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

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Getting Assistance for Your Child: Essential Questions to Ask

It’s Not a Parenting Failure to Get Help

I once told my mother that there is a reason that people spend a long time in school, take really hard tests (in some cases, more than once. I’ve been told the BCBA exam is horribly difficult) and get observed for a lot of hours to become mental health professionals. They are dedicated to what they want to do. They have to continue that education by taking classes and renewing their licenses every so often. States want to make sure these professionals know what they are doing and do so ethically. I also told her that there is only so much that I can do as a parent, even knowing what I do. There are a lot of things that I don’t know, and that’s why I felt that at one point, it was time to get outside help for my kids.

In Lily’s case, there wasn’t much of an option. Her delays were severe and required outside help. She needed help learning how to walk, talk and do other tasks that I couldn’t have taught her on my own. In the beginning, I really did blame myself, but after hearing that there was no way I caused her delays, I felt a lot better.

Julian definitely caused some debate. I knew what I was working with after he was diagnosed, and yes, I could have worked with him on my own. With two other kids and a full-time job, plus not really knowing what to do or how to do it, it really was time for the pros. He’s been to group therapy for social skills, which helped a lot. Every Tuesday for almost his entire third-grade year, he got out of school early to go to group. He learned how to interact with others appropriately, to speak up, along with other things. Julian is a quiet kid by nature, and we’re okay with this.

I just don’t want him to be so quiet that he is ignored or entirely left out. He has also seen a psychiatrist, and we loved her. Unfortunately, she had to stop seeing patients after some post-birth complications, so now he sees a psychiatric nurse practitioner.

It is okay to get outside help. We’re not just parents- we are also humans. We don’t know everything, and that’s okay. Your child will benefit greatly from outside services.

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Finding Assistance

There are many ways to find providers, it mainly depends on what you need and if you already have someone helping you, like a social worker or someone similar. If you’re looking on your own, it always helps to start by asking other parents you know that are in a similar situation. You can also ask your child’s pediatrician.

That’s where we started with both Lily and Julian. We moved around a bit by referral. It just so happens I used to work with the psychiatrist that started the practice that Julian is at now. (He’s absolutely great, but for obvious reasons, he can’t see Julian.) If nothing else, there is always Google. Google is everyone’s friend.

A Few Definitions:

Provider- a professional that provides some sort of service for your child

BCBA- Board Certified Behavior Analyst (these people do great things, lots of behavior modification, addressing challenging behavior, among other things)

DSP- Direct Support Provider (people who come into your home and work with your child on life skills, social skills and other things they may need. I worked as one for about a year and it was a lot of fun.)

Respite Care- to give parents or other caregivers time to care for themselves, run errands, etc while their child is being cared for.

I highly recommend checking with your health insurance carrier/Medicaid to see what is covered. These services can get very expensive, and insurance paperwork can be a huge challenge. Waiting lists are a thing and can be very long. It can be a bit weird seeing people you don’t know in your home and working with your child. This may take a while to adjust, especially if there are multiple people. Lily had three therapists a week at one point and it was a very weird thing. If you need to set limits, set them and be as firm as you need to be.

What You Should Ask

There are some questions that can’t be missed like:

  • What is your availability?
  • What experience do you have with this population?
  • Are there behaviors that you feel are too challenging for you? Everyone has their limits, and this is okay. My personal limit is spitting. Can’t do it.
  • How do you view your relationship with the rest of the family- siblings, parents, etc?
  • Best way to reach you? Phone, email, text?
  • How will you update me on my child’s progress/needs?
  • Emergency preparedness? Most agencies have trained their workers on a plan for this, so make sure to ask. The practice I worked for had a very detailed plan for injuries, weather and other emergencies.
  • References.

Of course, follow your intuition on the people/places you look at. If it doesn’t look right for you, most likely it isn’t. You will know when you find the right place or person for your child. Call those references. Read through the notes you made during the interviews. Do your research. You’ll thank yourself later. If you are looking for your child to be part of a practice, the questions above will be slightly different. Most places will allow a walk-through and give you someone to talk to. They’ll be able to answer questions, give you information to take home, and follow up.

The road of parenting is sometimes a rough and bumpy one. Looking for outside help is just a small speed bump.

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Information courtesy of Seattle Children’s Blog

Pics courtesy of Unsplash

Easy Peasy Pleasy

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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

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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

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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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