Exhausted: What Being a Special Needs Mom Means To Me

People wonder why I’m so exhausted all the time. After all, I work from home and my oldest is in pre-k all day. My toddler is relatively low maintenance except for those days he decides he’s two years old. 

My oldest though is another story. He has Aspergers, the high functioning form of Autism. He also has substantial Sensory Processing Disorder. Some days are relatively good days and he is ALWAYS perfect in school. Then he comes home. We have a routine. Snack, piano, homework, chores. Then we have dinner. Dinner is a struggle. Then we have the evening. He’s all over the place. He whines. He throws things. He cries. He argues. I could say that the sky is blue and he will argue just for the sake of arguing. His tantrums and meltdowns are epic. Like, onlookers debating to call CPS epic. He hits. He screams. He cries. He throws himself on the floor in a puddle of frustration. He’s so tired but doesn’t sleep well, and on top of that he’s got pretty bad allergies. Trying to do things like soccer and piano lessons are usually futile. Any sort of social gathering is pretty much a guarantee for tears and tantrums. 

We knew something was off about him around 18 months old. Looking back, it’s painfully obvious that he had major sensory issues even from birth, but you know, first child syndrome... Plus, he cried like, all day long. I mean, all. Day. Long. Once he turned 18 month old, he suddenly started having tantrums and meltdowns that would last all day long. He’d be out of control. This just got worse and worse through 2 years old and even worse at 3, which was exceptionally awesome since we also had a newborn. Eventually, I started looking into how the heck to get him into some sort of day care or preschool but no one would take him and it was painfully expensive. Finally, we looked into the local school district for answers. He got evaluated and we got evaluated and he was a perfect candidate for the special education pre-k class. 

He is in the special education program at his school and they are wonderful with him. His speech and motor skills are nearly up to average levels. His social skills are improved although still need a TON of work. Plus, he loves school and is great and well behaved for his teachers. He’s just out of control for his daddy and me. He’s also getting more comfortable with his grandparents and starting to get out of control with them too, especially when his routine is disrupted. 

Oh, routine! I have no problem with it except that it doesn’t always work out. As a baby, he had to be fed pretty much every three hours on the dot. No more. No less. His nap had to be precisely at 1:00 or he wouldn’t nap. I get it. He needs routine. I’m fine with that. We have to walk the same route to and from school every day and he’s got his routine of things he does on his way to school. 

He’s a good kid. On good days, he’s so loving and sweet and caring. He’s incredibly smart too. He keeps testing multiple grade levels ahead. He wants to be an electrician, which I think is awesome. He’s obsessed with electricity. He knows more about it than most grown ups, I would imagine. 

Then, there’s bad days. These are the days where I question my existence. I question God for giving this to me. I just want to curl up and scream at the world for awhile. But I can’t. My son needs me. Even though he’s screaming and fighting and pushing me away, he needs me. I don’t ever get a day off, although my husband does do quite a bit with him, especially when I’m at my wits end and just... can’t. 

It kills me that he has autism. It kills me that I can’t fix it or make it better. It kills me that I will never have a “normal” relationship with my oldest son. It kills me that people don’t understand what I’m going through because “he’s seems so normal.” “He talks to me and makes eye contact.” “He needs manners.” “You need to discipline that kid.” “But he’s so well behaved with me.” And on and on and on. 

I often feel like a failure. I often feel like I can’t do it anymore. I often feel like I’m not giving my youngest son the attention and the mom he deserves because I expend so much energy on my oldest. 

I’m exhausted. I often can’t sleep because I’m so exhausted. I worry about him. I worry about me. I worry about my family. I worry he will never have a normal life. I worry that I can’t do it. I worry that I’m failing. I worry someone will try to take him away from me because they don’t understand. 

I can’t figure it out. Discipline is a fine line of balance and as soon as I think I have it figured out, he changes on me. And of course, things that work one day suddenly don’t because it’s Thursday and the neighbors across the street planted new flowers and the dog didn’t sniff his hand and lick his cheek and the truck that’s usually on the corner of 8th street isn’t there this morning. 

I’d love to have more kids but the thought of another with Autism/SPD is enough to consider getting my tubes tied. I could totally handle another child like my youngest who is happy and independent and snuggly and goofy and fun. There’s a deep fear that we’ll have another Aspie and there’s no way I could handle it. Not again. 

So yes. I’m tired. I’m exhausted. I hate being a special needs mom. I wish I could make it all better. And I know it could be a lot worse but that doesn’t keep me from wallowing once in a while. Add to that my hormone imbalance and anxiety/depression issues and you get me, the mess you see before you. 

I’m exhausted. And my guess is I’ll be exhausted for the rest of my life.