10 Unique Challenges of Being a Special Needs Parent
Some days, I truly feel like a super human, but what mom doesn’t? I think children are the best blessing on earth, but they’re also challenging and oh so exhausting. Raising a child is hard work. They can take every ounce of energy.
On the day we become moms, we cry happy tears. We cry joyous tears. We cry tears for an overwhelming love we have never experienced. We cry tears of pride. However, not all of our journeys start the same. The stork story was a huge lie; it’s never that easy. Some start their journeys through the expected pains of labor. Some of us start our journeys off with worry, as we hand our delicate children to a team of neonatal specialists. Some mothers meet their children through adoption or fostering, and I am thankful for those who choose to do so. Some give birth to children who have a limited time here on earth. Some women hope and pray each and every day to mother a child.
My own journey as a mom might be more complicated than some, and it is less complicated than others. It is a journey of motherhood, my absolute most favorite title in the world. If you are a special mom like me, you have also earned other titles beyond “Mom,” such as “advocate,” “medical professional” (although you have never spent a day in medical school) “therapist,” “teacher,” etc. You often gain a full understanding of OT, PT, TVI, SLP, IEP, O&M, and other previously-foreign abbreviations.
To be honest, I believe parenting a child with special needs can be harder. We are presented with tougher challenges. For example…
1. Our goals aren’t necessarily for our children to be honor roll students. Heck, we don’t care about grades or if our kids become star athletes. Some of our children have intellectual and physical disabilities or are medically fragile.
2. We are deeply concerned about their development. Will our children walk, talk, have friends, go to a public school and that dreadful question some of us face, how long will they physically be here on earth for us to hold?
3. We worry about their acceptance in the world. We want this. We advocate for this. Our children all deserve acceptance.
4. Our lives don’t start off with playdates, moms groups, baby music classes or mom-and-me yoga classes. These activities can be overwhelming for our children, and let’s be honest, we don’t always want them exposed to germs that could compromise their immune systems. “Did you wash your hands?” “Do you carry hand sanitizer?” Besides, we don’t always have time between the endless doctor appointments and therapies for playdates.
5. Some mothers juggle dividing love between a child with medical concerns and healthy children back home.
6. Most of our children have spent time in hospitals, significant time, countless hours with specialists. It’s a lot of hard work coordinating their medical needs and appointments.
7. Some of our children have medical conditions or syndromes that you have never even heard of, like my unique gem. We learn so much through special needs parenting. The pharmacists start to know us by our name.
8. It is hard to see children develop in what’s considered a “typical” way, no matter what we say. Our children work so hard, every single day, on things that come naturally to most, but do not come naturally to them. But our hearts fill with pride and we are forever grateful for every single inch forward.
9. We often feel alone. Those not in our situation simply don’t understand, although some truly do try. It’s hard to relate to people who aren’t in our situation.
10. We are tired, like just-had-a-newborn tired. A lot of special children have special sleep patterns.
Motherhood: it’s challenging and so rewarding. My number one priority is my daughter. My number one goal in life is to be a great mother. Savannah is happy. I don’t ever want to take this from her. I don’t take a day for granted. I feel thankful every day I wake up and see her smiling face. I feel thankful, every night I climb into bed and see her breathing.
It is true, I have my days, we all have our days. Some days, I feel that there is more on my plate than I can handle, but I am happiest when she is happy, and she is happy because of the positive love she receives daily. It’s the same love and support I have from my mom. It is the same love my sister gives her boys. It is the same love my grandmother gave my mother and my grandma gave my father. It is the journey of motherhood: different journeys, but the fiercest kind of love.
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