Adjusting to a New World

Many parents, myself included, envision parenting as this wonderful adventure in which kids develop at the pace they should, play instruments and/or sports, learn to drive, go to prom and all that great stuff.

But what happens when those things are altered because of a special needs diagnosis?

Cry a little

The Big Change

Some parents find out about their child’s diagnosis before or right after birth, in cases of Spinal Bifida, Cerebral Palsy and Down’s Syndrome. I know parents of kids with these diagnoses, and it has been life changing for these families. All of them have other kids without any special needs.

The adjustment is hard. I cried my way through Lily’s evaluation for First Steps the day before her first birthday, even though I knew something was not going right. I knew she needed more help than what I could give her. That story can be found in Special Needs Round Two . When her diagnosis of global delays was given, I was even more devastated. The blame game began. It took a lot of talking with Lily’s speech therapist, Denise, to realize that it wasn’t my fault that she was developmentally delayed. We are in the process of getting Lily re-evaluated. At ten, she is still showing signs of issues that we thought she had grown out of. Cross your fingers for us- we may need it.

In Julian’s case, it’s been a tougher road. His psychiatric nurse practitioner, Ann, once said that we have adjusted wonderfully as a family to Julian’s needs. I almost hugged her. I explained to her that it has not been easy and it remains a somewhat rugged path. My question is: Why not adjust? Julian is wired differently and that’s okay. If we didn’t adjust, he would feel badly about himself and I couldn’t bear the thought of this. It would also cause so much chaos for him that he doesn’t need or deserve. It would do the same for the rest of us. Why do that?

He needs the ability to feel okay about who he is, quirks and all. We’ve enjoyed watching him grow and finally develop a sense of humor. Every kid needs that, with or without a diagnosis. In a home with medical issues, this is a necessity.

I have made many mistakes in raising Julian (and his siblings). Even after reading up, trying many different things, therapy for both of us, getting Matthew on board and lots of burnt dinners in the process, things remain interesting. Julian is now 12 and puberty is kicking in.

Learning that your child has a medical and/or physical special needs diagnosis is complex. Some parents grieve the life they feel their child “should have had”. This is a rough one for me, as I’ve never done this. I can see this happening with kids with severe medical problems. A high school friend of mine has a child with spinal bifida and she lives a full life. Instead of being devastated and staying in a hole as some might, Shelly and her kids go out and do all kinds of neat things. Ryan is eight, and she is one of the coolest kids ever. She’s a tiny fighter. Some parents, like myself, are devastated and are not sure where to go next. Some fall into the “research pattern” and find all kinds of information to know exactly what to do.

This can be a great thing- I have read up a lot on Julian’s diagnoses and it didn’t hurt to work with kids with similar issues. (It did physically hurt some days, but that’s another story. I learned a lot from that job.) Some parents, sadly, go into denial. This can be damaging to everyone involved, and I highly recommend seeing a therapist, church member, or another trusted person. If it’s your partner, this can get really bad quickly, and I definitely know the pain of where it can go. Please do what you can to change that path. Talking can help. Easing your partner into information, appointments, and other things can help. Just don’t force them, because that can make things worse.

I recommend reading up, asking questions, and getting all the help from the medical community you can. The more information you have, the more empowered you feel to help your child. Julian’s been very lucky- he has had a great team from day one, because I wouldn’t let him have anything less. I’m a proud mama shark.

Never give up

It’s okay to feel different things- don’t let anyone make you feel different. Julian was diagnosed almost seven years ago, and some days I still feel overwhelmed. As of writing this post, I’m about to battle it out with his school over his IEP because it’s currently not being followed. Some days are better than others. Some days are absolutely great, some are so bad that you want to devour a liter of Cherry Coke, a bag of salt and vinegar chips and call it a day. (Okay, maybe that’s just me. I didn’t do all of that, but I considered it.) If you’re overwhelmed, write it out. Get someone to help you sort out your feelings.

Making The Best of Things

Daily life also changes. Depending on the diagnosis, your child may need assistance with everything, or nothing at all. This can become time-consuming and require an overhaul of your routine as you knew it. Food may need to be altered due to sensory issues- I live in a house with two kids with sensory issues, and I gave up on those battles years ago. Julian won’t eat french fries if he can see the potato skins or if they aren’t super warm. Lily won’t eat anything that resembles soup, any pasta that isn’t spaghetti, mainly because it looks different. Julian actually had a meltdown once over the shape of pasta my father in law used for dinner. These changes can be irritating to make, but they are necessary for the world our kids live in. I’ve learned to look inside Julian’s mind a bit, probably because of my work, and try to see the world as he does. It can get hard, but it’s worth it. Explaining this to others can get even harder, even your partner.

Small steps

It takes time to adjust- it won’t happen overnight. It takes time to learn how your child’s machines work, or how to get the wheelchair to fit in your van. Give yourself space to make those mistakes. I completely screwed up Julian’s 12th birthday party by inviting too many people, which cause him to shut down at the end, but I’m pretty sure he still likes me. He used to get mad at me when I would hold onto him with a death grip in parking lots and large stores, but he had a bad record of eloping. It was terrifying to have to run after a very fast 5 year old, especially in a parking lot. He was seven before I let him walk more than a foot or two away from me. (I never used a leash because I hate those things.)

If you’ve got a kid who takes things literally, you have to change how you talk to them. For example, I once told Julian to drop the jar of jelly he was holding after he was told not to eat anything. I was making dinner and he didn’t need to eat so soon before.

He dropped the jar.

Major mom fail.

Thankfully, the jar was plastic. That would have been an awful mess otherwise. Matthew and I have had to re-think things before we say them, because Julian thinks differently, and so does Lily, to an extent. We are still trying to figure out her thought patterns. She doesn’t quite think on a 10-year-old level, so we have to tread carefully.

Super parent

Final Thoughts and Tips:

If you have to buy things to keep your house, kid and car safe, do it. You’ll thank yourself later.

It really does take a village. I have friends that have kids with all kinds of physical/ developmental disabilities. A few have kids with autism, and they have been so helpful when I’ve needed them.

Being a parent of a special needs kid will make you a different person. I’ve fought for Julian since day one. Lily’s issues haven’t required so much of a fight, but I would do the same for her. It makes you tougher and less likely to take people’s crap.

Breathe and find something that makes you laugh. Comedy will get you through anything.

Get a binder and organize all of your kid’s paperwork. Julian and Lily have their own binders.

You are not alone, and get help if you need it. Take time for you, because your kids need Mom at her best. If you’re tired, sad and cranky, that’s not your best.

If you have other kids, let them be involved in adjustments. It’s not easy to be the sibling of a special needs kid. My kids have been pretty good about Julian, but it can get hard for us as parents. Cameron and Lily have a post about this in The Siblings’ Turn

Allow your child to live their best life. If they can do it- let them. My friend Laura Leigh’s son, Levi, is seven. He is in a wheelchair due to Cerebral Palsy, and he is an awesome kid. He smiles for days, gives his younger sister Presley wheelchair rides and loves school. I let Julian run cross country in the fifth grade and he loved it. We have a rule that his diagnoses aren’t excuses for not behaving. He does have bad days, but he doesn’t get to say, “I’ve got autism, so I get to act like that”, “I forgot my ADHD meds, that’s why I’m like this today”.

Most of all, love and accept your child the way they are. It might sound weird that I wrote that, but it is saddening that many parents don’t. Acceptance and love matters- it’s everything.

Quotes courtesy of Pinterest

Recommended Reading: The Spark: A Mother’s Story of Nurturing Genius

Twin Mummy and Daddy

The Summer Vacation Recap

It’s been an interesting summer so far at the Sanders house. Sleep has become Cameron’s favorite activity and Lily can finally see her bedroom floor. Julian turned 12 on July 18. I don’t have any pics from the party because it was probably one of the worst ones we’ve ever had.

Staying Home for the First Time

I’ve never been home full time for a summer with the kids. I’ve always worked. This is a whole new adventure for me. Before school let out in May, I started a list of ideas to keep the kids busy. I knew this wouldn’t be an easy task with three kids who have various interests.

It’s a Big City Out There

Louisville is big, and there’s a bunch of suburbs, and that’s where we are. There’s a lot to do, but it can get expensive.

Enter the Cultural Pass. This is offered through our local library and it’s free, so I snatched three of them. Each kid requires one, and I get in free to each place because I’m Mom. Yay. We went to the Louisville Zoo (minus Cameron, because he had a migraine), the Louisville Water Company, and the Louisville Science Museum. We took a cousin and met Sara there with her husband and daughter, Bella. (She and Lily are besties.)

We also went to Henry’s Ark, a free petting zoo about a half hour from home. We love this place. It’s small so it’s not overwhelming. There’s even a few cats. Once we were here and I was horrified at hearing a peacock make noise. This time the peacock was quiet. There were baby ducks everywhere and everyone loved them.

Lily is the last kid in elementary school. The school has a sensory garden and every summer, families help take care of it. This is the last year that we get to help out and it makes my heart a little sad. There’s lots of water and some weeding involved. It rained a lot during our week, so we only got to the garden a couple of days.

We have also been seeing some free movies during the summer like:

  • “Angry Birds”
  • “The Star”
  • “The Emoji Movie”
  • “Boss Baby”
  • “Despicable Me 3”

We also saw “Uncle Drew” for Julian’s birthday.

What’s Next?

School starts in just over three weeks and that makes my mom heart very happy. In fact, we are going school supply shopping later this week. School starts August 15.

What’s next is our long awaited trip to Daytona Beach, Florida. We leave August 4 and will be there for a week. Is Daytona Beach ready for us?

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

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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

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