Broken Wings Part 5: What I Wish My Spouse Knew

What I Wish My Spouse Knew About Our Child With Special Needs

This series was inspired by a Facebook post I read six weeks ago. A member posted this question “Does having a special needs child affect your marriage?” Post after post, people shared examples of how their marriage was tested. Some made it, others did not. I always wanted to create a platform where people could talk and share their experiences, the good and the bad. I cannot thank my collaborator Wrae Meredith Sanders enough for her open and honest contributions. Whatever your decision is, I hope you know you’re not alone and you will make it.

This is the last part of this series. Please feel free to like, comment, and share.

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There are many things that I can look back on now and wish that I could change. I’m unable to change the damage that was done to our marriage- both of us did things that we regret but we have been able to move forward together.

If I’d known that we would disagree so much and loudly, I would have shut the door a little more. I would have stopped and asked for a break–this would have helped more than we realized at the time. I would have asked why we had to be right all the time instead of coming up with a compromise.

Julian Needed Us to Come Together, Not Fall Apart

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If I’d known then that I’d spend many nights crying myself to sleep for so many reasons, I would hit the rewind button. I would figure out each separate reason instead of letting it all become a big ball of depression.

I thought I was doing the right thing–fighting you for Julian’s needs. This turned out to be two evaluations, a diagnosis of ADHD (combined), traits of Asperger’s (later amended to High Functioning Autism) and medications. He also needed group therapy.

Moms are supposed to do what it takes for their kids, right? The only thing is, I did it alone. I didn’t listen to you. You didn’t want any of these things to happen because you were in denial. If I had known what to say and not be confrontational, I would have done it. But I didn’t. That’s where I went wrong.

I tried explaining, even in a way you could understand but that didn’t do it. In your family, disabilities aren’t real unless you see it. Julian has the kind you can’t see. You couldn’t see it, so it didn’t exist. This even applied when Julian almost broke my nose and I had to get X-Rays.

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I sought out ways to deal with the loneliness. When your husband is in denial and emotionally bashes you daily, you have to find a way to cope. I drank. That was not productive at all.

I went out a lot with people who turned out to not be good for me, you even tried to tell me, but I didn’t trust you enough to care. I worked out in the gym obsessively and lost 60 lbs. Even my doctor was concerned. I barely ate for days on end. This didn’t help my decision making.

What I Know Now

We worked hard to put this family back together. I still have problems opening up to you this day. I finished therapy two months ago. You were there from day one to the last and cheered me on the whole time.

During that time, Julian has grown, and he has done well. He finished group therapy and dealt well with a change in providers. He is going into the seventh grade after a few bumps adjusting to middle school.

You’ve become so supportive of Julian and I. When he has a bad day, I know I can tell you about it. You’re happy when he does well. Raising kids isn’t easy and we have three. Having a kid with special needs makes things a bit more interesting and sometimes difficult. I’m glad that both of us decided to make this work.

Thanks. I know Julian wouldn’t say it but I’m sure he likes his mom and dad being together.

Love always…

Wrae

What I Wish My Husband Knew About Being A Special Needs Mom

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Dear Husband,

Never at the age of forty did I dream I would marry, then become pregnant a few months later. It took us both by surprise yet we agreed to go on this wild journey called parenting. I had a little more experience with raising a child as my daughter was fourteen when we tied the knot.

I was fat, tired, and cranky–everything a pregnant woman is and probably will be as long as little humans continue to beautifully invade our personal space. There were precautions because of my age and health, but I was sure I would go full term.

But I didn’t. He came nearly three months early. After a long stay at the hospitals, oxygen tanks, and therapy, our baby boy could live a normal life.

There’s Something About Keith

We both noticed how energetic he was, how once he started talking he couldn’t stop, and how sleep evaded him. No worries though, I sleep trained him. Plus, kids are naturally talkative and hyper, right?

But he never slowed down. After being kicked out of two daycares, we had him evaluated. I already knew, but I wanted to hear the doctor say it. He had ADHD.

Now here’s where the story starts to fall apart

I ran straight towards the ADHD armed with books, natural medicine because our pediatrician refused to help him, and age-appropriate behavioral techniques. You ran in the other direction, straight to the door of denial.

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Days grew into weeks, months, and even years. Six years isn’t much time to some, but when a person feels like they’re carrying the load alone, it can seem like a millennium.

The feeling is familiar because I went through the same thing raising my daughter alone. I felt overwhelmed all the time. I feel that way now.

As the primary caregiver, I stay on top of his meds, homeschool him, and take him to the doctor’s appointments.

I know you can argue that since I don’t have a nine to five, I should be doing this anyway. I remember carrying the same load as a full-time working mom too.

And when you did participate…

Yes, you went to the doctor with us sometimes. You ‘yessed’ your way through the appointments, but the heavy part of the load rests on my shoulders.

When he’s having a bad day, I try to redirect. You punish him by sending him to bed.

If he talks back, I remind him that his behavior is inappropriate, you yell at him and say things he will repeat later when he’s frustrated.

Even when you excuse yourself from spending time with him, he loves you anyway.

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If I thought you would really listen to what I have to say, I’d tell you that you are creating an insecure man who will be afraid to share his feelings, think he isn’t good enough and may do inappropriate things to get attention.

But I’m not brave enough. What I am is strong. I’m strong enough to walk away and do it on my own.

I don’t want to, but his well being comes first. The only reason I haven’t walked away now is that much like a little girl, I have hope.

You’re not a bad person. That’s why I haven’t left yet.

Until then, I pray we can fix these broken wings.

Love,

Bonnie

Comments? Leave them below.

Thank you so much for reading this series! We appreciate your support during this month. If you missed any of the previous parts, you can catch up here:

Part 1 Part 2 Part 3 Part 4

Brilliant blog posts on HonestMum.com

A Parent’s Guide for Wandering and Missing Children

One of Many Nightmares

Wandering is a huge worry for many parents, especially for those of us that have autistic kids. I used to work with kids that wandered or, as it was known at the facility, “eloped”. It was scary to chase a kid down the halls or even outside, because you never know what they might be going after or why they’re running. Great exercise, though. It is also on my list of worries about Julian. He used to run off in parking lots among other places, and was extremely fast. He is still fast but no longer runs off. At almost 12, this is a good thing. I’m not as fast as I was when he was 5, and I’m not sure I can chase him anymore. The peak age is 5 and mainly depends on the severity of autism.

According to the National Autism Association, almost half of autistic kids have engaged in wandering behavior. You can find their website here. That can be a scary number, because most know the 1 in 68 kids statistic. The dangers in this are: encounters with strangers, physical injuries, hypothermia, heat stroke, drowning, etc. This website has a free booklet that can be downloaded that contain tips for safety. (I got it, and it has a lot of helpful information.)

Why Do They Wander?

Kids wander for a variety of reasons. When autism is involved, it’s a bit different.

  1. An undeveloped sense of danger. At my house, this is a top reason for a lot of things, and the main reason why Julian darted through parking lots. I cannot count the times I grabbed his small hands so hard I left marks. It’s harder than most people think to contain a small kid. He still lives what he calls “the dangerous life”. When your kid has autism and ADHD, you pretty much pray for the best.
  2. Boundary confusion. Literal minds don’t always understand instructions, and boundaries aren’t always visually clear. Autistic kids can’t always see the boundaries that they are told to keep. The park can be seen as a big patch of grass, and the beach can be a huge puddle.
  3. Communication issues. Non-verbal or limited verbal kids can’t tell you that the lights are too bright, the room is too noisy or if something else is wrong. They can, however, walk out of the room. They just want to get away.
  4. Special interests. If a kid sees a train, they might want to see it up close. They might even walk out of the house to see it without letting anyone know.

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Tips for Wandering

There are ways to help prevent wandering, but most of all: KNOW YOUR KID. If you know your kid and their triggers, this can help you follow the other tips. These tips, in part are from StagesLearning.com

  1. Understand the goal. What is your child’s goal in wandering? Maybe they just like to explore. This is great, but can be done in a safer way. Maybe they want to go to a certain place? This may take time, but can be very important.
  2. Figure out the triggers. Is your child trying to escape a situation? Is the area they are in too loud, too demanding (as in school)? Coping strategies can help.
  3. Tracking and security apps may help.
  4. Teaching safety- pictures, social stories, etc, may be very helpful. Some kids may wander may not be able to communicate in order to get back home. This is a fear with Julian. He is fully verbal but yet will not speak in some situations if he doesn’t know someone. He surprised me one day during a track meet when he got lost. A teacher from another school found him and he gave her my phone number so she could call me, and we were reunited. I was very proud of him.
  5. If wandering at school is an issue, speak to teachers, administrators and anyone else needed about school security to ensure your child’s safety.
  6. Swimming classes may be necessary if you are concerned about your child’s proximity to a pool, creek, pond, river, etc. This can be a life or death situation.

This site Snagglebox has some great tips on preventing wandering. Please look if you need tips or if you know someone that does.

If Your Child Goes Missing

I hope nobody ever has to use these tips. I hope I never do. It is one of my biggest nightmares.

The first step, of course, is to look all over your home. Ask neighbors, nearby family members, etc., if they have seen your child. If not, look around your neighborhood. Have others help if possible.

  1. Call the police. They are required to enter your child into the FBI’s national database right away and send a BOLO (Be On the Look Out) to surrounding areas.
  2. Be ready to give law enforcement your child’s description and picture. – height, weight, hair and eye color. Do they have glasses, other identifying information? Medications? Medical conditions? Date of birth? Other information will be asked for.
  3. Make yourself available, including your phone.
  4. Inform the National Center for Missing and Exploited Children (NCMEC) by calling their toll free number 1-800-THE-LOST

Most missing child cases are resolved within hours, according to Safewise

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I listen to a lot of true crime podcasts, and according to my kids, it makes me worry too much about them being kidnapped. They have NO idea. Most of the episodes I hear are about missing kids. Stay safe!

Resources:

Safewise

Missing Kids – includes downloadables for safety info

National Autism Association

Twin Mummy and Daddy

Brilliant blog posts on HonestMum.com

My series with Bonnie is in week three! Broken Wings Part 3: What Your Child Thinks About Your Divorce

If you have missed the first two parts you can catch up: Part 1 Part 2

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The Cell Phone Questions

Teenagers require a lot of thought. I’m on my first one and I don’t quite know how everything works with them. One big topic has been technology. So far, Cameron has his own email and a tablet but that’s it. Some of his emails have been hilarious. He once emailed me complaining about bread and I laughed until I cried.

He’s been screeching (not really, just asking) about getting a cell phone.
Ha. This kid can’t keep his room clean and/or remember all of his homework, and he wants a phone?

This is where the debate lies.

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Mom and Dad’s Debate

Keep in mind, Cameron turned 13 not even a month ago. I have to bug him to take the trash out and clean his room. Those are his main chores. His grades aren’t the best, mainly because he goofs off.
I give Cameron many points for being helpful and respectful. But a phone, though? I’m not sure he can handle it and not use it to further goof off, which is a real possibility. (There are ways around this *evil mom grin*). There are way too many people out there that try to do bad things with kids on phones, but there are apps to try to deter that. A little more responsibility probably would be good for him.

Piggy bank

The finances of this is another question. Matthew and I aren’t on a plan together- he is with his family and I am with mine. This has been a longtime setup. Cameron could do just fine with a super cheap, pay as you go plan. I’m not interested in a contract for a teen. I’ve peeked at some online and the results weren’t too bad.

 

I’m not entirely sure of the student cell phone policy at his school. I skipped reading it because neither of my sons has a phone. I have plenty to read at the beginning of the school year, and that didn’t make the cut. I can find it on the school’s website and move along. If possible, I want him to have it in case of emergency.

The Sibling Factor

Then there’s the sibling factor..when one kid gets something, they all freaking want it. I can already hear Julian in the background yelling about getting a phone as soon as Cameron lays a finger on his. As of now, Lily doesn’t care.

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Y’all.. cell phones for three kids is a bit much. Monitoring all that is going to be a beast. I’m not going to become a private investigator, but I need to know the kids aren’t getting into any deep issues. It’s 2018- there’s sexting, Snapchat has that map thing, and then there’s cyberbullying. I hope I’ve taught my kids to be decent people and not be bullies. I also hope they’re never bullied.

Clearly, the jury is still out.

Cameron will just have to wait.

Momming isn’t easy.

Update: Cameron just turned 14 as of 1/7/19 and he is getting a cell phone. It is the only thing he wanted so we decided to give it a try. 🙂

Parents of kids with cell phones- is there anything I haven’t thought about? How did you decide to get a phone for your child? Help a mom out!

The Siblings’ Turn 

It’s well known that siblings of special needs kids have it hard. They miss out on time with Mom and Dad, things they want to do, etc. Some siblings do well with this and some don’t.

Siblings Are Lifelong Friends.. Right?

My sons have been close since day one. I’m not sure Cameron remembers anything without Julian because they are 18 months and 2 weeks apart. Over time, they’ve become each other’s best friends. Lily and Cameron can’t stand each other most of the time but Lily and Julian get along well most of the time. They are 18 months and one day apart. (This timing though…sigh)

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Messy house, kids…see a pattern?

They have watched Julian’s many meltdowns, missed out on many afternoons with me while I took him to therapy, patiently waited for dinner while I dealt with Julian. This list gets quite exhaustive. They haven’t always been perfect angels throughout the years with Julian, but I can proudly say they have gained a lot of patience.

Today’s post is for them. It’s an open letter to them for being loving, patient and most of all, accepting of their brother. Not all siblings are.

Cameron and Lily,

I know it’s not always easy having Julian around. He’s been in the spotlight a lot for a good chunk of your lives. He just needed a lot of my energy and brainpower.

That doesn’t mean I love either of you any less. Please don’t think this for one second. It would break me if you did. You two have silently watched as Julian threw toys, screamed and hit me. At one point, you were too afraid to play with him.

As things changed for the better, you realized he was getting himself into a different mindset and he wasn’t so mean. So aggressive. Now he’s goofy and a lot more fun to be around. Julian still has his quirks and gets on your nerves but the two of you have learned to accept them. I wouldn’t let you not accept him.

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He is your brother and lifelong friend. He may or may not always be able to defend himself and that is where you come in. Somewhere along the way, Cameron, you have helped Julian make friends. You have helped defend him when he needed it. Lily, this isn’t your arena, but caring about your brother deeply is. You know he doesn’t do hugs but you help make sure he’s okay. You give him space, play with him and just let him be.

Kids and dog

Julian is a lucky kid. All three of you are. You may not realize it now, but having a brother with special needs has made you more empathetic, caring and sensitive people. You’re more willing to help others. I’m sure you’ll see this one day.

Me? I’m a very lucky mom. I hit the jackpot on the day that each of you were born.

Love you. I’ll always have your back, everywhere you’ll ever look.

Mom