Parenting a special needs child

Parenting an adult child with special needs isn’t always easy and it’s not as easy as I might make it look from online social media posts or photos that capture a good moment in time.

In fact, I have a lot of days where I’m tired, mentally drained, fatigued from the lack of sleep for myself and frustrated with life…. Period. As my son has developed into a young adult, his moods, behaviors, triggers, anxieties, sleep patterns, toileting, bathing, mobility and comprehension have all changed and it’s a continual adjustment.

We have plenty of days that are good and run as smoothly as they can get, considering the life we’ve been dealt. By the way, if you want to know more about the journey of his youthful years you can search the archived articles and learn more.

This article today will mostly be about my frustrations and venting because I’m in a place of life where I wish things were very different from how they are. Recently, we took a road trip in the state but out of town. And it went okay up until the last night, where things became so frustrating with him having a complete meltdown that we decided to check out of our hotel early and return home. I’ve come to the realization that nothing ever runs smoothly or stress free because his needs and wants do not align with that of my own. I love my son and I do everything for him and I try to get small moments in for myself which are merely impossible. However, I do wish I either had a live-in caregiver for him or one that is able to do overnights with him so that my husband and I can truly have some alone time without time restraints and travel restrictions. If I can be honest this isn’t how I envisioned my life would play out when I began a family. Sadly, all of my children have developed some level of mental health conditions through no fault of their own, yet it doesn’t make me feel any better about how our family dynamics run.

It’s funny because whenever I’m sharing with someone in depth the very things I’ve had to experience and not by choice, but by force of Gods will and nature alone. They All, always seem to say the same thing to me, “you’re such a strong and patient person” and I just laugh and thank them, explaining back that I am indeed just the opposite. I’m not a patient person, and I do not see myself as a strong person at all, but one that is weak who has been given strength from the Lord Jesus to keep going.

I have been through a lot during my 47 years of life, from being abandoned and adopted. Raised in a dysfunctional home environment, emotionally abused, confused about who I am because of so many other things and social aspects around me. Becoming a teen mom, raising four children, and enduring hardships throughout their growth and development. Persevering through the mental toll it took upon me and my thoughts and feelings about life, God, love, people, hope, prayer, and doubt.

I have my good days and I have my bad days. I have truly had some hills to climb and valleys to walk through in what felt like complete darkness. I actually hate the pressure of feeling as though others always view me as this resilient human being that I do not see myself as. Just because I’ve been through a lot and I’m still standing and still able to smile here and there, doesn’t equate to a resilient person or a strong person. In fact, I believe it just means that I haven’t given up yet and I still have hope in Jesus to carry me through. That also doesn’t mean that I don’t struggle at times with doubt, anxiousness, fear, or hopelessness, thoughts of wanting to pack a bag and leave.

Unfortunately, it’s just me and my husband, doing it all on our own. We have no extended family members that are reliable or able to help give us some relief or support. I wish our parents were in much better health to be that support we needed but that’s not the case. We will probably never be able to take a couples getaway alone to ourselves. I know someone reading this will likely have their inexperienced advice of what we should try, do or something because it happens. But until you’ve worn my exact shoes then don’t tell me how to lace up. I love my family, I love my children, I love my God and I’m thankful for the life I have and the times we share but I don’t always like what’s occurred. There are many times that I feel like I’m on lockdown and shackled by chains of bondage to a life of continuous suffering and pain. And sadly this has become my norm. It’s like my white noise, like my numbing. I feel like I’m drowning with no one to extend a hand to help rescue me and that it’s solely up to me to learn how to hold my breath a little longer with each sinking underwater experience.

I don’t know what my future holds for myself or my children, but I do hope that however long the good Lord allows us to remain on this earth that each one of us is able to live it with better days ahead, less stress, better mental and physical health and better mobility and as much happiness as we can have to fill our days and overflowing with joy to overshadow the dark days of our past.

Thank you for being here to all my followers and readers! I know you’re used to reading a more uplifting and inspiring article but I just don’t have it in me today. Life has a way of shifting the atmosphere and this is where I’m at right now. Much appreciated yet searching for better days.