Parent Perspectives: Watching Siblings Embrace Autism Together

PHOTO CREDIT: cottonbro studio

Episode 297

This edition of Parent Perspectives features returning guest, Michele Abraham-Montgomery, who specializes in Family Services, Autism Resources & Advocacy, Peer Family Coaching, Youth and Young Adult Programming, Peer Best Practices, Modeling Play Therapy Techniques and IEP Reviews and Preparations. Her and her Autistic son, Khylil, created Spectrum Success 911, a nonprofit organization connecting families with programming, community resources, and organizations of support. Chele shares her reflections on watching a new generation of siblings navigate Autism in ways that echo her own children’s early years.

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Déjà Vu

Chele refers to her current journey as the “embracing” part. She says that when your child first gets a diagnosis you tend to reject it, then you accept it, then you embrace it. She remembers when her son and daughter were growing up, her younger daughter was put in the older role, keeping an eye on her son. Now Chele has a 4-year-old Autistic grandson and a 1-year-old granddaughter–the first girl in the family in 26 years! Chele is experiencing déjà vu watching these grandchildren!

Chele says that she “parentified” her daughter growing up, putting her in a mother role with son, Khylil. Now Chele’s granddaughter is stepping into an authority role with her own older brother, trying to make sure that he is OK. It makes Chele’s heart smile.

Chele’s grandson will also elope. One day when he was running out at Chele’s Ausome Ambassadors program, her granddaughter ran after him and jumped on his back to protect him and keep him safe, just like her mother did with her own brother as kids. Her grandson embraces his little sister and Chele sees engagement between the two of them. They also have typical siblings moment where they fight with each other. It’s really funny to Chele.

The Sibling Bond

Chele says that sometimes adults will describe children’s behaviour as them doing something “because they have Autism,” but Chele says that the Autism isn’t really an element in the sibling bond. Khylil and his sister are still very close as adults. Even since I’ve met Chele and Khylil a few years back, it’s inspiring to see Khylil’s development into a talented young man with a job, doing creative things, and being so articulate, which is a far cry from the doom and gloom that Chele was given by professionals when he was little.

Chele says that Khylil’s sister always saw Khylil in his authentic form and has always encouraged him to be his authentic self. Chele loves Khylil’s positivity. As parents of Autistic or other unique children, we have to be comfortable with being uncomfortable, Chele explains. She admires Khylil’s authenticity and says that his sister is his biggest cheerleader, even when Chele worries about him. She loves the relationship her children have and the support that her daughter gives Khylil. I referred to Episode 2 of the AUTISTIC Viewpoints podcast where Khylil and Turrell Burgess both spoke about how they are so close with their younger sisters. Chele believes that this support from his sister certainly contributed to Khylil’s confidence.

Chele says that Khylil went from non speaking to nonstop speaking. He is very comfortable in who he is and keeps blinders on to block irrelevant things out of his awareness. She sometimes envies his confidence. Chele’s grandson will keep to himself, like Khylil, but her granddaughter will make him come out of that place at any cost. 

Siblings are encouraged to participate at Ausome Ambassadors and sometimes they’re guests. It’s interesting to watch including how they share and how that engagement goes, Chele says. Some siblings are older and some are younger. They often know what their siblings needs, depending on the age and other factors.

I added that they probably come out of their shell with their siblings around since their siblings understand them. Chele does see the dynamic shift when the siblings are around including an increased engagement. She seems them take turns with who the dominant sibling is and how the roles play out. I pointed out seeing Love on the Spectrum and how much the siblings treat them like part of the family and like everyone else, all while wanting to protect their vulnerabilities.

Nobody Knows the Future

Chele is excited watching and embracing this journey with her grandchildren. Khylil is even babysitting now, picking up his niece and nephew from daycare–something Chele never expected. He’s a great uncle. I wondered if Chele’s grandson picks up on Khylil being like him. Chele brought up how her grandson connected with another non speaking child at Ausome Ambassadors who typically doesn’t connect with other kids. She wonders if her grandson sensed that they were alike.

Chele always says that Autistic children have a sixth sense about who cares about them and wants to engage with them. She adds that Khylil is also a homeowner and hasn’t asked her for any financial support. He pays his bills every month, the property taxes, etc. because it falls in line with routine, which he always does well with, Chele says. I pointed out that Khylil was more towards the severe support needs as a young child and yet as an adult has a full-time job, is a home owner, drives a car, babysits his niece and nephew. If anyone is listening and worries that their child won’t be like Khylil, it may not, but there’s always a way to connect.

Nobody knows the future and every child is different. It’s scary not knowing the future and not knowing if our children will be as autonomous as Khylil. Chele was told that Khylil would never walk or talk and that she should institutionalize him. She loves that Khylil’s journey allows them to be able to bring hope to families who have also had these type of remarks from doctors and professionals about their child’s differences or diagnoses.

With the right support system, the narrative can change, Chele insists. When she’s coaching parents she talks about presuming competence and provides the example of when an Autistic child feels your neck or chest when you’re talking. Chele says that they’re feeling the vibrations of your voice, and that it’s soothing to them. I brought up providing opportunities for non speakers to communicate using AAC and how many spellers we are seeing online who are communicating for the first time. 

The Struggles Are Real

Chele follows the child’s lead, uses affect and expression, finds out what lights the child up, and various Floortime techniques. But it’s hard to hear when a parent is in the throws of aggression and meltdowns when a non speaker is so sensitive and frustrated and we just want to protect them. I love having all of the different examples so families see that our futures are not written in stone, so we can keep the hope alive to support our children through their struggles. We can be inspired and learn from many other examples of lived experiences.

Chele says that in these more difficult situations, we want to find out who that support person is for the child. It may be a friend or a support worker at the school, she offers. Seek out who can connect with your child and watch how they are connecting with them. Try to mimic what they are doing to see if that can help, she says. Chele repeats that our kids have that sense of who is there on their team and there to support them. You are a team player. You are there for them.

Validation is so important, Chele says, even if your child is doing something that you think is negative. Be curious about why they are doing this. It’s hard to do sometimes. Chele says to focus on the senses to co-regulate:

• 5 things you can see
• 5 things you can hear
• 5 things you can smell
• 5 things you can touch

Use the senses to help your child to ground and self-regulate and provide sensory experiences at home–water play, slime, and exploring whatever they show interest in, as described in this episode with Occupational Therapist Robbie Levy. It’s so hard to help them distinguish what’s OK in the house versus what’s OK out there in the real world. You can drink water in the house, but not water at the splash pad or in the pool.

Chele says that practicing at home, you can do a “can” and “can’t” list. Another exercise she does is a game called, “Say it or swallow it” since a lot of kids in her group don’t have a filter. They might comment on someone’s yellow teeth. They might process out loud. It’s a great game to play to figure out how to monitor what they maybe shouldn’t say out loud in a social setting. 

The Unspoken Bond

Chele says that siblings have an unspoken bond as siblings that we don’t have as parents. Chele adds that even if they appear to be fighting and it seems negative, help them to express love so that in spite of the sibling rivalries, they can still learn to love and keep that bond with each other, even if they don’t always get along. 

Chele suggests teaching siblings to agree to disagree and still have respect for each other. You can say that you don’t like what your sibling did and wonder why they did it. You can understand why they did it, i.e, validating the behavious, and express that you didn’t like it. It will promote understanding with each other as they grow.

I added that Canadian Developmental Psychologist Dr. Gordon Neufeld will encourage parents to plant the seeds in siblings to think about if they also have hugs for their sibling along with the hits they have.

Thank you to Chele for gracing us with her insights! I hope that you found it valuable. Feel free to share this episode on social media!

Until next time, here’s to choosing play and experiencing joy every day!

Thank you to Toronto recording artist Ayria for the intro/outro song permission.