Tag: autism siblings

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Autism and the Love of Siblings

Autism and the Love of Siblings

Anyone who has followed our story knows I often talk about how close all of my kids are. Mandy has always been Casey and Rob’s biggest defender – and tormentor – and teacher – and the one who has gotten hurt the most by autism. She will deny it forever, but I know that there were days she didn’t like autism very much. But – we all have those days. Now, Rob has Cory to look up to and model.

Keeping Rob’s face clean shaven is a chore that neither of us particularly like. I leave it up to him when he wants me to shave him. A few weeks ago, he decided he was going to grow a beard like Cory’s. Every time I mentioned shaving, he covered his face with his hands and said no thanks! I had my doubts that he would grow a full beard, but it’s his choice. He lasted longer than I thought before he asked to shave. I think he was disappointed his “beard” wasn’t as full as Cory’s so he wanted it gone.

Rob doesn’t like new shirts. He insists on the same type of shirt with the sleeves cut off. We were in Kohls a few weeks ago and Mandy found a shirt for him to look at. He refused it – tried to put it back on the shelf. Until Mandy said the magic words “Cory has one like this.” So Rob bought it.

Rob is a follower. He watches Casey, Mandy and Cory for signs of what he needs to do. He won’t wear a coat unless Casey does and he chooses which coat to wear based on what she’s wearing. He wears boots when she does (and doesn’t understand that sometimes, girls wear boots to dress up a little 🙂 ) and he checks that there are two lunch boxes every morning.

Several months ago, Cory got a new truck. We were at their house one day and a friend of Cory’s stopped to see the truck. Rob was outside, too, and so happy and excited that he could hang out with Cory and Collin as they talked about the truck. That’s what Mandy and Cory do for Casey and Rob – they include them in everything. So many siblings are tired of autism and disabilities and I completely understand that, but somehow, I got lucky enough that Mandy and Cory want to spend time with them.

Casey doesn’t tend to follow others. But she is careful to watch out for Rob when they are together. And Rob knows that Casey feels safer holding onto someone in crowds so he holds her wrist (she is not a big fan of holding hands very often) or puts her hand on his arm. They both feel safer when they are together and as much as they annoy each other at times, I wouldn’t want to be the person who tries to hurt one while the other is there. I think there would be a fight – and my kids are too stubborn not to win.

But for all the ways they protect each other, they are just as likely to annoy the other one. Just like typical siblings. She’ll change the radio station away from the song he is listening to. He’ll play his iPad loud while she is trying to watch a video. They rush to get to a certain chair at grandma and grandpa’s house and will take it from each other. He will touch her plate and giggle. She will open his door and turn on his light (he hates that!).

We went to a Halloween dance the other night and once again, I heard “They aren’t anything alike – why not?” For some reason, since they both have autism, people expect them to be just alike. Even twins are not exactly the same in every way! While my brother and I are a lot alike in some ways, we are very different in others. I’m not sure why siblings with autism are expected to behave exactly alike.

Casey, Rob, Mandy and Cory are alike – and different. They are each perfectly who they are meant to be! Autism doesn’t define them or our family!

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Autism and Typical Sibling Behavior

Autism and Typical Sibling Behavior

Every mom knows the scene. One child is upset and the other is making things worse. I’ve shared before how Casey and Rob will try to irritate each other at times, just like typical siblings.

It happened again last week. I’m still not sure what was upsetting Casey, but she yelled once. I went to her to try and calm her before she lost control and seemed to be making progress – until I saw her eyes change and another yell came out.

At the same time, I saw a reflection behind me. Want to guess who was standing in the hall laughing at Casey? Yep… Her sweet little brother. 🙂

I told him to leave her alone and go watch TV. Rob pointed at her and said, “No fits, Casey!” as he turned away, giggling. She was furious! I stepped in front of her and started talking about different things we would be doing this week and she calmed down.

Until we went to the living room and Rob started in on her again. “No fits. That’s bad. No yelling.” And he was laughing. I finally had to send him to his room with his iPad so I could calm her down.

Don’t believe for a minute she never picks at him. Yesterday, it was his turn to pick the CD in the car. He did and I asked Casey to put it in. Instead, she picked what she wanted. When it started playing, he went on repeat “mix! Mix! Mix!” While she looked straight ahead with a big smile on her face. (I changed it to his, but she kept turning around and grinning at him).

While they do pick at each other, they are also fiercely loyal and watch out for each other. Casey will tell me if someone is mean to Rob and Rob holds her hand when we are in crowds. (Neither of them like crowds, but she wants to hold onto someone so she feels safer).

When he can’t find her, he asks where she is. If she gets home first, she asks for him (though, often, she doesn’t think about him until her color by number pages are done! 🙂) But, that’s siblings for you!

I’ll admit, it’s frustrating to me when they pick at each other, but at the same time, I’m proud of them. They are siblings first – autism is secondary to that and it shows!

Autism doesn’t define them and you shouldn’t let it define your child, either. Autism is just part of who they are, like their hair or eye color. Your child with autism needs the same rules as your typical children.

Enjoy the sibling squabbles. Be happy they are aware enough of each other to argue like siblings always do.

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The Difficult Dance of Parenting Autism and Typical Children

The Difficult Dance of Parenting Autism and Typical Children

Being a parent isn’t easy. Besides the typical day to day care, you are also responsible for helping your children grow into loving, kind, responsible adults. And when you add autism into the mix, it becomes a dance of never letting the typical sibling feel like their sibling with autism is more important than they are.

I’ve heard so many horror stories of the typical sibling ending their relationship with their parents so they can avoid being around the special needs sibling. Or, in the case of one family I know, they ask their elderly mom to move closer to them – but only if she puts their special needs brother in a home and not go visit him. I simply can’t imagine that kind of pain.

While Mandy is quick to say that she never felt resentful of Casey and Rob (except for when they took equine therapy – she was obsessed with horses and wanted to ride, too! Thankfully, the stable allowed her to ride at the end of the sessions, but I never felt like it was enough), I remember times that she was mad at them and for good reason.

Rob cut apart a necklace that was very special to her. Casey chewed the feet off of all of their Barbies. Rob chewed the horns off of her unicorns. Casey (the girls shared a room) wasn’t as interested as Mandy was in having a clean room. Rob did this – Casey did that. And every time, my heart broke for Mandy. All I could do was tell her they didn’t understand. In the case of the necklace, I was exhausted, stressed – and I didn’t handle it well at all. Mandy was furious – I simply couldn’t handle it…. and I told her she shouldn’t have left it where he could get it. Knowing even as I said the words, she didn’t leave it lying around. Knowing I wasn’t handling the situation right at all. And knowing I would be crying ugly tears that night in bed. I was failing her.

That being said, Mandy was also the first to defend Casey and Rob. And when she lost her temper, she was a force to be reckoned with. She might have inherited my temper – seeing someone treated unjustly still brings out that side of her. And I’m proud of that. I got a call when she was in 6th grade. A brown=nosing classmate told the teacher Mandy was mean to her. The teacher, assuming Mandy would never tell me she had gotten in trouble, called me. Mandy told me right away what had happened – and it was nothing like the teacher had been told.

The teacher felt I should take Mandy for counseling and possible medication for her “anger issues.” I’m sure after our conversation, that woman thought I needed the same, but I let her have it. Mandy admitted she did call the other girl a name – but only after the classmate made fun of another girl in their class. I also got a call from the high school once. Mandy happened to overhear a boy calling Casey a name – and again, she let him have it. She was called a bully – the boy was ignored. I told Mandy I would always stand behind her. If she got suspended for standing up for Casey or Rob or another student, we would go shopping and have a fun few days.

But – it was hard. For most of Mandy’s special events, many times, only one parent could be there. When possible, I left Casey and Rob with my parents or Tracie so we could both be there for Mandy. I hated missing things and was so worried she would start to resent autism. She denies thinking this – it’s just my mom guilt talking.

I tried to remember all of the ways my parents made my brother and I feel special and did them with Mandy. There were times I told her she looked “sick” and I called her off school, sent Casey and Rob and we went shopping. They were sent to bed earlier and we stayed up watching movies. We played games. Anything I could think of that would be special memories to her. It wasn’t easy and still feel the guilt of sitting at the top of the stairs playing horses or Barbies with her so I could still hear what was going on downstairs. I hated being torn and not being able to completely focus on her. She says she doesn’t remember it that way – and I thank God for that.

I know you are exhausted from the 24/7 care for your child with autism. But, please, find little ways to let your other children know they are just as special. Put notes in their lunch box. Text them. Play games. Skip school. Put everyone else to bed early. There are a million little ways to let them know that you are always thinking about them. Take turns with their other parents doing something special. Or ask a grandparent to stay with your child with autism. (Yes, I know finding someone you trust to stay with your child with autism is hard – sometimes, impossible – but it’s so important!)

At our autism support meeting last week, it was suggested that at our next meeting, we talk about how to help typical siblings understand their sibling – how to parent both. Mandy spoke up and said she hadn’t felt any less important or special than Casey or Rob – that she didn’t resent them at all. I’ll admit – I had tears in my eyes. I don’t know how I did it, but somehow, I got lucky enough that she grew up feeling important, cherished and loved.

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Siblings with Autism are Still Typical Siblings

Autism Siblings are Still Typical Siblings

When thinking about people with autism, I wish more people would understand that they are people first – the autism is just a characteristic of them, like their hair or eye color. Casey and Rob may not interact with each other as much as other siblings, but they do try to annoy each other at times. And Mandy joins in the fun!

Yesterday is a prime example. Casey and Rob were waiting in the car with Mandy when a friend gave them a bag of popcorn. Tory handed the bag to Casey because that was the side of the car she was near. Rob immediately tried to get it, as he loves popcorn and Casey won’t eat it. She snatched it away from him and held it until we got home so he couldn’t get any. Then she threw it on the table and never mentioned it again while Rob had a snack.

Later that evening, Casey was outside on the swing when Rob wandered out. This is really unlike him, as if he goes out, he usually sits on the front porch. Anyway, as soon as he sat down near her, she jumped up and ran in the house. He didn’t seem to care and enjoyed the swing for a few minutes. Soon, he went back inside and she came back out. It wasn’t long before he came back out and she left again.

He sat out there quite a while with me and then asked about Casey. We discovered she was in his usual spot on the front porch. 🙂 As soon as she saw us, she ran around to the back of the house to her usual spot in the swing. I was laughing at them both. It was so obvious that she had had enough of her little brother for the day!

Other days, she will lay her iPad down and leave the room. He will grab it and push the home button, so whatever she was looking at is gone. And she likes to barely push his bedroom door open knowing that he will jump up to make sure it is closed tightly. She likes to put her PJs in a certain place in the bathroom and he will move them to another spot. She will put a coat on, knowing he will do whatever she does, and then will take it off after he goes outside so he has to run back in the house to put his coat away, too.

Today has been much the same about going outside. He goes out, she comes in. I have no idea how many times this has happened today. I’m beginning to think he is doing it on purpose just to bug her.

Mandy will join in the teasing, too, and Rob will follow along with whatever she says. Casey doesn’t always join in, but she laughs when Mandy teases Rob. (He is always smiling, too!)

On the flip side, all of them, including Cory, are very close. Mandy and Cory are very protective of Casey and Rob and will do anything to make sure they are happy and safe. As much as Rob and Casey tease each other, they are also very protective. When we are out in crowds, they reach for each other and hold hands. It comforts both of them and is the most amazing thing to see. She knows he will get her where they need to go. And he knows she needs that comfort in crowds. Just like typical siblings, they look out for each other.

He follows her lead in many things. And she keeps an eye on him, when she thinks about it. 🙂 He will always ask where she is, but Casey may forget about him at times. When they are picked up from Hopewell, Rob usually asks where she is if he gets to the front first. She will just stand and assume he will come. 🙂

Honestly, it’s wonderful to me when they “pick” at each other. It’s something that siblings do – autism or typical. I love to see them interacting with each other. Though, maybe not in the way they just did. They were eating supper and Rob took the pepper shaker. He doesn’t use it and was grinning a huge grin as he held it above his head and watched her try to get it from him. (He’s so much taller, she had little chance of reaching it!) He finally got tired of the game and gave it to her, but she was not pleased with him at all. 🙂 But – that’s something that Jeff, my brother, and I would have done to each other. (And still do! 🙂 )

So please, when thinking about siblings, leave the autism out. Watch how they interact together. Even without words, they will form a relationship. It may not look like the relationship between you and your siblings, but it will be there. The love and the laughs – on their terms. Enjoy every minute of it!

And remember, if you mess with a person with autism, their siblings will come to their defense and it will not be pretty. Beware.

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Leaning on Each Other – Siblings with Autism

Leaning on Each Other - Siblings with Autism

Most people assume that since Casey and Rob won’t talk very much that they ignore each other, too. And sometimes, that’s true – what siblings pay attention to each other all the time? But they don’t ignore each other. Autism doesn’t define their relationship with each other or others. Their personality does.

Last week, Tracie and I took them hiking at a state park near us. Casey and Rob were so excited to finally be hiking with Tracie and couldn’t wait to get there. As soon as we got out of the car, Rob took the lead and Casey followed. Every time we came to a different path, he took the lead and she followed him. She completely trusts that he will find his way back to the car. The funny thing is she rarely turns to see if Tracie or I am following them.

As we were walking, we came to a huge tree that had come down over the path. Rob sat on it and swung his legs over. When he was on the other side, he stopped to wait for Casey, who for some reason, couldn’t figure out how to get over the tree! We had to help her and they both started walking on the trail before they made sure Tracie and I got over it! They both trust that we will never leave them alone and we will eventually catch up.

It’s funny. They lean on each other in different situations. Rob looks to Casey for whether to wear a coat or boots – she knows he will find the car no matter where we are. He watches her in restaurants – she follows him in crowds, usually holding hands. If they are some place that isn’t familiar to either of them, they stick together and stay close to someone they trust. The trails we were on last week were completely unfamiliar to all of us, but Rob took off. He is confident in the woods. (I don’t know what he would do if he didn’t have a trail to follow and I hope I never find out!)

She feels safe if she is following him. I find it so amazing that, despite their autism, they lean on each other just like typical siblings do. They understand the talents that each of them have and trust those talents to keep them safe. Again, I’m not sure what either of them would do if they found themselves in an unfamiliar place with strangers. That thought is enough to keep me awake at night and to say a prayer that never happens.

When Rob knows he is going somewhere different, he asks for Mandy or Casey. He doesn’t like to go strange places without one of them. It seems if he can go on an outing with their day hab, he will only go if Casey is going or a staff member that he trusts. If not, he will choose to stay at the hab center.

Casey will go anywhere with anyone (and this scares me to death! Of the two, I think she is more likely to walk off with a stranger) and she loves new places. This is where their personalities define them. He is more cautious about people – he pays more attention to them. She ignores most people. She doesn’t care what others think while he worries constantly about that.

His anxiety causes problems for him, while her need for structure can get her upset. This is just them – it isn’t because of autism. Maybe she shares her love of schedules with Mandy. Maybe Rob is a leader at times because he is like me. Many of their “quirks” can be seen in other family members. Not everything in their lives is autism and I wish more people understood that.

They lean on each other, and Mandy and Cory, because that’s what siblings do. It isn’t their autism – it’s the love they have for each other. They know the strengths that the other has and use those strengths. They understand when the other is nervous or scared and try to help. Casey is especially worried when Rob is sick or hurt. She has to constantly check on him and will put band aids on him whether he wants them or not. (even if he doesn’t, he lets her do it, then takes it off when she isn’t looking.)

I wish that every family had siblings that leaned on each other like they do. I don’t know what I would do without my brother to lean on and I’m sure Mandy feels the same about Casey and Rob. Theirs may not be the usual relationship, but that doesn’t make it any less special. I know it’s hard for siblings when one has special needs. I know many families get torn apart by it. My hope is that if that does happen, eventually, the relationship can be repaired. Sadly, some people just cannot handle being different and the stress that comes with that.

Casey is more head-strong than Rob. I just asked her why she follows Rob in the woods. Her reply? “Bigger.” 🙂 Yep – he is bigger. Maybe she thinks he can save her from animals. Maybe she knows he will break branches that might hit her. Maybe she knows that he will find the fastest way back to the car so they can have a snack. 🙂 Either way, she trusts that he will take care of her.

I just love watching their relationship as it grows. As a mom, watching my kids enjoy, support and love each other is the best thing I could ask for. Don’t give up if your children aren’t to this point, yet. They have plenty of time to learn to trust and have fun together!

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Autism and the Questions I Never Asked

First, I have to say, the above picture is one of my absolute favorites of the three kids together. It has been hanging in my kitchen or dining room since it was taken – 14 years ago! I realize you can’t see the kids’ faces, but I just love that they are walking hand in hand and completely in step with each other on a beach that they love going to. Autism isn’t obvious, unless you know the kids.

That really is a snapshot of how they grew up. Mandy was in the middle and guiding Casey and Rob towards fun and safety. She never seemed to notice how different they were from her friends’ siblings or that her life was very different in ways, because of autism. The kids weren’t always in such perfect step together, but they were always together.

I am always bragging to people at how amazing Mandy and Cory are to Casey and Rob. There are so many siblings that simply have nothing to do with the person with autism and I thank God every day that my kids are close. I just can’t imagine the pain a parent would feel knowing that autism kept the family from being close. Mandy will say how great her childhood was and, in many ways, I think it was. But – there are questions I never asked her, because I am not sure I want to hear the answers.

Like – did she ever notice that we didn’t go many places as a whole family? Did it bother her that many times, she only had one parent at her school events? (yes, I know many children have only one parent at events, but I’m thinking just of her. 🙂 )

Did she ever notice that so often when we played Barbies or horses or Power Rangers that I never got too far away from the top of the stairs so I could hear what was going on downstairs? Did she notice that I was distracted as we played some days?

Did she feel left out when Casey and Rob went to therapies? I know she didn’t like that they had horse therapy, at first, because she so loved horses and she wanted to ride, too. When she got a little older, she volunteered with the riding club, but I still regret that she didn’t get to ride when she was the one who loved horses so much.

Did she get tired of sharing a room with a sister who had meltdowns often? or who couldn’t sleep many nights?

I know there were times she was furious with Casey and Rob. There were times they took something precious to her and broke it or just got on her nerves. But did she resent the way I handled those situations? I could tell Casey and Rob not to touch things that weren’t theirs, but in reality, their impulsiveness overrode any words I could say. I never felt I handled those times right – I tried, but I don’t think she truly understood that I knew how upset she was – there was just little I could do, except cry and hope that she didn’t grow up to hate her brother and sister.

Did she notice how many times Casey and Rob’s needs had to come before hers? When they were little, I hoped every day that she would never feel like she wasn’t just as important as the other kids, but it was (and still is, at times) a worry I can’t shake.

Did she have plenty of time to just be a kid? And not have to help keep an eye on Casey and Rob as we played outside or ventured to a store? Did she have enough freedom to just be her – Mandy – and not their sister?

Did I make sure they all followed the same rules? I hope so – I tried – but I wonder, at times, if I was more lenient on Rob, because he was the baby, not so much because he had autism. I suppose that’s something every parent worries about, but when there is a special needs sibling or two tossed in, it’s even harder.

It seemed some days that my entire day was dealing with autism in one way or another. Those nights, I would fall into bed and feel so guilty that Mandy didn’t get the few minutes of attention I wanted to give her. (Autism mom/dad guilt just sucks, doesn’t it?) I hated that I couldn’t spend the whole afternoon playing games with her without constant interruptions from autism.

Did she resent it when I asked her to watch the movie Casey or Rob chose, even though it was her turn? It didn’t happen often, but some nights, I just couldn’t deal with the thought of another meltdown from Casey because her movie wasn’t on when she got out of the bath. Luckily, Mandy and Rob tended to be obsessed with the same movies (except Willy Wonka – she never got into that one like he did!) – like Wizard of Oz and the Power Rangers – at the same time. And even luckier, Rob did whatever Mandy wanted so he was happy with anything she chose.

Did she get tired of our routines? Or did she like that she always knew what was going to happen?

I know every parent has questions like this, whether there are special needs family members or not. This is just something I’ve been thinking about the last few days – I’m not sure why – maybe because I was looking at pictures from when they were younger and thinking about how many times Mandy had to jump in and help with Rob when Casey was having a meltdown. Or look for Rob when he climbed somewhere and we couldn’t find him. And those thoughts led to the questions.

Casey, Mandy, Cory and Rob are close now. While Casey loves Mandy and Cory, Rob takes that love to an adoration. He is still the same little boy who would follow his sister wherever she wanted to go (and I have pictures to prove it!) and now he follows Cory that same way. Now, I know she doesn’t resent her siblings, but when they were little? I’m sure there were times she hated autism – same as I did. I am sure she never hated Casey or Rob – just the actions that were caused by the autism.

I wish that every person with autism had a Mandy and a Cory in their lives – that every family could be as close as ours. Despite my guilt at not always being the mom I wanted to be for Mandy, I know how lucky we are to have each other.

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Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

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Autism and Celebrating Another Birthday

Autism and Birthdays

It’s hard for me to believe that tomorrow, my “baby” will be 25!   Unlike Casey, Rob doesn’t seem to care about his birthday.  When asked what he wants, his answer is always “presents.”  Trying to ask for specific things, all the while trying to use a statement (tell me what you want) instead of a question is difficult for both of us.  But, that doesn’t matter because it will his day and I’ll do everything I can to make sure he knows how special he is.

When I think back to when the kids were little, it’s amazing to me just how different they were.  It seems I should have seen the autism in Rob earlier.  I was concerned and even talked to Casey’s neurologist and our family doctor about him.  They both agreed with his history, I needed to wait before I panicked.

For the first three years of his life, Rob managed to end up in the ER every six months or so.  As soon as I would get a bill paid off, he would end up there again.  He tumbled as a toddler and split his forehead open – stitches.  He had pneumonia. He fell down the basement steps and got to ride on a helicopter to a children’s hospital (he wouldn’t wake up).  He had a seizure after getting a set of vaccinations.  He jumped down the steps and broke his collar bone.  Need I go on?   I often said that had he been first, there wouldn’t have been another.

So, when he didn’t talk much, no one was very concerned.  He didn’t have routines that he needed to follow.  He didn’t have sensory issues when he was a toddler.  However, since he was language delayed, our school district put him in their preschool when he was 3.  It was the same one both girls had gone to and he was so proud to be there.  He played beside other kids, but rarely played with them.

But, he followed Mandy everywhere at home.  She would tell me what he wanted, so he never needed to use his voice.  She was the ultimate big sister to him and he still leans on her.  The years she was in Texas were especially hard on him.  Casey knew Mandy would come home and would watch the calendar for those dates.  He just knew she was gone.

Since he didn’t show many signs of autism, we waited.  He was going to preschool and getting speech.  There wasn’t much I would have done differently had he had a diagnosis.  When it was time for Kindergarten, though, the signs were becoming more obvious.  He went to our county board of DD Kindergarten and had a one on one aide that he adored.  I also made an appointment with the neurologist for him.  It didn’t take the doctor long to agree that he had autism, too.

I wasn’t surprised.  I didn’t feel much of anything, really.  It was what it was and a diagnosis didn’t change any of us.   It wasn’t till a few days later when Casey had one of her hours long meltdowns that it occurred to me he may start doing that, too.  And I cried.  I wasn’t strong enough to handle two screaming, kicking kids.

God was watching over me.  While Rob does have his issues, meltdowns have never been one of them.  He rarely gets angry and when he does, he tends to cry (like his mom!).   Rob was happy to go to school with Casey and his teachers were awesome with him.  His aide, Beth, went with him and stayed with him through elementary school.  He still talks about “My Beth” – that’s what he always called her.

Sensory issues were Rob’s biggest obstacle.  He hated most shirts, but jeans and tennis shoes were no problem.  He wore a hat everywhere he went.  He had hunter ear protection that he wore through his school day to add pressure to his head and block unexpected loud noises.  He had a huge platform swing in his classroom that he used all of the time.  Beth discovered while he was laying in his swing, he could spell and read and recite math facts much easier.

When he became stressed, he squeezed his jaw or flapped at his ears.  He still does the flapping, but now it’s by his jaw and it doesn’t happen often.  In some ways, his sensory issues have gotten better.  He is willing to try new foods, new places and new clothes, for short periods of times.  In others, it’s become harder for him.  Crowds bother him more.  Being hot is extremely uncomfortable.

Rob is a grown man now, but that little boy is still inside him.  He still loves Dr. Seuss and his Power Rangers.  Willy Wonka and The Wizard of Oz will always stop him in his tracks.  He still builds trees and power poles with his Legos.  “Where did Robbie go?” will always get a smile and giggle from him.  He is still Mom’s boy and still leans on Mandy.

He doesn’t like to get dirty like he used to.  He hates anything gooey on his hands.  He doesn’t like to wear jeans (though part of that is trying to find a pair that fits well!) and doesn’t always have a hat on.  His interests are not those of a grownup, but he is a happy guy.

To him, the best part of his birthday will be that Grandma Rose and Grandpa Mack, Mandy and Cory will be here and we will have Long John Silver’s for supper.  He’ll grin as we sing to him and blow out his candles.  He’ll open presents and say thank you.  And then he’ll be done with being the center of attention and disappear into his room.

I know many of your reading this have little ones.  I know you have days when you wonder how you can keep going because you are so darn tired.  I had those days and I can tell you, it does get easier.  It may not be a perfect life, but no one has that.  You will always have hard times, but you are strong enough to handle it.

I didn’t always believe in myself, but we are making it, day  by day.  I can sit and remember how far the kids have come and some day, you will do that same.  Your journey won’t look like ours at all, but it will still be a good one.  The ups and downs average out – even when the downs seem to never end.  Always believe in yourself and your child.

As for me, I’m going to go wrap Rob’s presents and hope he likes them.  I’m going to look at his scrapbook and know that little boy is still around – as cute and as ornery as ever.  I’ll be grateful he doesn’t climb to the roof and jump anymore and that he finally seems to have a small awareness of danger.  Some day, you will look back and be proud your child has come just as far.

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Autism and Siblings

Autism and Siblings

Autism and siblings can make for difficult family moments. When I wrote last week about turning into a “Mama Bear” I didn’t mention that, in our family, there is also a “Sister Bear.”  Sister Bear can be even more protective of Casey and Rob than me!  This fierce protectiveness helps relieve the Mom Guilt I’ve often felt because I always worried Mandy would somehow feel she wasn’t just as important and special as the other kids.

I had read so many stories of siblings of people with special needs who resented their family because the special needs child seemed to “get everything” and they felt left out.  I was determined Mandy would never feel that way, but I’m sure she did.  After all, even in “typical” families, siblings feel left out at times.

I’m not sure how old Mandy was when she realized that Casey and Rob were not like everyone else’s siblings – or if she even cared when she did.  She has always accepted and loved them as they are.  If anything, she expected them to be more what she wanted and could find ways to engage Casey in play, if only for a few minutes.  Rob was usually willing to do whatever Mandy wanted – and still is!

Our school district has 4 elementary schools and special needs students are in 2 of them.  This meant that Casey and Rob went to one school while Mandy went to another.  While I wasn’t crazy about the idea at first, I think it helped Mandy by letting her be herself and not just the sister with “odd” siblings.  She was a freshman in high school before she was in the same school as Casey.

To be honest, I didn’t think much about them being in different schools at the time, but now, I think it was a great thing for Mandy.  She needed a break from autism, even if she was too little to understand what that meant.  We all need that break, especially siblings.

Think of how difficult it is for you to hear something negative about your child with autism.  Can you imagine how hard it is for a sibling?   Especially if that sibling is young and hasn’t learned the hard truth that people aren’t always nice to others.  Mandy’s closest friends knew about Casey and Rob, but they accepted them and my kids joined in their play often.

There were difficult times for Mandy.  Items that were special to her were destroyed and couldn’t be replaced.  She was rightfully angry and I felt terrible that she was hurting because of autism.  I tried to help her understand that Casey and Rob didn’t mean to hurt her, but how could I help her when I felt the same frustrations at times?

I felt guilty when she wanted me to play with her horses or her Barbies and I had to sit at the top of the stairs so I could hear what Casey and Rob might be doing.  I felt like she only had half my attention when she deserved it all.  There is no stronger “Mom guilt” than feeling as if you can’t give your child your full attention.

When Mandy had special events, I made sure to make arrangements for Casey and Rob so I could be at them without being distracted.  It’s impossible for parents to be at every event for their child, but it is so important that you try – and that when you are there, that child has your full attention.  Remember – you have to celebrate every child’s achievements!  It’s easy to get so wrapped up in autism that a “typical” child’s accomplishments don’t seem that special.  Never let that happen!

Make time for special days with each of your typical children.  Every child needs one on one time with you.  You may need to be creative to find that time, but it can be done.  Once in a while, I sent Casey and Rob to school and took Mandy shopping and out for lunch.  Or I might let Mandy stay up late and we watched a movie after the kids went to sleep.  It didn’t matter what we did – only that it was just the two of us and she had my full attention.

I can’t imagine how hard it is for kids to have siblings with autism.  It seems they grow up much faster than their peers.  I can’t count the number of times Mandy took Rob to her room while I tried to calm Casey down.  Or the number of times Mandy gave me a hug as I cried because I was just so tired.  Or how I often I had to say to her we couldn’t do something because the other kids wouldn’t like it.  She seemed to take it all in stride, even as I was wondering if she would start acting out to get attention, too.

She defended (and continues to do so) Casey and Rob against anyone she felt was being unfair to them.  In high school, she overheard a boy call Casey a name and she went off on him.  She could barely tell me about it through her tears later.  I had a hard time comforting her when I wanted to find that kid and smack him, but she eventually calmed down.  She just couldn’t understand why anyone would be so mean because someone was different than them.  She still doesn’t.

Siblings of people with autism are often the most compassionate, strong, kind people you will ever meet.  They have lived a life most people cannot and will not ever understand.  They laugh at the silly fights other siblings have and they are typically very close.  They grow up knowing that it’s useless to get upset over little things and have a fierce independence.

You will make mistakes – we all do.  Forgive yourself and move on.  You will be too tired to play with your kids.  You will have to say no to some things.  You will have days that you feel like you are failing all of your kids.  But – those days are few and a new day always comes.  Do what you can, whether it’s spending a day with your child or cuddling on the couch.

I pray the same prayer other parents of children with autism pray – that Mandy has always known she is as awesome as Casey and Rob and that I love them all to the moon and back.