The job of a special needs parent is tough. It is also rewarding, tiring, and emotional. This job is not for the faint of heart, but it does come with some of the best joys a parent can experience. It also comes with a lot of challenges. Those challenges can get us down and prevent us from finding the joys if we let them. Successful special needs parents posess some important qualities. Here are some the most important ones…
Probably the most valuable skill special needs parents can have is patience. And, its not just because they need patience with their child. Special needs parents need patience with school, therapists, doctors, family members, friends and even the community. Everyone has opinions, and as you probably already know, people love to share their thoughts with you. This alone requires patience.
Just yesterday I picked up my daughter from school to find the aide pulling her to my car by her arm. Needless to say, I needed to take a big deep breath before re-educating her on how to properly handle my daughter. I mean its not like the aide doesn’t already know, but rather than blow my top during carpool line-up, I bit my tongue and waited for a better time to discuss it further.
This morning I had to really dig in and put on my fake smile as my older daughter informed me that she was too tired to get ready and just wasn’t going to do it. The best part of that story was that she was mad at me for waking her up, and so now I was the target of her angry outburst. I mean, it’s not like I was a fan of getting up early either.
So patience is important. The wonderful thing is that patience is not a feeling, so we can choose to be patient even when we can’t control what we are feeling in the moment. Believe me, I get angry a lot. I mean a lot, a lot. But, most people don’t know just how often I am seething under the collar, because I choose patience. Well, most of the time anyways. I am still human.
Special needs parents need to be creative in order to come up with out-of-the-box solutions to unusual problems. Take for instance my daughter who was just too tired to get up. On the way back home from taking her brothers to school, I stopped at Mc Donald’s, which happens to be her favorite place to eat. I ordered myself a breakfast along with her favorite thing on the menu.
Well, it was an absolute miracle, because suddenly she wasn’t tired anymore. I explained that I was getting Mc Donald’s this morning, and if she wanted hers, then she needed to show me that she wasn’t too tired to eat it. That meant getting her breakfast, taking care of her rabbit, and doing all of her schoolwork without any complaining.
I am happy to report that my daughter had her favorite Mc Donald’s meal for lunch today. She was also informed that the next time she didn’t get ready to go nicely, mom would get a Mc Donald’s breakfast, and she would sadly have to watch me eat it all the way home.
Thinking of new ways to solve old problems is really a special need parent’s super power. If you can harness your creativity, you will find solutions to just about anything that gets thrown your way.
If I had a dime for every time I had a hurtful thing said to me by one of my kids, I could retire right now. Every parent knows the sting that pierces the heart as their child says, “I hate you!” These hurtful comments seem to come much more frequently for special needs parents. It’s no fun to have to be the parent and ruin their fun plans, but I assure you it gets easier. I always tell my youngest that the guilt trip doesn’t work on me anymore. She has her six older siblings to thank for that!
What I have learned over the years is that “I hate you,” does not mean what it sounds like. It actually means I am angry that I am not getting my way. Kids actually want boundaries, and they want you to say “no” to them. They are just really bad at admitting it. A thick-skin is essential to keep your heart protected.
This is probably one of the toughest things that special needs parents will do. Finding balance between yourself and the special needs parent identity is difficult, but it is a must. I am that mom that will say how much I need a break, and then turn around and claim that there is no one I trust to watch my kids. Then I (or my husband, mostly my husband) will remind me that I am more than a special needs mom.
I am also a wife, a friend, a daughter, a business owner, and so much more. It is easy to allow my role as special needs mom to take over and become all that I am. This not only hurts me, but hurts those around me. My special needs kiddos need a break from me, as much as I need a break from them. Their siblings need me. My husband needs me. And, most importantly, I need me.
If I allow that one role to define me, I end up losing my identity. I need to create balance so that I don’t lose myself. In fact, I need to foster the things that make me who I am, and that means separating myself from one of my most important roles of special needs mom.
We know our kids better than anyone. Learning to see the hidden things is something that special needs parents learn to do with time. I saw a picture of an iceberg once. Not much was showing other than the very top, while the majority of the ice was being hidden under the water. Our kids are so much like this.
A few weeks ago, my youngest daughter was pulling on her arm and hitting her hand. Then every now and then she would yell at herself. I was concerned about this, as I knew that the school was trying to get her to learn PECS and using the hand-over-hand approach to teach her.
I contacted school and explained her behavior. My concern was that learning PECS had become overwhelming for her. Her teacher admitted to seeing this behavior at school, but had shrugged it off as past trauma from her time in the orphanage.
Being observant and watching for all the pieces can really help our kids navigate a world they may not be able to fully understand. My daughter is non-verbal, and so a lot of times she communicates with behaviors. Learning what these behaviors mean takes a lot of patience and being observant.
Being consistent can be a real challenge, but it is one of those things that our kiddos really need. My youngest daughter is non-verbal and quite low functioning. Because of this, she thrives on routine. It may seem boring to the rest of us, but to her “same” equals safe. If we adopt consistency as special needs parents, life really does get easier.
She knows that after she gets her clothes on for the day, her breakfast is coming. After dinner, she gets a play for a bit, and then it is bedtime. This consistency allows her to navigate her world with some element of control. She doesn’t have to worry about what time breakfast will be, because it is always after she gets dressed. Because she feels safe in her world, we see a lot less behaviors.
If there is a change in the schedule, we always let our kids know. However, our kids are also on the “need-to-know” program. This means that they only get the information they need at the moment they need it. For example, we told my older daughter that her social worker would be stopping by for an appointment on the morning of the appointment.
If we had told her about this change in her schedule a few days prior or even the night before, she would have been stuck on the detail unable to process anything else. By waiting until the morning of and providing a work around for her schedule interruption, we saw a lot less push back and negative behavior.
This can be so challenging in our society today, because it seems that everything is changing rapidly. However, if we keep our children’s lives as consistent as possible and apply the “need-to-know” principle, their world becomes much more secure and our world much calmer.
Muhammad Ali was considered one the greatest boxers of all time. However, it wasn’t because he was the fastest, biggest or even the heaviest puncher. It was because of his resilience.
As special needs parents, resilience is so important. If we are going to go eight rounds battling in the ring, we are going to have to be able to get back up time and time again. Yes, you will feel tired, broken, and unable to get back up, but you have to find the strength to move forward.
I love the saying, “You gotta fake it until you make it.” There are a lot of days that I just don’t want to. I have zero desire to get up, zero desire to be nice, and zero desire to do the mom thing. On these days I have to “fake it until I make it.”
This means putting on a smile, making a conscious effort to be nice, and get moving for the day. And you know what? Eventually if I “fake it” long enough, I actually start to feel better. My attitude rubs off on my day, and in turn begins to help shift my attitude for real.
You see on days when I send crabbiness into my world, my kids respond with even more crabbiness. Then suddenly we are spiraling into a tornado of crabbiness and the day is quickly ruined. If I fake my good attitude and put on a happy face, those are the days when things don’t go off the rails. And, if they do go off the rails, its typically easier to get thing back on track.
Special needs parenting is challenging, but if we employ some fairly simply strategies, it can be rewarding, joyful and even fun. Life becomes less stressful and more peaceful when we have control over the situations life throws our way. The sucessful special needs parents have learned some extra skills that help may life easier.