Tag Archives: special needs

Finding Reasons to Celebrate Your Special Needs Child

One of my favorite things about parents of special needs children is that we celebrate every little bit of progress our kiddos make. We enjoy even the tiniest bits of progress our children make because it sometimes takes them weeks, months, or years to learn to do things that neuro-typical children learn to do in a few weeks, days, or even hours. So when our special needs children finally learn a new skill or even master something such as standing in line at the grocery store without having a melt-down, it gives us a reason to celebrate!

It’s so much fun watching our children learn to roll over, crawl, walk, and talk. In fact, we usually take for granted that our children will learn those things and forget how awesome it is to witness the progress our children make from birth—when they can do almost nothing for themselves—until they become young adults—who are able to take care of themselves independently.

I remember how thrilled my husband and I were when, at age 4, Hannah finally learned to feed herself! (She was—and still is—very hypotonic, so it was very hard for her to learn to hold and scoop food with a spoon or spear food with a fork.) We were overjoyed when she learned to put on her own socks and shoes. We celebrated when she finally (just a few years ago) began to be interested in and enjoy opening her own gifts at Christmas or her birthday.

But none of those experiences were equal to the one we had just a few weeks ago.

Several weeks ago, my 20-year-old daughter, Hannah–who has severe autism and is totally non-verbal, finally received her new augmentative communication device. It took us months of waiting and paperwork (and lots of work on the part of her speech pathologist for whom we are so grateful!!) before it finally arrived, so we were thrilled when it was delivered to us!

We were also a bit nervous because the communication devices we’ve tried in the past turned out to be very complicated, and Hannah wasn’t willing to use them. In fact, she flatly refused to use them after a while. We began to think that perhaps she just didn’t have an interest in communicating with us and that maybe she was content to point to things she wanted or take us to the things she wanted us to get for her or help her do. We began to think that we’d never have the chance to celebrate Hannah’s ability to talk to us—through the use of her own voice or of a communication device.

But thankfully, we were wrong!

Hannah’s new device, we call it her “talker” to make it simple, is a lot like an iPad. It has a main screen from which she can choose a main topic. Then, once she chooses a main topic from that screen, it takes her to another screen with more options related to that topic. Once her speech pathologist and I got the device set up the way we thought it would be easiest for Hannah to use, we began showing her how to get to different menus depending on what she wanted to communicate to us at that moment.

When Hannah’s younger sister, Mary Grace (age 12), saw the new device, she wanted to check and see how it works. She also was curious to know how Hannah would react to it and how much success she would have using it. For that reason, she went to the main screen, showed it to Hannah, and said, “Hannah, I want you to tell me something with your new talker. If you could tell me just one thing, what would it be?”

Immediately, Hannah looked at the screen, searched her options, and reached out to touch the topic she had chosen. Then the three of us—Hannah, Mary Grace, and I—heard Hannah’s new “voice” say, “I love you!” Mary Grace and I then looked at Hannah to see a huge smile on her face and a look that showed how happy she was to have finally been able to tell her sister that she loves her.

Of course Mary Grace and I began to cry. For the first time in 20 years, Hannah was able to express in words her love for her sister! It was a moment that I’m sure none of the three of us will ever forget. And you can be sure we celebrated that moment!

You see, even though it can be frustrating and tiring caring for a child with special needs, there are moments, just like there are with any other child, that are worth celebrating. There are moments of joy in the middle of the difficult times. There are breakthroughs that allow us to hang in there a little while longer.

As difficult as things sometimes are, I’m very thankful for these good times. I’m thankful that God has blessed us with this new opportunity for Hannah to use her “voice” to explore a whole new world that has opened up to her if she’ll take advantage of it. I’m thankful for the chance to share with other parents of special needs children and hopefully encourage them along the way.

In spite of circumstances that sometimes seem too difficult to handle, God can and will give you reasons to celebrate along the way. Just as Hannah loves her sister, God loves you and your special needs child. So get ready to celebrate!

If you have a child with special needs, what achievements are you celebrating recently? Tell us so we can celebrate with you!

To the Older Mom (on Encouraging Younger Moms)

Helping Your Special Needs Child Transition to Summer {8 Tips}

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For many children—especially special needs children, but it can apply to typical children too—the arrival of summer can be a little stressful because it often means a huge change in routine. My autistic daughter has a hard time transitioning from our “regular” homeschool year to the less-structured summer months. We usually continue to homeschool over the summer, but because of special summer activities, vacations, and a more relaxed homeschool schedule, there are still some pretty big changes.

I put together a list of ideas that I try to keep in mind at the beginning of each summer to help her transition go a little easier. I hope these ideas are helpful to you and your family too!

Talk about it ahead of time: One of the easiest yet most important things I’ve ever done to help my daughter get ready for the transition to summer is simply to start talking about it at least a few weeks ahead of time. I don’t go in depth or make a big deal out of it. I simply mention to her that our regular school year will soon be over, and I tell her about a few of the special things we’ll be doing that summer.
Let your special needs child help plan a summer bucket list: If your child is old enough and is capable of giving input, it’s a great idea to let your child make suggestions for places she would like to go and things she would like to do. If this is too hard for her, make a list of activities and destinations for her to choose from. Use pictures (cut from magazines or printed off the internet) to show the choices if your child can’t read yet. Then go through the list together and make a list of the things you know you want to do over the summer. Keep in mind that you might enjoy choosing fun hobbies to work on over the summer too!
Talk about how much school work you will do over the summer (if any): Let your child know about any school work that will be done over the summer and discuss the best days and times. For example, my daughter likes to know that we’ll do 2 hours of school work each Tuesday and Thursday morning from 9:00 until 11:00 a.m. Younger children may not need you to be that specific, and that’s fine. Older children, though, and many autistic children like to have a more exact idea.
Keep as many routines as possible: Even during the summer, we attempt to get the children in bed at about the same time each night, and we try to get them up at about the same time each morning as much as possible. For my autistic child, we keep other routines too. One example is that she gets to play the computer for 30 minutes each morning after she brushes her teeth and gets dressed. These simple routines can make the less structured days of summer seem more familiar.
Plan some “down days” to help keep your child from being overwhelmed: Don’t feel like you have to cram every day full of activities! For many children (and parents!) having too many places to go and things to do is overwhelming. Maybe you can declare one day each week to stay home and take a break. Maybe you and your children can read the library books you’ve checked out or play in the sprinkler or even watch a movie together and just relax. You don’t have to go somewhere and do something every single day. It’s ok to have some days at home.
Create a calendar of activities, obligations, appointments, etc. where everyone can see it. (Or consider making a more visual schedule.): Depending on the age and level of functioning of your special needs child, you may choose to create a calendar with commitments, appointments, and activities listed on it, or you may want to post a visual schedule instead. (A visual schedule is simply a calendar or chart with pictures instead of words.) If looking at a calendar showing a month or a week at a time is too overwhelming for your child, you may want to post a schedule each evening that shows activities for only the following day.
Try to get together with friends—especially a close friend or two—over the summer: It may be hard for your child to understand why he won’t see all of his friends over the summer like he did during the school year. Be sure he understands that families often go on vacation and do other special summer activities that cause them to be away from home. You might need to explain that his friends will be back even though they may be away some over the summer and that he will once again see his friends on a regular basis when school begins again in the fall. And be sure if at all possible to plan a few special play days when he can get together with his friends over the summer.
Create (or let your child help create) a back-to-school countdown chart or calendar: This could be a calendar on which you mark off the days, popsicle sticks in a jar (Just start with one stick for each day of summer break and remove one stick each day.), or even a paper chain (Similar to the popsicle sticks. Just make a paper chain with one link for each day of summer. Simply cut off one link each day.). If the countdown is something your child can participate in, it will be more fun and meaningful.

While making the transition from the school year to summer may still be a bit difficult for your special needs child, I’ve found these ideas to be very helpful for my family. Some of the ideas take a small amount of preparation, but all of them can be done easily and without spending a lot of money. And your children can help with most of these ideas, which helps make the transition more real and more fun!

Do you have suggestions for helping your special needs child (or typical children) transition from the school year to summer? If so, please share your ideas in the comments!

Things Not to Say to Moms of Special Needs Kids

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In my almost 20 years as the mom of a severely autistic daughter, I’ve been questioned, judged, accepted, ignored, loved, rejected, and just about everything in between! I’ve also learned a lot. One of the things I like to do whenever possible is help and support other moms of special needs kids. But lately, I’ve realized that a great way to help special needs moms is to share some of my own experiences with moms who don’t have special needs kids and who might feel uncomfortable or not know how to react and respond to those of us who do. So today I’m sharing with you a few tips and ideas that I hope will be helpful.

First, please try not to judge us or our children. Thankfully, most people are pretty understanding. There are those, however, who are less than understanding and a few who are downright rude. When my daughter throws a fit in Wal-Mart, it’s not because she’s spoiled. It’s because she has a hard time with crowds, is over-stimulated by all of the products and all of the noise around her, and she isn’t able to tolerate waiting in line very long. But I feel like it’s important for her to go with me now and then because, just like you, I run out of milk and eggs sometimes, and I can’t always find a sitter so I can go to the store. For that reason, she needs to stay in the habit of going with me when it’s absolutely necessary. It’s not much fun for either of us, but it has to happen once in a while.

Second, please don’t act like our kids have the plague. Our kids are people just like other kids even though they may look and act different. We know you’re a little nervous around them because you’re not certain what they may say or do. But it hurts our feelings (and probably our kids’ feelings too) when you intentionally avoid being around us or go the other way when you see us coming. It hurts when we see your nervous stare as we pass by. Can you please just smile as we go by and maybe even say hello? It’s ok to look at us as long as you smile. Really.

Third, please don’t talk to our children like they’re babies (unless, of course, they are babies), but please do talk to them. My daughter is almost 20 years old. Even if you’re not sure, please talk to her as if she understands what you’re saying (she does). She may not respond, but she hears you. Even though she’s non-verbal and won’t answer you, I’m sure she enjoys knowing that you took the time and made the effort to include her in your greeting, and I appreciate it too.

Fourth, it’s ok to ask about our kids, but please be polite. Instead of asking, “What’s wrong with your daughter?” which happens more than you might think, please say something more like, “What’s your daughter’s diagnosis?” or, “Does your daughter have a diagnosis?” I don’t mind answering questions about her, but I feel much better about it when I feel like you’re asking in a polite way.

Fifth, there are times when we may have more trouble than usual being cheerful and carrying on with a smile, so please try to be understanding and supportive. For example, our kids’ birthdays can be especially hard for us. When our kids are still getting stuffed animals and blocks for their 16th birthdays, it’s hard for us not to be a little bit sad about it. (I’m not saying that you shouldn’t give our kids those things if that’s what they like. It’s still hard for us, though, to acknowledge that they’re at the stuffed-animals-and-blocks-developmental-level when they’re teenagers.) We’ve dreamed of our children one day being able to do things that are age-appropriate instead of appropriate to their developmental levels, yet we know that day may never come. So if we choose not to make birthdays a big deal or if we seem a little bit sad, just be supportive and kind.

Sixth, please resist the urge to tell us that “God gives special children to special parents.” We appreciate the sentiment, and we know you mean it as a compliment, but most of us don’t believe that God loved us so much that He “zapped” our kids. Yes, God loves us. That’s true! But we don’t believe that He’s showing us how much He loves us by giving our kids life-long physical or mental illnesses. Bad things happen to all of us even though God loves us all very much! Because Adam and Eve sinned and we live in a fallen world, sicknesses and injuries happen. So whether or not you agree, please just don’t say it. Trust me.

Finally, please don’t tell us that you understand. We know you mean well…really we do. But the honest truth is that you don’t understand because you can’t. And that’s ok. We don’t expect you to understand. All we really want is for you to let us cry if we need to. Let us be sad for a while if we need to. Let us know that you love us and that you’re there for us. You can’t take away the heartache or change our circumstances, but you can help us bear them. You can be our friends and love us just as we are. And we will love you for it.

On the inside, most moms just want the best for their children whether they have special needs or not. We moms and our kids are all better off when we support each other, and it’s my prayer that these tips I’ve shared may be helpful.

If you have any tips to share, please leave them in the comments!

Waiting Until Your Child Is Ready

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We face a lot of pressure as moms. From the moment our wee one is born we are presented with a variety of options for this tiny bundle that we are now completely responsible for. Will we co-sleep? How about baby wearing? They grow and there are more choices – what will we feed them, how will we dress them, what will we let them watch on tv (if we let them watch tv at all?!)…

In fact, I don’t think the choices and decisions have slowed down at all. In nearly fifteen years of mothering, the decisions to be made haven’t lessened, they have only changed. Last week it was choosing to “parent teach” driver’s ed and choosing which curriculum to use! The fact remains that we are still, consistently, one hundred percent responsible for these little humans who are ever-growing into little adults.

Often we don’t see the results and benefits of the choices that we make. Sometimes…we do. And it can be so, so sweet.

As homeschool moms we add a new set of choices and pressures to our already full plate. We feel the pressure for our children to succeed and do well. We have to fight the voices (and possibly the state regulations) that tell us what our children need to know and when they need to know it. Sometimes we know that this child is different or that child isn’t ready and we fight the fear that someone might think less of us, or our child, if they can’t read or write or do math at the right age.

Truly, one of the hardest and best things we can do for a child that isn’t ready for something.. is to simply wait until they are.

I will say it again: Waiting for our children to be mentally, emotionally and physically ready to learn something is better than pushing them too soon. It’s hard, . . . but it’s worth it.

When I taught my oldest daughter to read–well, it was a piece of cake really. She wanted to do it, she was eager, she learned easily. She was reading Dick & Jane and The Cat in the Hat by five years old. She progressed quickly and sped through 2nd and 3rd grade “I can read” books like nobody’s business. In 4th grade she was easily at a 6th grade (or higher) reading level.

{I’m not going to lie; I thought I was pretty good at this. Look at how well my daughter is reading. I’m so proud of her. I did a good job teaching her. Homeschooling for the win!}

You know where this is going don’t you?

That’s right; my second daughter came along and she was completely different. She is wired differently, she learns differently, she has different strengths. Reading wasn’t one of them. It was harder for her and the same approach that I used with my oldest wasn’t working. At all. Every time I pushed, she resisted and backed off.

So we regrouped and tried a different, more hands on approach. We slowed down a little and took things at her pace. Once she saw that she could do it, everything clicked. I saw the light bulb come on and she began reading, too, at age 6. Now, she may not have ever really “fallen behind” but I learned an important lesson at this point. Step 1: Ignore the social pressure. Step 2: What my child needs is a gentle, steady, patient teacher.

That would be a very important lesson I would need to know, and remind myself of frequently, when my third child came along.

My son, as boys are in many ways, was very different from my two girls. At first he seemed to thrive with letters and numbers and I was t-h-r-i-l-l-e-d when he could identify, name, and write all of his letters by age two. (Thank you very much to Barney and Blues Clues.) I have the cutest video of him sounding out some simple three letter words at age 3 or 4, while eating a popsicle and just looking hands-down-adorable.

And then everything changed.

Reading came to a complete, total, grinding, screeching halt.

For whatever reason, my son was not mentally and emotionally ready to move on. He could do it, I knew he could. But he wouldn’t. And I was afraid to push too hard for fear of making him hate reading. I reminded myself of what I knew inside-that I could be patient and it would be okay. But he was four then,. . . and there was plenty of time.

And then he was five.
He turned six.
And then seven.
He didn’t. Want. To. Read.

How long is too long? How long are we patient? How long do we wait??

By age seven I was getting questions and comments. I would rebuff them gently and positively. “He will get there,” I’d say, “There’s no hurry.” I would come across articles that would assure me that I was doing the right thing. I had friends who had been there before to encourage me. It’s hard to tell that Mom Worry to keep her voice quiet, though. You still wonder if you are doing the right thing.

As time passed, I just kept to my gentle and steady approach. Lessons were very short and simple. The first sign of frustration signaled the end of the reading lesson. Many days there were no lessons at all. We looked for opportunities to sound out words elsewhere – in the free Lego magazine, on the Sonic menu board, in the Netflix episode list. Any opportunity to read that didn’t ‘look’ like a reading lesson was seized. In the mean time, I was patient. Eventually, like a heavy locomotive slowly coming to motion, the wheels began to turn again.

At the beginning of one school year, a few months before turning eight, my son stopped arguing as much over his reading lesson. He began to show a little more interest. And the most amazing thing happened. He began to learn and grow again.

It was beautiful. He had still learned and grown during his years of waiting, because I never backed off entirely, and he could read a lot more than he had allowed himself to realize. But until he was ready to embrace the idea of reading with willingness, he was never able to flourish.

That’s what we were waiting for, that’s what he needed. Once he was ready to move forward with reading he was able to do so with great speed, making up for all the “lost time.” In two years’ time he went from a beginning-of-first-grade reading level to an end-of-third-grade reading level.

Even better: since turning nine my son has shown an increasing desire to read for pleasure.

He takes books with him, he has asked for bigger books to read. I won’t forget the day, only a couple of months ago, when he took a book to church “to read while you practice for worship.” Did he read it? Yes he did. Since then I’ve been finding him with other books and magazines. Only last week he asked me to install the Kindle app on the tablet he worked and saved for, “so I can read books on here, too.” He’s in the middle of Stephen Altrogge’s “The Last Superhero.” My momma heart swells with joy beyond words. My boy reads! He reads well. And he likes it.

So is it worth it to wait until your child is ready? Should we shuck tradition, state standards, and cookie cutter models? Do we ignore the naysayers and the genuinely concerned and press on down a path that looks an awful lot like “doing nothing?”

Listen, I can’t speak for every child. And I can’t speak into every situation. There may be legitimate learning issues such as dyslexia that is hindering your child that would *need* to be addressed and helped. But I believe whether the child is struggling, or simply not ready, that pushing hinders more than it helps. I believe the best course is to always set sail in the general direction that you want to go, at the speed that your child needs for that time, and let the rest of it go–give it to God. Be gentle, steady, and patient. Slow and steady really does win the race sometimes.

I pray that whatever worries you have for your child, that you able to find peace in the middle of the hard decisions. I pray that while you wait for your child to embrace learning you find strength and hope. I pray that you are renewed and encouraged to not give up but press on. Waiting for our children to be ready to learn is one of the hardest and best things we can do for them.

Amber

Confession: I Have a Comparison Problem

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I have a problem with making comparisons. Sometimes making comparisons can be a good thing, like when one is comparing prices when shopping in order to get the best deal. There are other times when it’s a very bad thing! For example, it’s a bad idea to compare your husband or children to someone else’s. That does not usually turn out well! In those situations, comparisons simply serve to make us feel “less than” someone else, feel sorry for ourselves, and make us look at our circumstances and choose to be unhappy.

I was talking with another mom recently, and she shared that her husband was very unhappy with their teenage daughter. The daughter is very bright, but she just doesn’t apply herself to her school work. She’s also not very motivated when it comes to helping around the house or in the yard. She’s a talented musician, a very creative writer, and a sweet girl who is always polite and kind to others, yet her father isn’t happy with her because he sees other young women her age who make straight A’s and help in the house or yard without being asked. Instead of being thankful for his daughter and the gifts and talents she possesses, he sees what she doesn’t possess.

As I was listening to this mom tell me about her sadness because her husband is so displeased with their daughter, I realized that I often do the same thing! Instead of being thankful for my children and their own unique personalities and talents, I often find myself wishing they were different in one way or another.

For example, my 18-year-old son does not enjoy his school work and really isn’t terribly motivated to make good grades (except that, because we homeschool, he has to redo assignments until I’m satisfied with his work). Over the years, I’ve wished many times that he would do his school work cheerfully and that he might even be able to enjoy it to some degree. Guess what? He’ll graduate from our homeschool next year, and he still doesn’t enjoy doing school. And he still doesn’t really care a whole lot about making good grades—except to keep from doing assignments over again.

But I’ve begun to realize that, although school may never be something he enjoys, I can be proud of him for the other talents he possesses. For example, he’s extremely smart and creative. From the time he was a little guy, about 2 or 3 years old, he could tell you nearly anything you wanted to know about any dinosaur that ever existed. And he could take blocks or Legos and create quite a complicated habitat for his toy dinosaurs.

As he’s gotten older, he’s branched out into building wonderful Lego ships and elaborate space stations. He’s also quite talented at strategy games (both board games and video games). So, while I admit that I would have loved to see him take pride in his school work and be motivated to make good grades, he is definitely talented in other areas and in other ways, and I’m thankful for that.

Isn’t it a good thing God doesn’t decide how much He loves us based on our achievements and talents or any other criteria? He loves my children and me simply because He made each of us! Wouldn’t it be wonderful if we were that way? If we could (or would) simply stop worrying about what our children (or we ourselves) don’t have and be thankful for what we do have? If we would stop comparing our husbands or children or houses or cars to others and be grateful instead?

God loves each one of us unconditionally! He loves each one of us simply because He made us! If we never make good grades or go to college. If we never have a job with a fancy title or earn a degree with lots of letters behind it. If we never bring thousands of people to salvation. If we are simply His children living quiet lives of service to Him, that’s enough. If we’re never well-known. If we never make a lot of money. If we simply remain faithful to our husbands and take care of our children and teach them to love Him, it’s enough.

So next time you feel discouraged, remember that God loves you. The next time you feel worthless, remember that you have worth simply because God created you! The next time you wonder if God loves you, remember that He loves you simply because you belong to Him. The next time you wonder if what you’re doing really matters, remember that it does because He gave you your job as wife and mother. And that is enough.

How to Love Your Husband While Bringing Up Special Needs Kids

Heidi St. John

Speaking the Truth in Love