Special Needs Parenting

Insights into Special Needs Parenting: Okay, okay, you’re right. It is hard.

After writing this post, I was having second thoughts about posting because I didn’t want it to be taken the wrong way. I realized though that if I was going to write a blog about Teddy’s life, I needed to be honest and open about all aspects. So let’s get real…

When someone first finds out that I am a parent of a special needs child, they will typically say “You are an amazing Mom!,” “I can’t imagine how hard it must be,” or “I don’t know if I could do it.” Most of the time my response is “Thank you, but it isn’t that much different. Parenting is hard in general.  We just go to therapy and doctor appointments instead of practices and games.”  A lot of the time I actually believe that, when things are calm and stable. But if I am being truly honest with myself, I know deep down only part of my response is true; especially during the tough seasons when the weight of it all becomes so much you can barely breathe.  I do believe parenting is hard in general and we all are just trying to make it through one day to the next as our children’s lives outweigh our own, but special needs parents live in world where we are desperately trying to fit in and create normalcy, all while living in a parallel universe where our children’s lives are our own.  I personally would not change it for the world. I cannot imagine a life that wasn’t meant to be exactly this way, but as hard as I try to be strong and pretend it isn’t hard, the reality is that it is hard, very hard.  

In so many ways parenting a special needs child is a gift. We were so truly blessed to have been chosen to be Teddy’s parents.  He has taught us so much and made us better people. We love bigger, appreciate more, enjoy the little things, and have grown in more ways than we could have thought possible. But when I wrote in Teddy’s birth story that our souls became intrinsically intertwined in that moment, it was not a figure of speech, but more a reality. I am Teddy’s voice, his navigator, his independence, and his future. We are his path forward, because without us he could not navigate it on his own. We are constantly trying to find ways and tools to help him be in control (like NeuroCytonix), but he may never be able to navigate his future on his own. The weight of that knowledge can be crushing.

It also means that your personal future has forever changed. My career came crashing down around me. I was driven, I had clear goals, I was on a rising path, but after Teddy was born my focus changed. Teddy was more important than anything else in the world and for me, that meant everything around me had to change. I do not regret the decisions I made for a second, but if I am being honest, I struggle with the loss of where I thought I would be in life, every single day. I struggle going to work and realizing I am a fraction of the person I was and fairly useless now. I struggle with how to live this life outside of Teddy’s world and be successful living that life. I struggle with how to move forward, when this other world is dragging me sideways. I don’t know how to find the balance, because the only thing I can see is the beautiful little boy in front of me that needs every ounce of energy I have.

Parenting Teddy has always been fairly easy.  He is overall a happy kid, who has a very clear line drawn on what he likes and doesn’t like.  He has a strict routine and entertains himself. In all honesty, he is MUCH easier to parent than our 3yr old, who is a beautiful ray of sunshine but the very definition of a threenager.  But if I am being honest, parenting Teddy is so much harder now than it was, because the older he gets, the more narrow that line becomes and he can’t communicate with us on why we are stumbling today, when we were walking perfectly down the line yesterday. Parenting Teddy is different, because he isn’t just a 7yr old, doing typical 7yr old things. In many ways he is like an infant and in others he is like a toddler.  In some ways he is a typical 7yr old and in others he is an old soul. There is no book to use to help navigate milestones, developmental bursts, and behavior phases. There is no talking to other parents about how they coped or when their kids grew out of a tough stage. There is no roadmap on how to raise a child with special needs, because no one really knows, since every child is so different. Ultimately, it is an unsolvable puzzle! The best they can do is give you and them the tools they need to try and navigate the world around them, with the hope that it helps ease the load. 

If you talk to Teddy’s teachers, therapists, and doctors, they will tell you they have never had another kid like Teddy, at least that is what they tell me. While on paper he looks like he fits all the typical molds; defined medical diagnoses, classically autistic behaviors, and clear related delays, that should all respond to the clearly outlined treatments and therapies.  In real life though, Teddy is an enigma.  After reading Teddy’s history, no one ever expects to meet the kid that walks through the door.  They make me tell his history over and over because they can’t understand how he is where he is.  He zigs where he should zag and no one can figure out how to crack his code. This makes Teddy remarkable and amazing, but it also adds significant weight to our shoulders. Because, when others can’t figure your child out, there is this great expectation that you as their parent will find a way to crack the code. The constant questions of “why is this happening,” “what does that mean,” “how do you deal with this,” or “what are your suggestions” pour over you making you feel inadequate or less of a parent because you have no idea how to answer those questions. These are reasonable and expected questions, but they unintentionally cause you to feel worthless, because YOUR child is as much of a puzzle to you as he is to everyone else. You feel guilty that you can’t help your child succeed, because you don’t have the answers that you should.

This makes parenting a special needs child isolating, even more so if you are naturally introverted like we are. Because your life is your child’s, you only know how to speak to therapists and doctors, because you only know how to speak about your child’s medical and developmental challenges. I find it so hard to have conversations about anything else, because it has been so long since I have thought of anything else. Even when I try to not talk about him, I somehow always circle back and make it about Teddy in the end. I do struggle with this so much, but it is something that is so hard to break. So becoming friends with someone who doesn’t live in this world with you is so hard. I truly no longer know how to interact and so I just shrink back into the shadows and stay safely in my little world of Teddy. With our daughter, I realize this is not going to be something we can do, so I am trying very hard to push myself out there and not allow her to get sucked into our world.  We are giving her the chance to find herself and create her own world, but what I find is as soon as they find out she has a brother with special needs, the questions start flowing and I find myself talking about Teddy again. 

While this is often hard to navigate and not let tear you down, there are seasons when it all becomes too hard. We are currently going through a tough season.  A season when the weight of his medical needs, neurodivergent challenges, developmental milestones, and limitations in independence are causing Teddy’s world to be spinning off its axis. And since Teddy’s world is my life, it is causing my strength to crack.  Every day is another phone call about doctors’ appointments or medical procedures.  It is another call to a DME asking where supplies are or fighting with insurance about something. It is talking to nurses and case workers constantly, answering the same questions over and over and over again. It is struggling to understand why he is struggling in school so much or why things are so different right now.  It is figuring out what medicines need to be adjusted and added or deciding which ones aren’t worth the side effects. It is being so excited and proud about new milestones, while at the same time being overwhelmed with how much more work those new milestones are creating. It is constantly thinking about the future and worrying what will happen to him if something happens to you. It is worrying that you aren’t doing enough to give your other child their own life and making sure they feel they are not responsible for taking care of their brother. It is struggling to find the balance in our own social lives, marriage, and careers. It is fighting every single day to not let it all break you, because no one has time for you to fall apart because you are your child’s world.  You are the one that keeps it turning and not spinning out of control.  You are the balance, the glue, the narrator, the interpreter, and the rock. And that my friends is actually hard, very hard.  

But you know what?  I wouldn’t change it for the world, because I was chosen to be his parent. I realize not everyone is suited for this path and I get strength from that.  I will continue to fight to give both of my children the best possible chance at their own individual futures, but in the meantime, I will keep pushing forward, because it is a beautiful life. In the end we are parents, and the bottom line is…parenting is hard for everyone, but so worth the effort.

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