Last night was rough. Peanut had a great day, snuggling with me, watching sing-a-long songs (I watched Baby Shark at least 15 times today I swear!) and took a long nap. But when it got time for dinner, disaster struck. Peanut’s eating habits have been the number one struggle we have had with her ASD diagnosis. Tonight we tried chicken, fish sticks, broccoli, and ham. She refused it all. We eventually gave in and gave her Eggo Cinnamon Toast waffles.
Children with ASD often have many issues when it comes to eating. Some are due to muscle issues and difficulty swallowing. For others, it is all sensory issues. For example, I found this list on Ambitious about Autism that discusses eating issues in children with ASD.
- Tantrums and meltdowns at mealtimes.
- Getting stressed over new foods – sometimes even if they’re being eaten by someone else or just sitting in the room.
- If they can be persuaded to taste a new food, gagging when they try to eat it.
- Being revolted by the smell of certain foods.
- Refusing to eat one or more food groups (often preferring carbohydrates such as pasta, noodles, rice, bread etc. – though this isn’t universal).
- Refusing to eat certain textures (e.g. crunchy or soft).
- Getting hung up on particular flavours – often salty or sweet, which makes healthy eating much harder.
- Needing either really strong or really bland food.
- Wanting foods to be a particular colour (often brown or beige).
This by no means a complete list: food and autism can be an endless complication. Not all these problems have the same cause; some are more associated with anxiety, others with sensory issues.
Peanut has the tendency of only preferring a certain food for a few weeks, then refusing it all together. We have focused and moved on from french fries, pancakes, peanut-butter sandwiches, and now broccoli and lunch meat. All of these items she wanted exclusively for almost every meal, now refuses to even try them. We are starting to run out of options for her to eat! Let alone nutritious foods. Right now her focus is Gerber oatmeal with applesauce for breakfast (basically the only breakfast she will eat since she was 7 months old), cinnamon toast waffles, Annie’s Chocolate Chip Bunny Grahams, grapes, applesauce, chips, and mango. Mostly dry foods with very little nutritional value.
What makes this whole situation even more stressful and frustrating is the fact that she is non-verbal. (She can say “Done! Mama. Dada and No!) So when she wants something, in particular, she doesn’t even have the ability to ask us for it. It’s literally us trying multiple things until something works. She gets angry, throws herself on the floor, and yells. I can’t imagine how frustrating it is for her. She understands exactly what she wants from us, but has no way of expressing herself. We go through this with cartoons she wants to watch, toys out of her reach, and of course, foods.
We try to help her as much as we can. Pictures sometimes work if I can guess what options she is wanting. Sometimes, she can point to what she wants. Eventually, we will use photos in all aspects of her life or use an Ipad to help her speak to us. That is, of course, she has the understanding to use these techniques. Not all children can. And they remain frustrated and voiceless.
Of all things, Peanut faces, this hurts me the most. Not hearing her say “I love you” not listening to her sing along with her favorite song (Probably Baby Shark!) or even yell at her siblings about something. But just the fact that she can’t voice what she wants or needs is the most devastating. She must feel so trapped sometimes. Or does she? Does she realize she can’t tell us? Truthfully, I hope she doesn’t. Then she won’t understand how voiceless she really is. I know that sounds mean, but stop and think about not being able to speak at all. Having no way to communicate anything to those around you. Imagine how frustrating and scary that would feel.
I watch videos of her little buddies online. Singing along to a small karaoke machine, saying 2-3 word sentences, replying when asked questions. I don’t know if she will get to that point. There is no way of knowing if her vocabulary will develop. Even if it does, it doesn’t mean she will not regress back to 1-2 words.
This is why leaving her has always been so difficult for us. We’ve all learned to read her cues. We understand what the tantrums mean and can usually work them out. We can see her becoming overwhelmed and come close to a melt down. We can usually brace ourselves and step in before she has a total meltdown. But friends and family don’t have that ability yet. So she gets even more overwhelmed and the tantrums get worse.
I am proud of who Peanut is. I will advocate and fight the world for her if needed. But, her having Down Syndrome and ASD is not always wonderful. It’s painful, it’s scary, and it’s often lonely. But it’s our reality. I’m sure as she grows more obstacles will come our way. Some she will overcome and reach the milestones she needs, others will bring her down and cause her to fall further behind. But we take the good with the bad. The bad just helps us appreciate the good even more.
This week I am honored to introduce you to Alexandra. She is a beautiful mama who reached out to me a few months ago. Her baby girl Valentina was born with Down Syndrome and unfortunately a lot of other health issues. Alexandra hasn’t been able to share her story completely yet, until now. I am so grateful that she trusted me to help bring Valentina’s story to you.
Not many understand what you feel. Everyone feels something different when they have to say good-bye to their baby. No parent should ever have to bury their child, but sometimes you just have to.
I was very much jealous of the new moms, having their baby’s around the time Valentina was born. It did not seem fair at all. They give birth, they have visitors at the hospital, they go home, they take tremendous amounts of pictures of their newborn. Social media made it worse; you begin to envy them. Then you have to learn how to turn away from it or look at it in a new perspective. I do not remember when I stopped being jealous of others, but it did happen without me even realizing it.
My first time being a mother, was being a mother to a sick child. I believed we both suffered, but I suffered more…because I had to witness what my daughter endured. A baby, a small baby, after one day of being old…has surgery. The next surgery happens forty-eight hours later, an emergency. surgery at that. I remember why that happened. Ugh. The third surgery follows a week after that. Only one week with no surgery, but of course there were obstacles. Your newborn has to be transported to the children’s intensive care from the NICU, because they find blood clots. A few days later…machine becomes faulty, causing your baby’s heart to stop and having to be revived. The scariest phone call at six in the morning ever. I forgot I was recovering from a caesarean. That week goes by, but the beauty of that week, was seeing my baby open her eyes again after so long. Understand she is incubated, and under heavy medication. Fourth EMERGENCY surgery, we were told the chances are very very very slim. I honestly believed that when the doctor left the operating room, she was going to come back with the worst possible news ever, but no! I got another day with my baby. Surgery five comes along to finish up surgery number four work. A few days after that reality sets in. I learned within a one week time span, my daughter being incubated, was her being on life support. If she were to be off it, her heart will slowly stop beating. She was living because of a machine, the machine was assisting her. She was strong through all that though. My daughter did fight very hard, but at the end I felt as if she were fighting for me and her father. Fighting for us to realize that she is meant to be with our God. Those five weeks we had her…her father and I kissed her, hugged her, held her, smelled her, washed her hair, combed her hair, read her books, played her music, told her stories, and always told her we love her. I hardly ever left her side and if I did, I felt guilty.
I had to find a new strength within myself that I never believed I had. In doing so, I felt the dedication and determination to still provide the best I could ever provide to my baby. Even though she was incubated, she had a G-tube in her stomach for her feeds. She was being supplied her nutrients and TPN, but there was an occasion or two she was able to have breastmilk. Those were one of many happy moments. I pumped everyday, up until the very last day I had with my sweet girl. In five weeks I was able to store 498 ounces of breastmilk, which I donated to Mother’s Milk Bank in MA. There were many times I wanted to give up, because i just knew she was not going to have my milk, but I could not find myself ultimately stopping. Pumping, was my hope that my baby will come home. I have endured the horrors of pumping. They promote the beauty of breastmilk, but not the hard work that comes along. Being a milking cow was not easy, but it was my hope.
Five weeks, thirty-seven days of happiness, sadness, and stress. Will I do it all over again? Yes, yes I would. I had my baby in my belly for thirty seven weeks. I saw my baby. I held my baby. I kissed my baby countless amount of times. I learned a lot in those five weeks. My daughter taught me her strength, and I had to be just as strong. I tried not to break down in front of the nurses or doctors, because I simply did not want to be bothered with a social workers. So much occurred in such a short amount of time, I honestly cannot believe I experienced it. I admired my husbands strength too. He was there day and night, and still working his full time job. I know he was exhausted, but he loved his little girl. I know he loved her more than me, he would not admit that of course. My husband and I married AFTER our daughter passed away. We felt we needed to be united as one, and be a strong family. We were told many times, many of those who are put in our situation, do not make it. My husband and I surround ourselves with love, and we made sure our sweet girl knew of it.
We both learned from the beginning we had to be strong and fight. We had to have faith. It is so hard to have faith when you cannot see it, but if you allow to fall back on God, faith will always be there. God never left our side; we may have here and there…but He never left our side. He guided us every single step of the way.
I mentioned my husband and I had learned from the beginning to be strong and fight, well that is because we learned while I was still pregnant at twenty-two weeks that our daughter had a heart condition (AV: atrioventricular canal) that required open heart surgery, we also learned that she had Down Syndrome, which is very common for these babies to have a heart defect. I honestly hated myself after. I only say this, because when I learned of the results, I became selfish. I prayed for the doctors medical report to be wrong, and that my baby was going to be healthy. I was scared while being pregnant. The society we live in is so scary, I did not want people to mistreat my girl. I automatically wanted to protect her. I thought me knowing of her having Down Syndrome was going to mentally prepare me, instead it taught me, even while being in denial, that I had to be strong. I had to enjoy my remaining weeks of pregnancy with my baby. I could not let the countless amount of appointments bring me down. It was almost taking a toll on me, that I took control and cancelled so many of them! Of course my OB had to explain the what if’s, but I knew she trusted my instincts.
Just know that we (family and friends who knew what was going on) prayed hard for our girl. Heart remained strong, her having Down Syndrome was not a problem, she was born with a completely different condition that is apparently also “common “ in Down Syndrome babies…imperforate anus…no anal opening. At first I thought it was funny; I tried to have a sense of humor during the difficult times. Her having this condition, caused the many surgeries. At first everything seemed okay, but something else was wrong.
My daughter became septic. When exactly? I do not know.
Her heart remained strong.
Down Syndrome what?
Imperforate anus what?
Hello sepsis…Good bye sepsis.
At the end of it all. There was a miracle. It was not what I wanted exactly, because I wish my baby was here on earth with me.
Her soul was too beautiful for this earth.
She belonged with God.
I felt her soul was no longer here on earth, when she took her last breath in her parents arms.
Yes, my husband and I decided that enough was enough.
My baby was tired, and she fought hard for me, her dad, and herself.
It was time that we all had some peace. It hurt for a very long time, and everything felt like a dream, and sometimes it still does.
What can I say? I am human, you think these things. You question our God, and then you feel guilty for questioning Him; well at least I did.
My God was by my side anyways. He knew what I was going to say or do.
He wrote both our stories.
My daughter’s story is beautifully written.
I will still cry here and there, like I said I am human.
I will always love her. I will always miss her.
I am currently pregnant with her little sister. I was scared at first, but I am also leaning to enjoy this pregnancy day by day.
That is another day for going into details about being pregnant after infancy loss.
Valentina Faith Mejia. My favorite girl.
I will always celebrate you.
I know your presence is around me always.
I love you.
When Jana was born she had two defects in her heart. One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation) The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.) Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.
Yesterday we had to do the ECHO and EKG once again…
First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!! Seriously, I can’t keep this child still for anything! Except…yesterday 🙂 We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital. This meant, Jana got taken out of bed, and put straight in her car seat. She stayed asleep till about 6:30…normally she is up around 8:00. So that right there messed her whole schedule up. We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!) We got checked in and they put the monitors on her chest and tummy. Then, asked us to keep her still for the duration of the test! For the most part she did stay still…even fell asleep for about 30 min!! It was probably the most I’ve snuggled with her in a long time! But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around! Luckily they were able to view her heart as well as main arteries in her neck and lower chest area. How she did it, I have no idea!!
It was now 10:00, and time for the EKG. This LUCKILY is a very quick procedure and she is allowed to at least sit up. They hooked her up to what seemed like a hundred wires and the test itself took about 2 min! Our girl was going strong. She hadn’t thrown a single fit and was still being her adorable self.
Finally it was time to see our Cardiologist. The last time Jana saw him, she was smitten 🙂 We’ve said he is her favorite doctor because he is the only one she has ever flirted with. Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦 But that just meant, mama and daddy could talk to him a little less interrupted.
So what did the test show? Well, her PDA has completely fixed itself. That means, that is no longer an issue and can now be left alone. Then came the pause….. Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart. Meaning, the right side is slightly larger than the left. If left untreated, this can cause serious health issues. So a surgical procedure will be done next summer to fix this issue. They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open. He feels waiting one year will help her vessels grow a little. Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size. Obviously that is an issue!
So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery. Which means, I have a full year to stress and freak about my daughter having heart surgery!! Ugh!! I am honestly trying to stay positive about it. Our situation could be much much worse! We are very grateful for our babies health but it does not make surgery any easier. It is scary, it is stressful, but it is needed! Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries. I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all. I just need His help a little more to deal with the extra worries.