Do you remember that oldies song “It’s my Party”? The lyrics go, “It’s my party and I’ll cry if I want to. You would cry to if it happened to you.” I know it’s a weird connection but that’s the song I thought of as I began to write this blog last night. So many people say how I’m a great mom or how Abigail’s blessed to have me. Maybe I am. Maybe she is. There’s a ton of special needs parents and care givers that are amazing!! I’ve met only a small handful and their stories need to be heard by everyone. Special needs parents are some of the most amazing people I’ve found out. But like the song goes, if you had a special needs kid you’d be pretty amazing too.
Let’s face it. If you’re a parent you are amazing. The responsibility God has given you to raise your child or children is one of the biggest under takings you’ll ever have. You are raising the future in your home right now. It’s huge!! It’s scary!! And often it’s a rollercoaster of emotions. Parenting does not come with rule books and how-to guides. And as soon as you kind of think you have one kid figured out another child comes along who is completely different. Parenting is a privilege and a blessing, but one that should not be taken lightly. So every parent who loves their child unconditionally is amazing in my book!!
But as a special needs parent you just have a few extra responsibilities. You often have a list of doctors to call. Often you have to deal with insurance companies and other financial assistance companies and organizations. You grow to realize there are not a lot of helpful people out there to assist you, so you learn as you go and learn to be assertive and to be your child’s biggest advocate. You are your child’s voice in a medical field, which is often full of people who are just after the next dollar or who think your child isn’t as high a priority. If you had a special needs child you would learn all about the ends and outs of the medical field too.
A special needs parent often has to be more accommodating and a quick problem solver. A lot of special needs children have physical and social limitations that you have to work around. I know a lot of children with sensory issues who cannot handle loud places, even crowded restaurants. Parents bring noise canceling headphones to help them in those situations. For us, Abigail cannot sit up. For the longest time we carried our own chair for her to sit in when we went out. Now she is stable enough to sit in high chairs at restaurants. But often the hostess will not ask us what we need, so she will get a booster seat for the booth. Abigail cannot sit in a booster seat because she would slide right out. So then I have to go chase down someone to replace the seat with a high chair. It’s a mess. But if your were a special needs parent you would learn to accommodate in a world that is not often accommodating to people with special needs.
Often a special needs parent has to deal with medical issues with their child. Whether it is seizures, a g-tube, or a host of other symptoms, parents have to walk through these scary things with their child. Not to mention the surgeries that often come with these medical issues. We have been blessed not to experience any medical issues with Abigail, but I have talked to many a mother who has and it is always an awful part of their story. One mom even said they feel as if they are going through it with their child. As moms we are often more scared and hurt and worried about our children than they are. But if you were a special needs parent you would do all this too if you knew it was best for your child.
Often as a special needs parent you have to help your child in ways you don’t expect or teach them things that should come naturally. They are much more dependent on you. Special needs children need help doing even simple things like getting dressed and using the bathroom. I still have to feed Abigail all her meals and give her every sip of water or juice she drinks. We aren’t even considering potty training, and diapers may be forever in our future. We still carry Abigail everywhere she goes. I have to teach her how to play with new toys and how her hand can make a fist. But if you were a special needs parent you would do all this too.
Lastly, often our dreams and expectations of our children crumble before our eyes. No one plans to have a child born with autism or Downs or a genetic disorder. Often parents do not know anything is the matter with their child until they are months, if not years old. So by that time you have planned for them to be your older child’s best friend, or a star athletic or a well-known doctor. Every parent dreams about their child’s future. And often as a special needs parent these dreams are broken as diagnoses come along. But that doesn’t mean we don’t dream. It is just that our dreams and goals are very different. My dreams for Abigail has changed dramatically in the last few years. Now I want her to be able to walk, to have accepting friends and amazing teachers and doctors. Things I would just take for granted when I was pregnant with her. But if you were a special needs parent your would adapt your dreams and expectations too.
The fact is that I am not anything special. God didn’t gift me with any extra abilities to care for my daughter. I am not amazing in any way. In fact I mess up a lot. I am lazy and don’t do everything I should. I don’t want to deal with doctors so I don’t call all the time when I should. I want to do my thing sometimes and not spend every waking moment helping Abigail. I am selfish. But I am a mother of a special needs daughter, and I will do anything I can to help her achieve her very best. Yes, we have to do things a little differently, but this is my normal. Abigail is my normal because I have no other typical child to compare her to. I would be scared to be around typical toddlers because I don’t know what they do. Around here we just take one day at a time and enjoy the small victories. I am thankful for my daughter and for being allowed to be her mom. Abigail teaches me more than I ever thought she could. Her joy and determination are contagious!! I am thankful to be on this journey with her and if you were a parent of a special needs child you would be blessed in ways you couldn’t imagine too!!