Things I wish I knew as a special needs mom
I was told in the beginning all these things when we got the diagnosis. “Things will get easier” “you’re so strong, you’ll be able to handle it” “once she gets the help she needs things will be ok” “ things will only be a little different”. I’m sure they thought they were helping me in their own way but, they really weren’t. I needed to hear the truth about how hard things were going to be and how lonely of a life it can sometimes be.
🩹 I’m 4 years in and things have NOT gotten easier. They definitely have gotten harder! Along with new triggers that pop up out of nowhere.
🩹 I can’t just randomly decided to take both her and her 2 yr old brother to fun places by myself. She’s unpredictable, prone to taking off, and if she has a meltdown I need both hands to carry her. One to hold her and the other to stop her from hurting herself. So everything has to be planed in advance (with help).
🩹Play dates/birthday parties are hard because, I’m constantly worried about her. Is she playing nice? Are the other kids being nice to her? Is something going to set her off? How bad will the meltdown be! Will the parents think I’m a bad mom? I know we’re not supposed to care but, sometimes it’s hard not to. We’re only human.
🩹 People expect you to live up to impossible standards. You’re not allowed to have a bad day or moment when you have a special needs child. You’re no longer seen as a regular human being anymore. You don’t get to have a breaking point. Which is crazy because, these people will never understand what it’s like to get 3 hrs of sleep, work through several meltdowns that last for an hr +, where there child is hurting themselves and you and you have to figure out why it’s happening because they’re not going to tell you. And you can’t even get a minute to regulate your emotions because they won’t let you leave them. (Every. Single. Day)
🩹Making friends is HARD! All I want is for my child to have a friend/friends who accept her and see her the way I do. Instead she gets called weird and left out of group activities. Which breaks my heart as a parent. Especially because, I have a very social child who craves connection with kids their age.
Having lived through the highs and lows of raising a special needs child, I understand deeply the emotional and practical challenges involved. One thing I wish I had grasped earlier was how unpredictable each day could become. Meltdowns might strike without warning, and managing them requires all your focus and patience. Planning outings and social events with a special needs child involves intricate preparation and often an extra set of hands—it's not as spontaneous as it might seem to outsiders. Another important aspect is the emotional weight. The constant vigilance at playdates or birthday parties, fearing your child might be misunderstood or excluded, is draining. You might worry about other parents' judgments or feel isolated because they don't truly understand your struggles. It’s essential to build a supportive community of parents and caregivers who share similar experiences – this network can be a source of strength and comfort. Sleep deprivation is a harsh reality in many special needs families. It’s exhausting to function on limited rest while addressing a child’s urgent needs and regulating their emotions. This constant stress can take a toll on your own mental health, making self-care vital but often difficult to find time for. Despite these hardships, it’s important to celebrate the small victories—a smile, a successful playdate, or a moment of calm. Each one is a testament to your strength and resilience. Remember, it’s okay to have bad days and ask for help; being a special needs mom doesn’t mean you have to do it all alone. Incorporating understanding, patience, and honest communication with your support circle can help ease the challenges. Tools like sensory-friendly environments, tailored educational plans, and behavior support strategies can make a big difference. Connecting with local and online special needs communities also provides valuable resources and emotional support. Above all, never lose sight of the joy and unique perspective your child brings into the world. Although the journey is tough and sometimes lonely, it’s also filled with moments of profound love, pride, and growth that reshape your understanding of strength and hope.
