I suppose many ask themselves; ” what do you say to a special needs mother?’ As a mom of a special needs child, I was then asked how I do it. I never really knew what to say in return. Do you want to know the truth? It was hard, really hard.
Some days were easier than others I guess, but overall it was just really tough. But you know what? I got through it day by day and I made the most of our time together and in the end, that’s all that mattered. In this article, I will help you gain insight into what it is like being a special needs mother.
To make it easier for you to understand some of the daily battles we face and better prepare you on what to say when you encounter a special needs parent.
Being a special needs mom
Oh man, it was brutal, it made me call upon all my strength and draw on the parts of myself I feared most. I had nights when I cried so hard when my son wouldn’t settle and I had to sit up with him all night changing his music or just soothing him. I was then expected to smile at my husband in the morning and not growl because apparently, that would be wrong.
Then I had to be a “mommy bear” and not an actual bear to my other two kiddies because you know eating your young is frowned upon as a human. I had to remind myself as I functioned with little to no sleep that I can’t have wine for breakfast and that chocolate is not a salad.
Being a special needs mom, I needed to be a warrior – and I don’t mean in the sense that I had to go around looking for battles to pick with a sword and ninja skills (wait that would have been epic!). But, I mean, that I needed to be strong enough to weather any storm as a caregiver. I was challenged in ways I never thought possible and there will be days when I felt like I just couldn’t but did because my son needed me.
Jaden’s smile is what always kept me going. I would do that all again and I don’t even care about the toll it took on my body as well as my mind because he was worth everything.
What responsibilities are needed by parents of a special needs child?
I needed to be there for Jaden, physically and emotionally, which wasn’t always easy. I couldn’t cope most times and would just want to cry (or scream and maybe throw some stuff). Jaden was so sensitive to my emotions though and when I struggled he struggled, which compounded the situation. So, I needed to learn to control the darkness, for my son because of my son.
I needed to be his advocate and his voice. So many times I had to go head to head with the nurses and doctors because they didn’t understand him. I have a lot of respect for the medical professionals but sometimes their bedside manner sucks. I needed to fight for what my boy needed and deserved because often cerebral palsy and other common types of special needs are not properly understood.
Jaden needed his music to calm him and he also had to have me near him to just soothe him when he had too many people hovering. This translated into having Jaden screaming, getting so agitated he either had a seizure or bled profusely, it wasn’t pretty.
I also needed to be strong. Many times I have gotten so frustrated at having to do so much and is expected ‘to be strong’. Ironically, I had ‘to be strong’ to control the blazing anger at having to endure family and friends wanting me to be present as well as do things for them when I couldn’t even keep my eyes open.
I had ‘to be strong’, enough to handle the challenges that come with having a child with cerebral palsy and strong enough to love Jaden unconditionally.
What are some things you should never say to a special needs mom?
- “I don’t know how you do it”
- “You’re so strong”
- “I could never do what you do”
These are all well-meaning statements. I get that it was said with good intentions, but they inadvertently made me (make a special needs mom) feel like I had to be strong ALL the time. I’m not and I should be allowed to be weak sometimes and I should have been allowed to need help. When I was told things like this I felt like I couldn’t ask for help and that I can’t feel weak or show weakness as I will be judged.
Yes, it may sound illogical to some but that is the truth of the matter and it is how we feel. To diminish one’s feelings under strife are to invalidate them as human beings and that is what a special needs parent is, fallible and flawed.
Yes, we are rock stars because we KNOW not many people can do what we do but we are allowed to feel overwhelmed or depressed. Most times, people you say “are so strong” are the ones that are always there for others but have you ever thought: who is there for them?
Also, other important things not to do
Saying nothing, but staring
This will never be okay and I find it weird in this day and age that people still do this like it is acceptable behavior. My boy was never a circus performer and I absolutely hated that he was constantly stared at like he was. I would rather have you come up to me and have asked me about Jaden than have you stand staring at him.
Using the R-word
Do not under any circumstances use the word ‘retard’ or any derogatory terms to a special needs parent about their child. I can’t speak for other parents but I have literally been stopped twice (by my husband) from punching women who have asked me at the mall, “Is your son retarded?”.
You are so lucky your spouse stayed with you
Do I even need to explain this? I have been told this so many times over the years by complete strangers at random places like it was totally normal thing to say. As you can tell, one of the challenges of special needs moms is anger management because of all these ridiculous, hurtful things people say.
No, I am not lucky because it IS what you do as a parent or spouse, you step up and not step out. So, yes my husband is a good man and I am lucky to have him but not in the context this comment was meant.
Park in a disabled parking zone or use a wheelchair-accessible toilet when you’re NOT DISABLED
Do you know how inconvenient it is not to be able to have both of these accessible? In this context, a mom with a wheelchair-bound cerebral palsy child aka me. Do you know how many times I have waited outside a wheelchair-accessible cubicle (because most places have only one) for a non-disabled person to have a conversation on their cell phone? Too many times to even count.
Personally, I feel that the laws for handicapped parking spaces need to be strongly enforced, and punished when not adhered to.
What do you say to a special needs mother?
- “I am here for you”
- “You’re not alone in this”
- “I can’t imagine how hard this must be for you”
- “What do you need?”
- “Can I help?”
These show that you understand what she’s going through and that you’re there for her, that’s what she needs to hear most. Listen to us without judgment, and avail yourself if you care, we do not like to ask for help so when we do or when it is offered it means so much.
Respecting our parenting choices, those precious moments of having someone validate what you do or are doing is such a pivotal flash for anyone, especially a mom who is factually hanging by a thread. Advocate for us in public as we are not asking for sainthood, just a second of validation and support in any form to be included or thought of, not forgotten or overlooked.
Special needs mom depression
There are a number of reasons why depression is so common among special needs moms. First, we often feel isolated and alone and we may not always have a support system of family and friends to rely on. Or even in company, we feel alone or isolated because we feel disconnected from everyone who doesn’t understand this journey.
Second, we are constantly balancing the needs of our child with the needs of our other children, which can be exhausting (speaking from firsthand experience). And third, we often face difficult financial circumstances due to the extra costs associated with having a special needs child.
If you are a special needs mom suffering from depression, know that you are not alone and there are many other women out there who understand what you’re going through. You don’t have to suffer in silence.
What are some things special needs moms want you to know?
There are a few things special needs moms want you to know. First, that they appreciate your support and understanding. Second that they are doing the best they can, even on the days when it feels like they’re not. And third, that their child/children are just as worthy of love and happiness as any other child.
So to all the special needs moms out there
- Being a special needs mom is tough, trust me I know, but you’re doing an amazing job.
- You should be so proud of yourself for everything you’re doing.
- Keep up the good work! You’re doing great and your child/children definitely think so too!
Final thoughts
I know that sometimes it feels like the whole world is against you. I felt like I couldn’t do anything right, and society seemed to be constantly telling me that my child is a burden. Every day, I woke up and put on my armor, and fought a battle that most people couldn’t even imagine enduring.
So, remember special needs moms out there, the next time someone gives you a dirty look or says something nasty about your kid, just remember that those people don’t know better. They probably needed to read an article like this one so just walk away with your head held high, knowing that you are one of the bravest people on this earth. Since bravery isn’t always bells and whistles of the dramatic sort, sometimes it is just going out into this unfiltered world.
We must band together, support each other and share our stories, we can make a real difference in this world for our children, and for all mothers who are fighting for their kids.
So please share this article with your friends, and let’s start changing the way society sees and treats special needs mothers (or dads) everywhere. Together, we can do anything.
Charlie
Charlene is a published author/writer who has embarked on a personal journey, with the hope of providing guidance, support and advice to all who may need it.