and Delilah and the second I saw her, I could feel panic and felt myself become flush and started having a hard time breathing. I felt weak and felt like I was going to faint and immediately started sobbing. Everybody was happy and celebrating and I could barely keep it together. I realized then that I had experienced a traumatic event and never healed properly.

After years of trying to get pregnant, Cullen and I started IVF. As we were going thru the process, we also found out that my stepfather, Bob was diagnosed with Pancreatic cancer.  Pancreatic cancer is aggressive and brutal and I wouldn’t recommend it on my worst enemy. Within 6 months, Bob had been admitted to Hoag 18 different times and had lost over 100 lbs. This was incredibly difficult managing my stress and staying healthy for the babies. Bob told me that he was holding on so he could meet the boys because he was sick of being surrounded by so many women. 🙂 After 5 months it was clear he was suffering tremendously and couldn’t fight anymore. Bob passed away in March and my mourning period was placed on hold, in order to keep my babies healthy.

On May 13th around 4:00 am, my water broke. Granted I thought I peed myself so I went back to sleep only to be awoken again with another gush of fluid. I called the doctor and when I said I was almost at 33 weeks with twins, she told me to rush to Hoag Labor and Delivery and to not take my time. We were there within 15 minutes and I assumed they were going to send me home since I was so early in my pregnancy and naive since it was my first pregnancy. Since I was only 33 weeks, we didn’t have a bag packed or anything.

The doctor came in and said they were going to take some blood and check me out but that I would deliver soon since my water broke. She sent my husband home and told him to pack a bag and get whatever we needed to welcome our two babies home. They took my blood and ran some tests and I anxiously waited for the results. Within a few minutes, the door to my room opened and I saw a doctor come rushing in with nurses in tow, pushing a gurney. The doctor explained that my blood pressure was over 200 and they needed to rush me to the OR for an emergency C-Section as they were afraid I was going to have a stroke. Within 5 minutes, I was lying on the gurney looking at the 18 different doctors and specialist all standing by to help our babies. I started to panic and told the anesthesiologist that I was going to need a Xanax and he said I would be fine and he would walk me thru it. The door to the operating room opened and I saw my husbands panicked face. He rushed to my side while I tried to explain what was happening.

The doctor opened my stomach and was working on getting Baby A or Wyatt out and I could feel my pressure drop dramatically and became nauseous. They pulled Wyatt out and all I wanted to hear was crying. After a what felt like hours, he started crying. The doctor started working on Baby B or Tucker and I noticed my husband was looking over at Wyatt and his face turned white. I heard him ask if he was going to be ok? He wasn’t getting any response and later told me that Wyatt had stopped breathing and they had to resuscitate him numerous times. All I saw of Wyatt was him being held in the hands of someone running out of the OR. Tucker was next and they had to assist him with breathing as well and they also took him out of the OR and into the NICU immediately. My husband looked at me in a panic and I told him that I would be fine and to go with the babies. All of the sudden the room went from 18 to 4 and it was horrendous not knowing what was happening with my babies and not being able to see their faces.

My mom came in the recovery room and all I remember is that I couldn’t stop shaking and I desperately needed to know how Wyatt and Tucker were doing. A women came in with two pictures and said, “here are your babies.” Both had Oxygen masks on and tubes everywhere. It was not the delivery I had expected. Why couldn’t I see and hold my babies? Cullen came in with his parents and they he still looked pale and scared to death but all of them put on a happy smile and tried to reassure me.

My blood pressure was not stable and I wasn’t able to see my babies for over 48 hours. It was torture. The doctors had me on Dilated (painkiller similar to Heroin) and I think that was the only way I made it thru the 48 hours. 3 days after the delivery, I was able to visit them for the first time but still couldn’t hold them. They were both 3 lbs and had tubes everywhere. 5 days later, on my birthday, I was able to hold Wyatt and Tucker for the first time. Tucker was improving but Wyatt was still unstable. I made the nurses bring both boys to me and I placed them next to each other on my chest and sat still for hours. I swear to anyone that asks that this was the point that Wyatt started to improve; after he was reunited with me and his brother. I did this daily and after 4 weeks Tucker was allowed to come home. Wyatt had sleep apnea and a soft pallet and was transferred to CHOC. After 8 weeks he was discharged from the hospital with a heart and oxygen monitor and a feeding tube.

After a year of procedure and or surgeries with Wyatt, he was a healthy, happy little boy and we were overjoyed with his progress. Tucker kept growing and both boys are know in the 98th percentile after being in the 0 percentile for height and weight for months.

I am sitting here typing at my desk and I feel like after writing this blog, a weight has been lifted off my shoulders. I feel grateful that I have two beautiful boys as so many families aren’t as lucky. My birth and delivery story wasn’t the story I had envisioned, but I wouldn’t change the story at all, as I have grown tremendously as a person. I had no idea how strong I was until this experience and I am proud of my family for taking it one step at a time. Most of all, I am proud of Wyatt for overcoming so many obstacles and reminding me to take one challenge at a time and hard work pays off.

xo,

H

 

 

Sleeping Issues and Autism

It seems our sleeping issue have regressed and we all are exhausted. This is our current sleeping situation:

Wyatt is 5 1/2 years old and we are currently using 5 mg Melatonin ER and Lavender Oil in a diffuser and also rubbing it own the bottom of his feet before bed. This was working for a few months, however he is back to not being able to fall asleep until 11-12 pm and waking up in the middle of the night as well as the first one up. This is not enough sleep for him and causing an increase in bad behaviors during the day and at school. This is not enough sleep for his parents as well and bad behaviors have been know to occur. 😉

Recently he has become anxious when going to bed and wants the bed completely covered with blankets as well as many lights on as he can negotiate with his parents. Cullen put up Christmas Lights around his bed to help but he still insists at least one light on or he becomes very anxious. To make matters worse, if there are any holes showing where the blankets overlap, then he can’t sleep and we have to fix the holes. This can happen 4-5 times a night.

We made an appointment with a natural doctor to help get him on some supplements in order to avoid putting a 5 year old on prescription sleeping pills. She was a breathe of fresh air and recommended the following supplements:

  1. Liquid Calcium Magnesium (helps calm mind and body)
  2. Cortisol Manager (helps stop mind racing)
  3. Inositol Powder  (helps anxiety and OCD behaviors)

Initially, Wyatt had some stomach issues as a result from the Magnesium and we have since stopped the Magnesium and are working on some of Wyatt’s gut issues that are often associated with Autism. However, we are happy to report that after 5 days on the new Supplements, Wyatt is asleep by 9-930 pm and isn’t waking up in the middle of the night. 🙂

If you are looking for a natural doctor, I would recommend Newport Integrative Health located in Costa Mesa.

Dr. Koren Barrett (949) 743-5770 and http://www.newportintegrativehealth.com

Thanks,

H

 

Youth Sports and Autism

I have really struggled with this post. I have so many thoughts and emotions on this topic, and not sure how to organize it, so please bear with me.

I wanted my twin 5-year-old boys to try a youth sport this year, so I signed them up for soccer. I volunteered to coach because I wanted my son Wyatt, who has Autism, to be taught by someone who understands Autism and how they need to be coached. Plus, I used to play soccer so I thought it would be an awesome experience for all.

We had our first soccer practice and I was so pleased to see a few other boys who were in Wyatt’s class at school and who also had Autism. I was excited that I would have the opportunity to spend time with these awesome kids and to try and give them a positive experience. Most of the kids spend hours in therapy and school, so getting them on a team, having fun, was my goal.

After the first game was over, it was clear that our boys with Autism, found it difficult to play in this kind of environment. All three of them were on the field, super excited, and really wanting to play the game but anxiety of getting hit with the ball, screaming parents, and coaches encouraging voices seemed very overwhelming. Yet, they continued to play and had a blast. They didn’t care about people staring at them, or other boys making rude comments, or parent’s being more concerned with winning, but I did.

I heard, “what is wrong with that boy?” and “why is he making such loud noises?” I heard “why are you talking like a baby?” and “look, he can’t even talk.” I will be honest, the last one was about Wyatt and took a lot of strength not to break down and cry on the field; just held on until we were home. It was about my son Wyatt, who sometimes when he is over stimulated and overwhelmed he has a hard time finding his words. It broke me. Kids were making fun of my son when I was standing right there. I kept asking myself, “where did these children learn to be so mean?”

I then heard rumblings about it not being fair that we were losing so many games and some other unfortunate comments by parents, who were more concerned about winning then FIVE year old’s learning soccer and having fun. It then became very clear that these kids learned from their parent’s.

I started to observe the parents and I was watching grown men yell at their kids to, Pay attention! Stop messing around!!! I heard a coach yell, “We are the #1 team, so let’s act like it!” Let’s remind ourselves that these children are FIVE. I saw a parent cause his son to cry because he was yelling at him.

These parents were putting pressure on their children to win at age FIVE. No wonder we live in a world of competition and judgement. I saw parents who were more interested in their child winning, then appreciating children with special needs and giving them the ability to be part of a team. I see parents who tell their kids not to text while driving, as them mom is texting while driving. I see parents tell their kids to not drink and drive, yet they drive home after a few drinks after dinner. I see parents hosting a tailgate at a high school football game and then act surprised when 79 children get kicked out of school for drinking at that football game.

Listen, I am not perfect. Not even close. But, I teach my kids empathy and compassion. I teach them that everyone is different and unique and being different is cool. I teach my kids that winning isn’t everything, and if you lose a soccer game, it means there is more to work on and we must work hard to succeed. I also teach my kids, that children can be mean and if someone is mean to you, then you don’t need them to be a friend.

Do I just need to lower my expectations? Do I just need to come to grips with reality that my son will not play well in a team environment? Maybe. I do wish that people would be more tolerant with people with Special needs and appreciate their differences. Most importantly I wish that parents would take these type of opportunities to help educate their children on kids with Special needs.

 

 

Explaining Autism

Explaining Autism can be difficult because every person with Autism is different. I found a fantastic video and wanted to share with my family, friends and teachers. Share this with your family members, teachers, and anyone who spends time with your loved one with Autism.

xx,

H

Sensory Seekers vs. Sensory Avoiders

Autism is a broad spectrum which makes each person with Autism unique. However the majority are either Sensory Seekers or Sensory Avoiders. Here is a great list which details the difference between the two and behaviors associated with them. My son is a Sensory Seeker and every single one of these he does or has done.

Sensory seeking

  1. Spinning
  2. Climbing too high
  3. Climbing everything
  4. Crashing into things (people, furniture, walls)
  5. Mouthing/licking inedible things (furniture, toys, body)
  6. Chewing inedible things (clothing)
  7. Eating excessively
  8. Constantly wrestling with siblings
  9. Touching everything
  10. Playing with food
  11. Eating messily
  12. Overstuffing their mouth
  13. Eating spicy/hot foods
  14. Under-responding to pain (‘shakes it off’ quickly)
  15. Dumping out toy bins just to look at everything
  16. Engaging in excessive sensory play (mud, water, soap, etc.)
  17. Jumping
  18. Pushing
  19. Running barefoot
  20. Chewing on their toothbrush
  21. Not sitting still at their desk
  22. Falling out of their chair for no apparent reason
  23. Seeking loud noises (turns up TV, battery toys against ears, vacuum.)
  24. Failing to monitor their own volume (you constantly say, “Stop yelling!”)
  25. Smelling everything, even bad smell

Sensory Avoiders

  1. Picky eater (prefers one texture or basic flavors)
  2. Covers ears at noise (hates vacuum, blender, hand dryers)
  3. Avoids touch (not a ‘huggy’ or ‘cuddly’ kid)
  4. Hates tags/seams in clothing
  5. Won’t wear shoes (or prefers only one shoe type)
  6. Avoids messy activities (mud, sand)
  7. Avoids art activities like painting or playdoh
  8. Walks on toes
  9. Doesn’t engage in playground activities (climbing, swinging, etc)
  10. Hates a wet/dirty diaper/underwear
  11. Dislikes having people too close
  12. Refuses to take a bath/shower or play in the sprinkler
  13. Hates water on their face
  14. Hates/Refuse to brush their teeth
  15. Complains about smells
  16. Complain that normal light is too bright (wanting to wear sunglasses)
  17. Over-responsive to pain (everything hurts!)
  18. Avoids/refuses stickers/fake tattoos

 

xo,

H

Lack of Empathy and Compassion

We have entered a world where people can post whatever the want on message boards, Facebook posts, and blogs without any accountability or consequence. We have entered a world where people judge other people and don’t have any empathy for the people they judge. When my son was diagnosed with Autism, we entered a world where my husband and I have been accused of being lazy parents, parents who don’t enforce rules, and whose child is out of control due to our lack of parenting.

We have entered a world when a little boy with Autism is having a meltdown due to sensory overload in a parking lot and somebody videotapes it and posts in on Facebook. We have entered a world where instead of showing empathy and compassion for the parent or child there are comments about the child being retarded, should be beaten, the parents shouldn’t procreate, the child shouldn’t be let out of the house, the child is spoiled, the child will be the guy who kills kids in a school shooting, or my favorite, the parents are lazy and have no parenting skills.

We have entered a world where there have been numerous times I have come home in tears because my son was having a meltdown and people judged me as a bad parent because they were uneducated as to what Autism is. It took me a few years to not give a shit and realize that my number one focus was my son and if they weren’t educated about Autism then that was on them. What is scary is that with all the Autism Awareness and education, there are still people who lack understanding, empathy, and compassion.

Please see the attached photos, which are actual comments that were posted below the video of a child with Autism having a meltdown. In the post it states that the child has Autism, yet the comments show no empathy and compassion. They blame the parents even though they have never meet them or understand their struggles.

Now imagine that your child has Autism and you are reading these posts.

We live in a world were children are cruel and bullies are abundant and we wonder why? We live in a world with hate and school shootings and we wonder why? We live in a world where children commit suicide and we wonder why? We live in a world where people who love people of the same gender are killed solely based on their sexual preferences and we wonder why? We live in a world where people will riot and hurt others based on their political preference and we wonder why?

Everybody has issues and nobody is perfect. Why do we all try so hard to present this perfect image? Aren’t we creating more problems and issues trying to keep our problems and issues quiet?

I ask that as you wake up each morning and try and live a life not judging others and teach your children as well. I want to live in a world were we teach our children they don’t have to be perfect; not the best at sports or school but they always try their hardest. I want to be part of a world that teaches empathy and compassion. I want to live in a world where if a parent is struggling, we step up and help. I want to live in a world where we support and encourage each other. Help each other thru struggles and challenges. I want to live in a world where before you are able to post a comment on a message board, Facebook post, or blog, you ask yourself if you would say the same thing to your mother, father, sister, brother, daughter, or son.

Just my random thoughts for the day.

xx H