When we first received Dominic’s diagnosis of Autism at age 2 1/2, my first thought was him as an adult sorting paperclips into boxes.

I thought he would never talk.

I knew nothing at all about autism. 

I did grow up with a neighbor named Tommy who had intellectual disabilities and he would visit our home frequently. This was the 1970s when those with disabilities were separated in school and many parents were told to institutionalize their children. Looking back, Tommy’s parents went against that way of thinking. They let him walk around the neighborhood unsupervised. I never asked Tommy if he had autism, we just accepted him the way he was.

Speaking of acceptance, it took me about two weeks to come to terms with Dominic’s diagnosis of autism. In my own opinion, I think that is very important to do because you really can’t move forward until you have done that. After the diagnosis of autism, Dominic subsequently received diagnoses of ADHD, Generalized Anxiety Disorder, and Complex Partial Epilepsy. In a lot of ways, when Dominic received that diagnosis of autism, I was actually relieved.  I found it much more stressful before we got the diagnosis. We knew something wasn’t right but didn’t know what it was.

Dominic turned 16 at the end of July and in a little over a year and a half and he will be an adult. Now that I have been on this autism “journey” with Dominic for almost 14 years, I can say with complete transparency that he has surpassed many of the expectations that I had for him!! Dominic’s speech is delayed and most likely always will be. When Dominic was able to say two or three-word sentences, I felt like jumping up and down!! This past Friday, Dominic’s sister,  Lauren asked him what he wanted for Christmas. He responded back with, “Legos and puzzles.” This was the very first time that he ever told us that!! Woohoo!!!! Given that he is almost 16 1/2 we have been waiting a long time to hear that!!!!

When you have a child/adult with learning differences and speech delays, when they are able to tell you spontaneously, unscripted, and unprompted what they want, you want to shout it from the rooftops! I belong to several Facebook groups that have to do with autism. Earlier this week, I saw a post about a 4-year old boy that saw one of his favorite Disney characters and spoke for the first time. Another parent saw that post and said, “thanks for giving me hope!’

Since I was so excited that Dominic had told us when he wanted for Christmas, I posted it on their Facebook page. Another mom wrote back to my post saying that she would give anything to hear what Dominic said to us and that her son is 16 as well. I wrote back to that mom and told her I was sending her a “virtual” hug and to never give up hope!!!!

This post originally appeared on bountifulplate.

I am a stepmom to one and a mom to two. I have been a stay-at-home mom for over 24 years. Grew up in Maryland and have lived in Michigan since 2001 when my husband got a job here. My 16-year old son has multiple disabilities.

Confession: I am not an expert on all things parenting—yet I am proud in my imperfections. My world forever changed in 2005 when, at the age of 18, I gave birth of my firstborn son. Fast-forward to now and I’m currently raising five incredible children, the eldest having autism and epilepsy. On this journey, I have learned that although my intentions were pure, my actions were at times flawed.  

Parenting does not come with a playbook. No matter how many books you read, videos you watch and advice you receive, there will still be an underlying edge of uncertainty. Add multiple children. Add a disability. Add the second guessing: am I doing this right? How can I do this better? Are my children okay?

Experience is a very thorough teacher if you sit back at listen. For 10 years, it was just my older three children. Then 2015, I was expecting again, but this time I was carrying twins. The feelings of betrayal, guilt and doubt overwhelmed me. Can I do this?

I already spent three days a week in a waiting room: speech therapy, occupational therapy, neurology appointment, the list goes one—but I was not alone in these appointments. That’s when it hit me. 

Every appointment, his siblings accompanied him. Many of the seizures he experienced, his siblings were by his side. The feelings of helplessness and hopelessness were not just mine to bear. This journey was not just mine and his. His siblings shared in the pressures—the only difference is that they were still children, too.

I spent a great deal of time trying to “protect” my children from their brother’s disability. I thought I was doing them a favor by “taking care” of everything myself. Little did I know that I created a barrier between them and their brother fueling feelings of favoritism, isolation and resentment. These feelings were unknown to me but weighed heavily on them and began to surface in different ways.

I needed to change the way I parented my children, but that could not begin until I addressed the failures of the past.  I was pregnant, hormonal, guilty and hurting. I was trying to reach my younger children but scared to admit I was wrong. 

How do I tell these innocent super siblings that mommy noticed their pain? How does a parent press restart on the parenting journey? These are the three steps I took to bridge the gap in our family.

Apologies are healing.

As parents we feel the constant pressure of perfection. We fear being viewed as fallible to our children and our families. That must stop. I sat my children down one evening after their older brother went to sleep.

I looked them in the eyes and with a heavy heart said, “I am sorry. I know I spend a lot of time with your brother, but I want to hear from you. How do you feel?”

They responded with eyes looking at the floor, “Fine. I am okay, mom, I know he needs you.”

Insert a dagger in my heart.

My children were still considering their brother and his disability—his feelings—before their own.

I asked them to look me in my eye and said, “You need me. I am sorry if you do not feel I know you need me too.”

Tears formed in the eyes of these precious young souls.

“I miss you, mommy.”

We all cried a great deal that night. No, it was not the answer to every problem, but it was the beginning to a new wave. I spent that evening giving them permission to feel.

Feelings are important.

By opening the door to communication, I gave my children the freedom to feel. They knew that that there was no wrong way to feel regarding their brother. Yes, the time spent would never be equal, but the love from mom was the same. I was on their team regardless of how hard it was. 

They told me how isolated they felt. The expressed the burden they carried in weight of being the younger sibling but knowing they were on a higher level cognitively than their older brother. This was huge.

Education is empowering.

I opened the conversation to questions. I did not know what to expect, but their questions came back-to-back:

“What is autism? What is epilepsy? Why does he flap his arms? Will he die having a seizure?” 

The items I thought I was protecting them from were the same items they were trying to internalize. They had a million questions and I sat and answered every one the best way I could, ending our talk with, “If mommy does not know the answer, mommy will find the answer.”

Children in special needs family experience things that their peers never encounter. They mature faster because of the things they go though. If parents fail to connect and educate the siblings on the disability, they feel lost and unprepared. 

“What do we do when there is a seizure?”

They watched me all these years, but I never communicated the process. I never took the time to address their concerns and prepare them for the possibilities. Fail. We do not know something until we know something. 

Now, when someone questions why their brother is flapping his arms, they are equipped to respond: “My brother is stimming. Do you know what stimming is? Let me teach you.”

Looking back, I realized all the ways I could have parented them better, but I did not have time to wallow in guiltiness. My oldest child was not the only one with special needs. The siblings had special needs of their own. They required active attention. They needed me to put them on the family calendar. 

All the time I spent ensuring their older brother was okay, I missed that the siblings were not okay. I falsely assumed I was protecting them. I made a change to communicate even when it was uncomfortable.

Parenting is not a one size fits all. All children are different and if we desire to raise secure and strong adults, we must start with ourselves. Acknowledge that while our intentions are good at times our follow though is faulty. 

There is power in an apology. I learn daily, yet I make it a priority to address the concerns the siblings face. I am a stronger and wiser parent now. My children know that they matter and that our certainty is that they know they are not on this lifelong journey alone.

Jeniece is a fearless special needs mother of five fabulous children: Christian, Caleb, Jada, Rose and Raymond—all of whom rock her world and shake up her soul! She is the founder of Special Needs Siblings, a non-profit organization committed to supporting the siblings of disabled individuals.

Before this pandemic took over, Dominic, who recently turned 16, was pretty “set” in his ways. Trying anything new and out of his “comfort zone” was not anything at all on his radar screen. As are many on the Autism Spectrum, changes in Dominic’s routine are not always easily accepted.

Since we are living in a different world now, I have used this time with Dominic to not only work on his social skills but to also try new things. When the opportunity to sign Dominic up for a “virtual” music camp in June arose, I really had no expectations that he would be engaged and participate. We had tried this particular camp in-person and it was too overwhelming for him and I never signed him up for it again. Much to my surprise, he LOVED it!! The camp had just the right mix of breaks and participation.

Based on that positive reaction, I signed him up for another camp similar to the one he did in June. The “Showcase” is this coming Wednesday night and Dominic will be singing, “Happy” by Pharrell Williams. Dominic has been in the choir at school for several years, but there has been more than one time he hasn’t sung, like not at all. I am hopeful when he does go back to school in-person, he will have gained the confidence to sing every time he is on stage!

Since just about every activity has moved on-line, when I saw on Facebook that the Food Network along with some other sponsors were offering free cooking classes, I signed Dominic up for three. He made Chicken Barbeque “Pizza,” with Rachael Ray; Chicken Parm with Angel Hair Pasta with Andrew Zimmern, and yesterday, he decorated a cake with Buddy Valastro

Typically, when we decorate a cake, I only let Dominic do the “sprinkles.” I have learned these past several months, to loosen the tight control I have on Dominic. That grip was real tight at the beginning of the pandemic because he had three seizures within the first month, caused by his Epilepsy (he has had 13 seizures in total, since being diagnosed in 2015). Since he has been seizure-free for over three months, little-by-little, I am making progress and loosening that tight control.

A huge lesson that I have learned having Dominic with me during this time of the pandemic is that he has to learn to adapt to this world, the world isn’t going to adapt for him.

Speaking of going outside Dominic’s “comfort zone,” I asked an artist friend of mine if he would be willing to give Dominic private art lessons. Those start this coming Wednesday. I will keep you updated!!!!

This post originally appeared on bountifulplate.

I am a stepmom to one and a mom to two. I have been a stay-at-home mom for almost 24 years. Grew up in Maryland and have lived in Michigan since 2001 when my husband got a job here. My 15-year old son has special needs.

The best piece of advice I’ve received from a friend was to be gracious. To try to find balance and grace in any way that you can. I aim to live by this phrase every day and tackle things one step at a time. But there’s no way we could have predicted how quickly life would change this year.

In 2019, I was blissfully working my job from home in Sports & Active Lifest‌yle Marketing for a globally distributed company halfway around the world. With the help of an amazing full-time nanny, I was caring for my two children, my thirteen-year-old son Noah, and my eight-year-old daughter, Amelia. My husband works as a contractor and we had fallen into a pretty good daily groove, and we adored our nanny, Christina.

Our incredibly brave and wonderful daughter, Amelia, has special needs. She was just three-weeks-old when she stopped breathing and suffered a massive seizure that led to acute ischemic stroke. We found out that she has a complex vein of Galen malformation, quadriplegic cerebral palsy, acute complex brain injury, and ischemic stroke and a high level of care is needed in case of seizures. No one knew Amelia’s expected life span, but we did know that she’d be lucky to make it past her first birthday. Now she’s eight. Amelia is non-verbal, on a Ketogenic diet fed through a G-tube to help treat her epilepsy, has to take medications at certain times, and relies heavily on a schedule. 

So we had our routine and then, just like that, 2020 reared its ugly head and everything changed for everyone. Not only is Amelia medically fragile, I have Hashimoto’s disease, which is an auto-immune disorder, putting me at a higher risk as well. For our family’s safety, we made the difficult choice to pause working with our nanny Christina. I knew that we were in for a challenge and managing everything was going to take a lot of juggling and balance. This is simply a new challenge that life has presented. Be gracious and find balance. You can do this. 

I’d like to claim that the balance was perfect from the start, but that would be a lie. The first day was a hot mess! I’m not ashamed to admit that. While I’m trying to work, my son struggled with Zoom, there were loads of laundry, Amelia’s feeding tube went everywhere, and on top of that, there was a diaper blowout in the middle of my workday. If you could envision the worst possible day, this was it. My amazing son is a tremendous help, and through a bit of teamwork, we managed to get everything done that day. Back when Amelia had her first stroke, I decided that we can’t just cry in the corner, we have to simply figure each day as it comes. That’s what we are doing now. Here are a few things that are getting me through and conserving my sanity:

Be as patient as you can be. Take deep breaths. Being patient can be really tough because none of us are in control. When I feel myself starting to lose patience, I remind myself to be grateful for all the blessings in my life, which include my kids, my husband, and my job. Yes, those things that can cause me the most stress are also what I am most thankful for. Keeping gratitude in your heart and mind will help get through these challenging moments.

Don’t be afraid to take a break. I’ve been reserving time that allows me to focus on myself and using that time to do something that makes me feel grounded. For me, it’s exercising, meditating, music, baking, or a mindfulness class online. I can’t stress enough how important it is to take care of yourself. It helps me stay motivated, focused, and ultimately maintain my goals personally and professionally. It’s okay to decline a call, push back, or take a day off if you need to. This is about survival and self-preservation is the new normal. It’s a learning process and it takes practice. 

Be honest with yourself and practice cautious optimism. We made the choice not to have our nanny come back to work, and that’s been tough and scary. But I’m used to scary—my daughter has been on a ventilator seven times. I also wasn’t planning on having to teach an eighth-grader who should be graduating. All I can do is go with it and release my expectations. I’m not going into this thinking that everything will run smoothly because it hasn’t thus far. I remain cautiously optimistic about the situation and I put faith in the amazing people around me—my husband, my son, my daughter, and my work team.

Spend time together as a family when you can. Quality time together is important now more than ever. And yes, I often need to force myself away from my computer even if everything isn’t entirely done for the day. We are baking, cooking, and working out together. We’re finding the fun in puzzles, movies, and board games. I cherish the moments when my attention isn’t split between five different things. My husband and I also stay connected as much as possible. So our relationship doesn’t feel stagnant, we are staying up later, getting up earlier, and talking more. My quality family time gives me life and energy.

Most importantly, remember that we can’t control what’s going on in the world around us. Give yourselves time to get into a schedule that works for you and your family. This is not a time to worry about keeping up with the Joneses at work or in life. My goal is to simply be in control of writing this chapter for myself, and that may mean working hard at my job, being there for my kids, but also expanding my mind and my abilities. Just slow down, take a few deep breaths and find the grace and balance that works for you.

Megan Malagoli Patterson
Tinybeans Voices Contributor

My husband Brent and I have two children - Noah and Amelia, also known as “Miracle Mia”. I can often be found reading a book, running, or sweating it out at my local OrangeTheory. I also enjoy traveling and have a deep passion for raising funds and volunteering.

As we continue through navigating our new “normal,” one thing, in particular, has stood out to me as far as parenting Dominic goes. No one can make it alone through this. I’m sure you have heard the saying, “it takes a village to raise a child.” Never has that been more true than doing these unusual times we are currently living in.

After I had my daughter Lauren, I had two miscarriages. When I got pregnant with Dominic, I was worried every single day that I would have another miscarriage. I think I knew deep down from the time he was born that something wasn’t quite right. When he was diagnosed with Autism at age 2 1/2, it surprised me, but not really. As the diagnoses started stacking up, ADHD, and Generalized Anxiety Disorder at age 3 and then Complex Partial Epilepsy five years ago, I knew that we needed additional support.

Say what you will about Facebook (I know not everyone likes it), but for those parenting children and adults with disabilities (such as our family) it’s very much a lifeline. Isolation was huge for our family in those early days of Dominic’s diagnosis of Autism. During that time, our daughter was having significant health issues and we were taking care of my husband’s parents back in Cleveland. It literally was all I could do to function each day. I guess you could say, “I was going through the motions.” 

When everything settled down a bit, I then started looking for my “village.” It’s not like you can go stand on your rooftop and say, “Hey! I need your support here!” I wish it was that easy, but it isn’t. When I started posting on Facebook years ago about important milestones Dominic reached, my on-line “village” would comment and/or like my post.

During quarantine, Dominic (and our family) have been the recipients of many “random acts of kindness.” At the beginning of the quarantine, a neighbor down the street gave Dominic a puzzle because he knows from my Facebook posts that Dominic loves puzzles. Five days ago, another neighbor (who just happens to be Dominic’s old music teacher) brought down five Magic Tree House books that her daughter picked out special to let him borrow because she saw on my Facebook page that Dominic was reading them. This past Monday, I met up with one of my closest and dearest friends in a high school parking lot (so we could social distance) and she gave me six puzzles, three of which Dominic has already done and yesterday afternoon, Dominic’s special friend, Madelyn brought over four puzzles. Wow, I’ll tell you, I am overwhelmed and humbled by the generosity of my “village!”

Thank you from the bottom of my heart, and please know this, it is very much appreciated!!!!!!!!!!!!!!!!!!!!!

This post originally appeared on bountifulplate.

I am a stepmom to one and a mom to two. I have been a stay-at-home mom for almost 24 years. Grew up in Maryland and have lived in Michigan since 2001 when my husband got a job here. My 15-year old son has special needs.

Editor’s note: Any medical advice presented here is expressly the views of the writer and Red Tricycle cannot verify any claims made. Please consult with your healthcare provider about what works best for you.

Epilepsy is a neurological condition where bursts of electrical activity in the brain cause abnormal behavior symptoms. These include muscle spasms, the sensation of pins and needles, fainting, and seizures. Epilepsy can be a complex and overwhelming diagnosis, especially in children, so here’s a short breakdown of what epilepsy means for young people, so it doesn’t need to be.

Related Conditions

Comorbid conditions, such as ulcers and headaches, may occur with your child’s epilepsy and should be monitored by your child’s health care provider. Evidence also suggests children with epilepsy have a higher risk of developing mood disorders, like anxiety and depression. Regular meetings with a counselor can help assist your child in minimizing these risks.

Triggers to Watch

Most seizures are random with no discernable pattern to help warn us when they’ll strike. So, it’s important to know what triggers to watch for. Triggers include a fever of 102 degrees or more, flashing lights, lack of sleep, hormonal changes, and stress or anxiety. If a seizure does occur it’s important to remain calm while you perform seizure first aid. If you’re unfamiliar with the proper steps, schedule an appointment with their care provider to have one on one instruction.

Treatment Options

When your child is diagnosed with epilepsy, doctors usually prescribe an antiepileptic drug. It’s common to try many different prescriptions before finding the right one. Other treatments such as the keto diet, vagus nerve stimulation or surgery may also work. Many parents choose to try alternative treatments, like using herbs and vitamins. It’s good to remember that each child is unique and what works for one may not work for the other.

Epilepsy in School

For most children, epilepsy does not inhibit them from attending school. Some children may have seizures in class and there’s a strong chance their teachers are not familiar with epilepsy. This is an opportunity to educate them. At the beginning of each school year, you can schedule an appointment with your child’s teacher and school nurse. This is the time to go over their needs and an emergency plan if any seizure does occur. Mention your child’s seizure triggers and warning symptoms so their teacher knows what to look for.

Sports and Activities

Epilepsy is unique for every child and so are their safety boundaries. When deciding what sports and activities are suitable for their needs it’s necessary to first consider a few factors. Seizure frequency, medication side effects, and level of adult supervision will help determine their ability to take part. Activities such as swimming, bicycling, horseback riding and climbing are not off limits, but they pose some risks. Always speak with your child’s health care provider before signing them up for sports.

Find Support

Managing a child’s epilepsy is tough, don’t try and do it alone. One of the most important things you can do for your child and you are building a support system. Establishing a routine with the whole family can keep everyone prepared and on the same page while lightening your load. Making sure your child gets their medication on time with good sleep each night is especially important with epilepsy. When things get overwhelming there are many support groups and other family services available to assist you. Remember, you can’t effectively care for anyone else without first caring for yourself.

My name's Vicky and I have a beautiful four-year-old son named Paul who just started preschool. When I'm not being a mother, I practice tennis and play with my corgi, Milo.

Meet they the dynamic, doctor-mom-duo—Dr. Diane Truong and Dr. JJ Levenstein, creators of MD Moms.  While they are board-certified pediatricians who not only created the first pediatrician-developed personal care line for our babies, they also give back to their community through their unwavering support of the Epilepsy Foundation.

Red Tricycle:  You’re part of a group of moms that are on a serious mission.  What’s yours?
DRs:  We trained together at the Children’s Hospital of LA, and witnessed firsthand just how many children were in need of products that effectively protected their delicate skin from harmful solar damage in southern California.  Our tiny patients, with crusty scalps, painful diaper rash, eczema and dry skin helped us develop several of our products.  It was so sad to see the children in pain, and we knew we could help!

RT:  Through your work, how did you decided to support the Epilepsy Foundation?
DRs:   During our time as pediatric doctors, we have cared for so many children and young adults who suffer from epilepsy – most of whom require 100% care.  We aligned with the Epilepsy Foundation of Greater Los Angeles in order to help their cause.  We help to fund more fellowships to train pediatric neurologists.  Epilepsy needs to be diagnosed early and treated with state of the art therapy to help improve lifelong prognosis – there are just not enough neurologists currently to meet that critical need!

RT:  What inspired you to pursue this passion for both the business and the foundation?
DRs:   We were moved by the need in the community for support.  Our commitment helps ill and disadvantage children through work in pro-bono clinics, as well as giving a portion of our proceeds to the foundation.  It’s thrilling to be able to provide our patients great products, but also be able to channel that directly towards the benefit of the community.

RT:  Did your kids play a role in helping you to come up with certain products?
DRs:  We both knew how frustrating it is to chase our kids around trying to apply sunscreen!  When our kids were growing up, they thought sunscreens were part of their daily routines–similar to brushing their teeth.  Once they figured out that not all their friends were subjected to the same rub down routine–they, of course, began to protest!    During those protests, the concept of self-applied sunscreens from towelettes was formed!  Moms win, and kids win too!  It makes applying sunscreen fun.

RT:  Chasing kids around to apply sunscreen is like watching a comedy of errors, right?
JJ:  My son was in the marching band, and all the kids after summer camp looked like raccoons since they weren’t apply sunscreen!  My son thought the self-applied wipes were super cool, so he handed them out.  Marching band saved!
DT:  Not anymore, thank goodness!  My son is a soccer player, and I always get a kick out of seeing his entire team line up to wait for a sunscreen towelette from me at the start of practice or game.

Be Like the Doctors!  Blue Shield of California’s Wellness Challenge:
Sunscreen and skin care is a lifelong lesson to staying healthy throughout our years.  But that’s not all the good doctors have to say.  As pediatricians, JJ and Diane give this advice:  Teach by example.  That means turning off the electronic devices when you’re together (bye bye for now, iPhone!) and spending time outside exploring the world around you.

Blue Shield of California is an independent member of the Blue Shield Association.