The Importance of Inclusion (and How Your Club Can Help Other Families)

By Sara Barr
Media & Publications Vice President

If you’re looking to be inspired by other moms of multiples, this is the article for you. I had the privilege of interviewing three moms who have children with a range of different needs. These moms’ responses are raw, heartfelt and full of great tips for us as fellow humans, as well as fellow club members. Meet these rockstar moms:

• Sarah Breault of Upstate Parents of Multiples (SC), whose 5-year-old son has autism.
• Alison Leeds of Polar Bear Mothers of Multiples (NJ), whose 14-year-old son was diagnosed with functional abdominal pain syndrome, irritable bowel syndrome-C and pediatric migraines. After multiple severe illnesses, in 2024 he was diagnosed with specific antibody deficiency, a type of primary immunodeficiency. Both twins had multiple severe food allergies after birth, which one boy outgrew, and the other’s allergies morphed into lactose and fructose malabsorption.
• Melissa (not her real name) wishes to remain anonymous and whose child was diagnosed a few days after birth with a rare genetic syndrome.

SB: What’s been the most difficult adjustment since your child was diagnosed?
Sarah: I honestly believe that it’s less difficult now that we have an official diagnosis. Ryan was diagnosed at age 4. Having definitive “proof” that what we always suspected was indeed happening was reassuring. As he ages, the biggest challenge is to explain to his twin sister, his little brother and to other children that his brain just works differently—he doesn’t need to be treated differently, but he might do or say things you don’t expect. He might need extra attention sometimes and be very blunt—none of which is bad. He’s just unique, like everyone else.
Alison: Having my son at home all the time! He cannot be around people who even have a sniffle because his immune system does not make antibodies to things like the common cold, ear infections, sinus infections, bronchitis, pneumonia and some other scary diseases. His body also cannot break down the polysaccharide coating around bacteria and viruses, so when he gets a cold or anything else it becomes very serious. He missed half of his 8th grade year because he was sick. This year in high school he made it two days, but is currently on homebound tutoring. All the medical appointments, lots of them, home infusions, nurses and everything else that goes along with a child who has a rare disease. I think the worst part for him is that he is not in school. He misses his friends, the social interaction and everything that goes along with being in high school. His twin misses his brother and partner in crime. It is hard because his brother is “healthy.”

SB: How difficult is the struggle to get the help or accommodations your child needs to succeed?
Sarah: Ryan doesn’t need school accommodations, which is a blessing and a curse. It’s a blessing in that we know he won’t struggle academically. It’s also a curse. Because he doesn’t need a formal plan, it’s been a challenge as he started kindergarten to draw attention to the things he does need. His preschool classes were smaller, so chatting with the teacher once was really all I needed to do. Now he’s in a class of 27 with two teachers. I have to remind Ryan to advocate for himself and also remind the main teacher that he has some needs (like needing to know in advance of any planned fire or safety drills that will be chaotic or loud, needing to be reminded to use the restroom, needing to be asked to participate in group activities rather than left on his own). 
Alison: My son has had a 504 plan since 2016 for accommodations within the classroom. Last year, since he missed 97 of the 180 days of school, it was suggested we petition the school district for an IEP. It has truly been a horrible experience for us. I feel like the school district doesn’t know how to deal with kids when their diagnosis is not cut and dry like autism or ADHD. We are currently under retainer with a disability lawyer who specializes in kids with rare and chronic diseases.
Melissa: School nursing coverage has been a challenge. There’ll be months when it’s so consistent we start to take it for granted—and it can be weeks of hoping and calling every day to advocate for a placement. 

SB: What support from friends, family or club members has been the most helpful?
Sarah: There are countless members of our club who had experience with BabyNet, with occupational and speech therapy and with autism, so they were very helpful in both pointing me to resources and also just empathizing with me when I needed to vent about the countless hoops of getting a diagnosis, health coverage, etc. Most people were really great about not offering advice unless they had the appropriate knowledge.
The members of our club have been great about accommodating Ryan at playdates, where he might not want to actually play with the other kids. They’ve been great about just meeting him where he is, but not making a big deal about it. He’s just another kiddo! We also have several members who work in related fields to the support I needed for Ryan, so they have been excellent at providing guidance.
Alison: We have our village here in our hometown, neighbors, friends and the school are all aware that he is sick. He has an awesome friend group that knows about him being sick. They try to plan small visits with him, and his friends isolate for two weeks before seeing him to make sure no one is sick and he is not exposed to germs. My mom friends also help us out in the same way, giving us support though meals, calls and other fun stuff. His twin brother is in the same friend group, and if anyone is sick someone always lets us know and they try to stay away from his brother at school also.
Melissa: Sharing stories (and clothes!) with other twin parents and a support group with other parents of medically complex kiddos has been paramount. There is so much kindness in the world. I still cry when I remember my dad waiting in the checkout to buy preemie diapers during the pandemic and they told him there was a limit to only one package per customer. He implored them, he was the only one to help get them for twins—but no exception was given. The customer behind him in line said “Oh, those are the kind I need too, I’ll take one” and she bought it for him and refused to let him reimburse her.
In the middle of chaos of premature childcare and learning to keep our baby with jaw differences breathing and fed, I remembered to contact our first twins club. They sent us a care package of preemie clothes and a gift certificate—it was amazing. We returned the clothes plus some, and knew this would help the next family. 

SB: What type of inclusion or support do you wish local clubs could provide to help their members?
Sarah: It would be great if clubs had directories of resources, like recommended service providers that go beyond just pediatricians or family practitioners. When parents go through the hoops and come out the other side, while exhausted, they should share what they can with their clubs (when comfortable) so that they can be a resource for others in the future.
Alison: I wish there was more support given to homebound MoMs or parents of multiples where one/both children have complex medical issues. It is hard being home all the time.
Melissa: A preemie care package, and hearing stories from other NICU parents. 

SB: Any advice for other parents who may face similar challenges with their kids?
Sarah: First, what you’re feeling in your gut is almost always correct. Second, medication is not necessary for all children, and if your service provider doesn’t believe that way, then please look for another opinion. Third, some children are too young to be officially diagnosed, so get a referral to occupational and speech therapy in the interim. If cost is a concern, apply for the Tax Equity and Fiscal Responsibility Act (TEFRA) program. It’s needs-based, not income-based, and it covers what your insurance may not.
Alison: Take it one day at a time, sometimes minutes at a time and always remember to take time for yourself. That was the hardest thing for me to learn, but you will burn out if you don’t.

Melissa: Join a virtual support group. Postpartum International is where we found our online support group. Use all local services like a regional center and in-home support services, and enroll kid(s) in infant/toddler programs within the school system. 

SB: What’s one thing you wish more people understood about your child or their condition?
Sarah: I really dislike when people say, “Oh, my son is on the spectrum” as though it defines their child. No one needs to give excuses for their children being who they are, so unless it’s necessary to share it, I don’t. Labels have a way of unintentionally separating kids from their peers, so I try my best to make sure that we don’t label him to his face or behind his back. Autism is a spectrum disorder, and it takes many, many different forms. It’s not a handicap or a disadvantage, and it’s not something to fear. 
Alison: My son is a typical teenager. Just because he has an immune system that does not work correctly doesn’t mean that he doesn’t have feelings. He craves social interaction, misses his friends and wants to be “normal” like other kids and his brother. He is one of the strongest people I know, everything he goes through on a daily basis makes him one of my heroes.
Melissa: Our kiddo has craniofacial differences (and a trach) that are immediately noticeable. Teach children and adults to treat folks who look different the same. Try not to stare. Find out what they are into. Follow their lead about whether or not to talk about their medical device or facial asymmetry. Focus more on what you have in common instead of what makes them different from you.

 SB: Anything else you’d like to share?

Sarah: Autism is hereditary. It’s not caused by vaccinations, or anything you did during pregnancy. It impacts boys more often than girls, and many adults have autism without having been diagnosed. I can see many of Ryan’s traits in my husband. We noticed some of his emotional symptoms/responses by 18 months. People chalked it up to him just being a toddler, but I know it was different, in part because his twin sister didn’t do the same things.
One of the biggest clues for us, beyond his emotional outbursts, was that by 18 months Ryan knew his letters, numbers, shapes and colors almost obsessively. He would line up his toys by color, shape and type. He got upset if something was a millimeter out of place, often when we couldn’t even tell. He loved routine and could navigate us places better than the GPS. This continued to get more obvious as he aged. While amazing, it was also a sign that his brain was different than those of his peers. Thankfully our pediatrician also agreed, and we were able to get him diagnosed at age 4.
Alison: I have been through the different stages of the shock, denial and everything else that goes with a rare diagnosis. It is very different when it is your child. Very different.