Friday, June 27, 2014

Special Needs: What Relatives and Friends Should Ask

We had someone over for dinner. During the visit, all went well. We had a nice conversation. The kids behaved and ate their food. We kept the meal simple. The house was pretty clean. On the surface, it was smooth and uneventful. And nice to have him visit.

But after he left, I cried.

I cried, because sometimes even close friends and members of our own family do not always know the details of our struggles. How would they know unless we tell them?

I sat on the bed and told my husband why I was sad, and he listened and completely understood. My husband is my best friend in life... he is the only other person who truly understands.

I felt like we lived the night in two parallel worlds. The real world, and then the on-the-surface, everything is fine and normal world.

With our visitor, we talked, we ate, and I mentioned a few details about Lilli that really surprised him. I tried to explain a few things, but felt that really explaining would be too much information, and that he might not want to hear all that stuff.  I guess I wasn't sure. He didn't ask, so I didn't explain. There is also a part of us both that feel like some people should already know. That they would know if they would just ask.

But that is just not true. I am realizing this. It is partly my fault for not helping them understand.

When it comes to special needs, people do not know what questions to ask, so they don't ask. And that even includes close friends and family.

A relative once told me after she had read several of my blog posts, that she had no idea that I had been struggling with certain things. This person and I are very close, so she was surprised. I didn't keep it from her on purpose. I just...don't always bring things up. She didn't ask. I don't know why I didn't tell her. She pointed out to me that I seldom complain about things. I didn't realize that about myself. I thought I complained a lot - everyone complains. I try not to complain too much.

Writing it out is a different story. I really spill it here sometimes. There's no way I could ever tell someone all of these details about our lives in a conversation. Not unless you took me out for coffee somewhere without my kids and really asked me about things for several hours. And that happens so rarely that I guess it's partly why I write - to get it out. But many of our relatives and friends don't read this blog. They might know more if they did. That's ok, I'm not offended. It doesn't mean they don't care...I don't think. They just aren't into reading it. That's alright.

Here's why I cried: Because he just didn't know about certain things we struggle with as parents of a child with special needs. And sometimes that mere fact makes us feel very alone. It's always better when you feel like people understand you. He cares a lot. We know he does. But no one can really know.

I mentioned that our ABA therapy was coming to an end, and that Morgan, Lilli's therapist who has become like family to us for three years - like a sister and best friend to Lilli and like a daughter and friend to us, is moving away. He asked if we couldn't just find another therapy to do with Lilli, or another therapist. I tried to explain it, but I couldn't. I could not explain to him that I feel like a part of our world is falling apart, being torn away, and that I cried for an hour after Morgan left today, because what will life be like without her? Instead I rambled about the waiver program ending, and that we will not even get ABA therapy at all anymore, and that there is nothing - nothing next. I realized I could not possibly explain in just a few minutes what all that means for our I just didn't explain.

Instead I mentioned some of the many things Morgan had worked for years to teach Lilli - like how to put a plate in the sink, how to sit on a swing, how to pull down her pants when she goes to the potty, how to communicate simple ideas on a speech device, how to wash her hands....

Many people do not know that we must help Lilli with even the smallest of tasks.

I explained that she has trouble turning faucets on, that she cannot get the soap out of the hand pump by herself...that we have to prompt her to rub her hands together, turn off the water, and that Morgan has been trying to teach her how to get the towel and rub her hands on it every day, multiple times a day for several months now. It's not like Lilli doesn't feel like doing it. She...doesn't know how to make her hands and body do it. I felt like explaining all of that was... a teeny attempt to get him to glimpse how much help Lilli needs all the time. It felt like a drop in a bucket.

No. A reservoir.

Later, I mentioned something about Lilli recently having a bad seizure. He didn't know, but it was not like we called people to tell them.  He was immediately concerned and asked if she was ok. I said yes, but I didn't really go into detail. He didn't ask about details, so I didn't tell him. I didn't explain about how she had been taking a nap, and Morgan yelled to us in a panic and Jasen and I tripped over ourselves racing back to get to her, how Jasen yanked her clothes off and gave her a rectal dose of Diazepam and Morgan and I ran to get the oxygen tank out of the next room because it was a bad one, we could tell. But this is "normal" to us. How would people even have any frame of reference unless we told them what it was like? Most people do not know that every time Lilli has a seizure, it puts both of us in a depressed mood because it is the most helpless feeling we have in life, and it has been happening for ten years. We don't bring it up to others, because it is just a part of our lives. But it is traumatic every single time. It sets us thinking about a list of depressing thoughts, and we have to comfort each other and pray, because there is nothing else we can do.

But I guess other people don't know unless they ask.

During dinner, no one spoke about how we feed Lilli because it is so hard for her to feed herself. This is our normal, and he knows this. But most people do not know the incredibly long story behind all of her feeding issues, and how we have struggled so much for her whole life. We don't talk about it unless someone asks.

When Lilli walked by later, I knew she had had an accident, and I swiftly took her to the bathroom to change her and give her a bath. I didn't say anything. Most people might not know that she is still potty training. We don't really talk about that.

Anyone visiting would probably not know that in the bathroom, I do every single task for Lilli. That when I gave her a bath that night, I took off her clothes, helped her get into the tub, that I scrubbed her and washed her hair and rinsed her off and helped her climb out, that I dried her off and dressed her in her pjs (putting her arms in her sleeves, helping her step one leg at a time into her shorts while she held onto me so she would not fall) and brushed her hair.I do all of these things for her even though she is ten, because she cannot do any of it on her own, but my seven year old can do all of those things by herself.

Most people would not know that when we go to bed, that Lilli sleeps in our room, and that we take turns listening for her all night long, making sure she is not having a seizure, and that sometimes she wakes up in the middle of the night and we have to help her go to the bathroom or lay with her to help her go back to sleep. People do not know that we feel stuck in this less-than-ideal sleeping situation, because how do we get out of it? How do we sleep at night knowing that Lilli could have a life threatening seizure and if we are not there, we would not hear it or know? Even our closest family and friends do not know how this affects our lives, our sleep, our family, and our marriage.

Friends and family would not even know to ask about any of that.

Over dinner, we talked about traveling, and places we might like to go one day. I said I would love to go to Hawaii one day. But I didn't say outloud how it depresses us that we cannot ever leave Lilli and that we don't think we will ever get the chance to go to Hawaii or any place like that. He didn't ask, but I feebly attempted to ramble about it anyway, that we cannot leave Lilli to go away, that we have never left her over night, and that we can't just leave Lilli with any regular babysitter. I tried to explain it to him, but then I realized he couldn't truly understand. No one can. It sometimes feels like it's too much to explain how and why.

This is my fault, when people don't know. I cannot fault others for not knowing what to ask. And I think that other parents of children who have special needs might feel this way sometimes - like even their own relatives don't understand what they are going through, raising a special needs child.

Parents, they will not know or understand unless they come over, see it, and you tell them.

So here is my attempt to get this idea out there to friends and relatives: Visit. See what life is like. Spend time with the family. Ask lots of questions.

Here are a few ideas:

  • Tell me about some of the things you are working to teach your child. What do you struggle with? What is your child's biggest recent accomplishment? (Even if it's tiny)
  • What kinds of therapy does your child have? How often? Do you drive there or does the therapist come to your house, and how is it going? What goals do they work on in therapy? How do you think it's going?
  • How are things different when it comes to raising your special needs child compared to your other children?
  • What do you wish other people knew about your lives?
  • Tell me about a typical day with your child. What are the little things that most people take for granted in life that you struggle with each day?

Going a little deeper:

  • How do you feel about the future? What are you hopeful about? What worries you? What scares you? How can I help?
  • Are you getting enough rest? Do you need someone to give you a break? And if you do, would you ask for it or are you waiting for someone to offer?
  • Do you feel supported by our family? Are there specific things we can do, that we don't know about?Is there something you are struggling with, that you wish our family could help you with?
  • What do you need the most right now from our family? Do you feel like we understand what you are going through?
I really hope this helps someone. If you have a child with special needs, remember that you need to explain and help others understand your lives, and be specific about what you feel and need. If you know someone who has a child with special needs, (or you are related to someone) please know that it is safe to assume they are definitely struggling in some way. Raising any child is challenging. Raising a child with special needs is a completely different ballgame. Know that they probably would not tell you what they are struggling with unless you come right out and ask them.

For me personally, most of the time I just need encouragement. I realize that no one else can step in and fill our shoes and care for our daughter like we do. And that's OK. I'm not asking anyone else to give Lilli a bath, or come over and watch her at night for seizures so we can sleep like a normal couple. But having a child with special needs is a lifelong commitment in physically caring for another person, and it is extremely overwhelming at times.

It helps us to keep going when we know when we are surrounded, encouraged, and supported by loved ones.

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