I don’t like to dwell on the fact that one of my children has significant special needs. Most of the time I just have three children, one of whom needs me a little more than others. But she’s just my daughter and I’m just her Mom. It’s rare that I think of us as different.
But this is what is the difference. It is exhausting. It just is. There are times when I try to figure out why I’m so exhausted, why I’m so stressed, why I can’t sleep at night. It’s because this parenting of a child with special needs is hard. It just is. I honestly don’t like to admit that because I think it makes me seem weak or that I don’t love my daughter. But that’s not true. Not by a long shot. What is true is that when you’re a good mother, special needs or not, it’s exhausting.
I think most of it is the worry and the uncertainty. Olivia’s had a really difficult time at the camp we sent her to. It takes her a while to get used to a new place, which is part of the reason why we sent her, but after 3 weeks, she still is having a hard time. Yesterday I got a call from the camp that she was making herself bleed and hitting herself so hard that they were afraid she would leave bruises. They asked if I had any suggestions. What was I supposed to say? I just went and picked her up. Then I called Matt because I was upset and then we kind of argued because he thought I should have just left her there. We’re both just frustrated. Because it just shouldn’t be this hard. It’s like she’s in this weird middle place of kids with special needs where she’s not disabled enough for certain groups and too disabled for other groups. I’m here to tell you right now that we parents of kids with special needs get very little help. It’s like being dropped off in a foreign country without a map or money and you don’t speak the language. It’s exhausting.
Even with her advanced verbal skills for having Cri du Chat, she still can’t tell us many things. Like why exactly she’s upset. She has a really difficult time with feelings and expressing them. It’s heartbreaking to see your child upset and have no idea exactly why.
On top of these worries, it’s the constant caretaking. I dress her, change her diapers, do her hair, brush her teeth, make her food, clean up her constant messes that are like a tornado came through, shave her legs, clean her glasses, help her walk, pack up the stroller, make sure she has her ipad, make sure she’s safe, it goes on and on and on. And it never stops. When you’re in the toddler stage with a child, at least you know eventually you’ll be out of it and they’ll be more independent. Knowing it will not end is what makes it so hard.
And then there’s the soul-crushing worries that worm into your brain late at night. I think part of the reason why I never relax is because I don’t like to allow myself the time to “go there”. To the place where I worry about what junior high will be like. High school. What on earth will she do after high school? What happens to her when we die? I think of her as an old woman missing her mom and dad in a strange place all alone and it makes me want to throw up. I know her brothers will take care of her but they’ll have their own life too. What will happen to her? It’s too much.
Like I said, I don’t like to think of us as different. But the fact is we are. Very different. And it’s hard. And exhausting. And we need help. And there’s too much to worry about and research and plan. It’s a constant buzzing in your head of stress and worry. That’s the difference. I wouldn’t trade her for anything but sometimes it just makes me feel better to understand what we’re going through and feel ok with it. And sometimes it’s just too much.
Elastamom's Excerpts 
Oh Tiffany! Don’t feel weak hun it’s just emotionans we all have them a variety of them and it’s totally ok to feel them all. Sophie is on;y three but I find myself in alot of difficult situations already. And your right we get little or no help and yet we manage and keep it all together. No wonder we have so many high’s and lows. Hang in there, you are doing an amazing job raising your children and you may be different to the typical world but there is a world out there you are normal in. It the world of sepcial needs, it’s a different normal but it’s our normal.
And it would be helpful if other’s were more understanding. My daughter with Ds has just started walking at age 2 1/2 and I tell people that before it was like having a 10 month old for over a year. They just look at me and stare not realizing the physical nature of having a 10 month old…on the verge of walking but a danger to themselves as they explore their world, having to be carried everywhere, diaper changes that turn into wrestling matches. I feel for you and hope that you can find some resolve with the camp. Praying for a calm mind for you. Love your blog.
I feel exactly the same way you described here. “It’s a constant buzzing in your head of stress and worry.” That’s it exactly! Followed by the constant care and battles. It’s just constant toddler stage and it never ends. Except she’s bigger and stronger than a toddler. Most days it just feels impossible.
Hugs to you. I think you are a strong and amazing mother. And you are not alone.
I’m so with you Tiffany!!!! I am right there with you – 1000 percent!!!!
Wow!!! I’m printing this one and posting it. Sometimes you hit the nail right on the head for me. I do want our girls to meet.
You said it so well. We want so badly to show the world how strong we are, how capable we are of doing it all and yet it’s exhausting to be everything and do everything we want for our families. Adding a special needs child into the mix just adds tons of extra responsibility, which usually falls squarely on Momma’s shoulders. But you do what you do with amazing grace, with a strength so many of us aspire to. Admitting to the exhaustion doesn’t make you week, it makes you human and it makes you approachable to those of us out here who are following in your footsteps.
Oh man, it is SO hard sometimes! Once again, you have articulated everything I think about, too. I’m so sorry about the camp thing… I just went on a tour of a camp near us, and was really disappointed that it was so run-down and the participants there were all sitting around and not doing much. I wondered how in the world they ever got accreditation or a license, or whatever other hoops “typical” places have to jump thru. The words of our school district special ed director kept coming back to me: “This is your option,” as in, our only choice for the help J. needs. Crap.
On the other hand, we had a wonderful experience with a vacation bible school last week. I couldn’t believe how happy and relaxed and JOYFUL she was, for the whole week! I think it is true what my DH says, that J. has a “love- sensor” – she can tell, almost savant-like, if people truly care and are looking out for her… I’ll bet Olivia has that same ability.
It really can be exhausting… and not the physical requirements, but just the mental ones. Worry, frustration, concern, guilt, anger, and keeping a smile on face when all you really want to do it cry, can suck all the energy out of you.
But those days when it all goes well, and everyone is happy, and everyone is laughing… it’s all worth it.
Amen sister : ) It is oh so very exhausting sometimes!!! For me it’s mostly the emotional/mental exhaustion that does me in, your list of soul crushing worries….yep everyone of them run through my mind, especially the one about her brother taking care of her. BUT we are lucky : )
Thank you so much for this post. You definitely nailed it with this one. Sometimes just being able to articulate how HARD it is, and why, is enough to get you through the difficult times.
Tiffany, does your state have the Medicaid waiver? This program sets up a worker (that you may chose) who helps provide care for special needs children in their own home-giving parents a chance to catch their breath and spend much needed time with their other children for brief periods of time. There are additional personal care hours which may be utilized for children who are not independent with their activities of daily living. These programs have been a huge blessing for our family. We, too have a special needs daughter with 5 P Minus syndrome as well as typically developing children who also need our attention. I hope this helps. Jen
This hit home for me right now like no other time. Lately, I find myself not only thinking that long list you wrote, but also saying it aloud and then feeling really guilty about complaining. Such a vicious circle. The mental stories we have running in our heads are utterly exhausting and never ending. *sigh* (more complaining, more guilt)
Even though I don’t have a special needs child, I have 4, an absent dad and some days I wonder, what’s the point? Is this REALLY my life? I think it’s wonderful that you shared your weariness and anxiety with us, many of us don’t dare to voice it out loud and even thinking about it makes us feel guilty… I read your post and felt much better: someone feels the way I do!
I hope things turn out well, and if they don’t, you gave it your best shot. I, for one, applaud you and all the others who live this situation.