SPECIAL NEEDS PARENTS, BREATHE!

Sometimes, you need to say “Screw it” and take that break”

As special needs parents and caregivers, we are used to being strong and ever-present. The word “Break” doesn’t exist in our vocabulary, except when we see intense moments of distress and realize that we need to rest.

At the Exhale Conference 6.0, I had the honor of moderating a session on creating a sustainable future for children with special needs and I was reminded of one thing- Now is the time to start planning for the future. 

Not tomorrow, not next week, but now. 

But guess what? Your long-term planning for the children won’t be effective if you don't take care of yourself. The future is not just about setting up a trust fund but taking care of ourselves to ensure we can continue this journey with resilience and strength.

The Exhale Conference was organized by a powerhouse, Mrs. Bukola Ayinde, a disability advocate and a special needs mother to a child with cerebral palsy. It was the first time meeting Mrs. Ayinde and I could see one thing oozing through her “Power and resilience”

See also: Knowing my brother was Autistic.

We don’t talk about the strength of special needs parents enough. Most of the time, I talk about siblings, but let’s talk about the parents today. Special needs mothers have that thing about them. They give the aura that they can handle absolutely anything! They know what to do at the right time! 

See also: The Unseen Mental Health Challenges Faced by Caregivers of Individuals with Disabilities

Mrs. Ayinde's short film on special needs parenting showed the audience the process of how a special needs mother goes from unacceptance to pushing for inclusion for her child with special needs. Before the moment a parent accepts the diagnosis, there are moments of “Why me?” Why did this happen to me?”

But I want to come back to “Why not you?” 

I believe in God and his plans for success for his creation. I have stopped trying to ask the question "Why?" I can't figure out why things happen, but I know IT IS FOR OUR GOOD.

Before I go all Christian on you, let’s first talk about the things I learned about during this meeting.

1. First of all, your child can achieve BIG things. They can have educational and career paths. We often think that because our child has a disability, all hope is lost- No, it’s not. Your child can achieve great things so don’t limit them. So, this is to that mother worried about what impact her child will make- he/she can do AMAZING things. 

2. Please, seek a community to help you with your child. No man is an island, what I love about special needs parenting is that you're not alone. They carry your battles too. You have other people to help you. There is this unusual strength that comes from hearing other people’s stories. Conferences like Exhale are invaluable because they provide a sense of community.   

3. While all children may not have a job- yes, some children with special needs won’t have jobs,” it’s not just the society being inclusive, but what if the child is not able to hold up a job? That's where vocational jobs come in. Your child can excel in bead-making, and transcription jobs, and guess what? Technology has made things easier for us, as children with special needs can do jobs remotely. If your child or sibling has mobility issues, some remote recruitment sites can help.

See also: My Greatest Fear: My Future Role of Caregiving

4. Your child can go to university. One of the speakers, Tobiloba Ajayi who lives with cerebral Palsy, went to school and has a law degree! So, what does that say? Your child can go to the university. Now, universities are being inclusive. They may not all have ramps in all universities, but some specialized teachers are learning about individual differences. I, for one, love to see it!

5. One of the most significant concerns for parents of children with special needs is ensuring long-term financial security.  We’re worried about where the money will come from.

I know, I know- the economy is bad. But I want you to think of God as your source. He who gave you the child can provide for him/her.  That’s one of the things I love about God. He will never leave you. I want you to do something- write down the plans you have for your child. Where do you see him? How will she end up? Write those plans and work towards them.  

6. As parents, we look forward to our children being independent, but we have a role to play. Independence cannot happen overnight and involves children taking responsibility in many ways. We need to put them in situations where they would have to do things on their own. Teach them simple life skills- like how to buy things on their own, how to clean up themselves. Those little things make a huge difference. 

7. You need to take care of yourself as a special needs parent or caregiver. I’m talking about your physical health. When was the last time you took a blood test or checked your BP? It’s important to stay in the best state. Take a walk, do aerobics, take a dance class, and take your health seriously! 

See also: Normalizing conversations about disabilities and disorders

8. Not every neurotypical sibling will want to take responsibility for their sibling with special needs- the truth is that a neurotypical sibling has his/her own life to live and you cannot force them to take on guardianship. Besides, have we ever thought about asking special needs individuals what they want? This is personal because I never thought about asking about my brother's point of view. What do you want? Who do you want to live with? What I am trying to say is that you should factor their decisions in. 

9. A guardian can be a family friend who knows your child and knows how to provide for the child- not financially, but also emotionally. If I am choosing my guardian for my child, I want to make sure the person will ensure my child is respected and also follows the plans I have for him. They should be emotional and strong enough to guide my child. 

See also: This Autism documentary will change your lives.

The Exhale conference serves as a reminder of the importance of pause. As parents and caregivers, we are often in a constant state of “inhalation”—taking in new information, dealing with crises, and future needs. It can be exhausting. 

But exhaling—taking intentional breaks, enjoying life—allows us to process, reset, and return with fresh energy. This is not just an act of self-care; it’s a strategy for sustainable caregiving. I hope you take advantage of this information and truly rest.

And if no one told you today, you’re doing an amazing job as a parent and caregiver! I'm rooting for you!