Special Needs Parenting

My daughter was 8 when she started to lose her hearing. We didn’t notice at first because she became so good at reading lips that it wasn’t until we took a family camping trip that I clued in. In the van while I drove, I realized that she couldn’t hear me because she didn’t have those visual cues to help her discern what I was saying. All she could see was the back of my seat. When schools reopen in September, if you require masks to be work by staff or students, you will essentially be asking her to spend the year staring at the back of that seat again. Even with the use of adaptive equipment such as an FM system, she can’t understand what is being said without reading lips.

I know this for sure because of the times I’ve spent in an audio booth with tears streaming down my face as the audiologist said “ice cream” with her mouth covered with a paper and my daughter repeated “baseball”. Watching your child struggle to understand is heartbreaking.

I can’t imagine being in your position and all of the factors that need to be weighed in order to consider when reopening schools safely, but I need to give my daughter a voice. I urge you to also consider those who are deaf or hard of hearing when you sit down to make your new policies.

I have other fears as well about schools reopening as well as do many parents such as kids under heightened stress not being able to learn effectively and I’m losing sleep thinking about all the what ifs.

• What if play and hands-on discovery are no longer part of the school day?
• What if students are required to wear masks and those with lung conditions can hardly breathe?
• What if the students with special needs – those on the autism spectrum or sensory processing disorder or attention deficit disorder or learning disabilities or anxiety fall further through the cracks as schools struggle to meet the physical, emotional and educational needs of even their “in-the-box” students?
• What will childhood look like if restrictions continue but also what cost in lives may there be if they don’t?

These are challenging times and I can’t imagine that creating new policies is simple, but please do not make a blanket policy for teachers to wear face masks. To do so would condemn my daughter and others like her to certain failure.

Childhood mental illness is on the rise. A 2010 study by The National Institute on Mental Health found that one in five youth are affected by at least one type of mental disorder. There is a lot of speculation about why that is. Is it the rise in technology, the decrease in time spent outdoors, reduced face to face interactions, environmental toxins, social media, sleep, or economic downturn? Or is it just that there is more awareness and therefore an increase in diagnosis?

I am not an expert in psychiatry, science, or medicine. Therefore, I am not going to attempt to tackle those questions.

What I am is a parent. A parent whose life has been deeply affected by childhood mental illness.

Two weeks ago, I wrote an article entitled Admitting Your Child to a Mental Health Hospital. The words and experience resonated with other parents. Some even used the article to reach out to their circles for sometimes the first time to share with them what they had been going through.

That article was shared tens of thousands of times.

Since then, the flood of emails and private messages has been overwhelming. I’m honoured that people chose to share their personal stories and emotions with me and I carry them close to my heart. It is for those people and others like them that I am writing this follow-up article.

Some of the stories were so heavy that they were hard to carry. I had to step away from my computer for two days that first week as the weight of it became too much.

Children with anxiety so debilitating they no longer attend school, teens lost to addiction or suicide, parents signing over their rights as the only way to keep their child safe, families torn apart.

I tell you this because I need you to understand that there are so many families walking this road. Their stories are all different and yet, there are choruses that ring the same.

• They all love their children fiercely.
• They are weary.
• Worry keeps them up at night.
• They fear for how this is affecting their other children.
• They worry that they are not enough.
• Their whole family is suffering.
• They don’t know where to turn or what steps they should take to help their child. This sometimes paralyzes them.
• There are not enough supports or programs available in their area.
• Parents carry with them the additional burdens of guilt and shame as they keep the secret of what is really going on in their homes.

Can we rise up and make our voices heard? Mental illness in children is becoming an epidemic.

The demand for qualified professionals and effective treatments is rising faster than it seems the nation can keep up with it. While I can’t solve that, I know that silence is what perpetuates this.

Join me in erasing the stigma of mental illness by sharing your story.

Know that you are not alone. There are so many who are also walking this road.

Let’s talk about childhood mental illness and the effect it’s having on our society, our schools, our young people, and our homes. Just as we would share with friends and family if our child were suffering from a cold or the flu or had been diagnosed with a more serious physical disease such as asthma, we need to be sharing about how our kids are doing from a mental health perspective.

What if you didn’t have to carry this burden alone?

The magical thing about when we share our truth is that it allows others to share theirs.

Last week, when I shared about our decision to admit our daughter to a mental health treatment facility, it gave others the courage to tell their stories too. I’m not suggesting that you need to do as I did and announce it to the world. I’m not even saying that you have to announce it on Facebook.

But what if instead of being isolated and feeling like no one understands, you chose one or two trusted people to share with?

When I was debating whether or not I should write our experience, my friend said to me “Feeling alone is the cancer that fuels this. We worry about judgement, blame, and carry so much guilt. Which isolates us more. Are we perpetuating the stigma against mental health issues by being quiet about it?” So I put my thoughts to paper in the hopes that I could help others share their stories and feel less alone.

I’ll share with you the power of choosing the share your story. In my article about our daughter going to a mental health hospital, I shared this:

This kind of life can be so isolating. There are things that have happened in our home that unless you are also walking this path of mental health disease in your children would shock you. My husband and I have literally said to each other, “who could we ever tell this to?”

Last Sunday night, my husband and I sat around our friends’ kitchen table. We found the answer to the question “who could we ever tell this to?”. Because they had walked this road too. They understood. By the end of the evening, we were even laughing about the fact that none of us would ever have thought we could share our calling 9-1-1 experiences with others!

It felt so good to be around others who “get it”. To be able to be real and not worry about judgment. I want that for you too.

But for us to be able to get to that place, we first had to take a deep breath and say “my child struggles with mental health issues”.

Help me end the stigma. Not just for our kids who are suffering. But for us. I want you to be able to sit around your friend’s kitchen table and be real and raw and still know that you are loved.

Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

You might also be interested in reading:

Admitting Your Child to a Mental Health Hospital

Childhood Anxiety

What I Wish You Knew About Parenting a Child with Reactive Attachment Disorder

Last week, we quietly admitted our daughter to a mental health treatment facility. I say “quietly” because we told very few people at the time. There was no Facebook announcement, no sendoff.

My friend Michelle sat beside me at intake where I shakily signed form after form. I was there for 5 hours learning more about the program and answering questions to help them better care for our daughter and then I walked out alone. I felt empty and scared.The decision to admit our daughter was not one we had arrived at lightly. In fact, the wait list for this particular program was about a year long, so we had had a lot of time to think and rethink our decision. No matter how conflicted we felt though, the bottom line remained the same: we had to give it a try. We were out of other options. We had tried medication, therapy, and outpatient treatment programs. She was suffering. Our family was hurting. We were all living in fear as she continued to decline. It was time.

Our daughter has 3 mental health diagnoses. I’m choosing not to name them in this story because I don’t want this to just be about her and about us. My hope is that you see other stories in ours, to help you better understand and support families you may know who are facing this decision. Or perhaps you’ll see your own story in ours and feel less alone.

There is still such a stigma surrounding mental health. If our daughter had been diagnosed with Type 1 diabetes and she had to be hospitalized for a prolonged period until they could stabilize the disease and if during that time, we had to attend clinics on nutrition and lifestyle changes and information pertaining to her disease and treatment, no one would bat an eye.

We would have announced it on Facebook and put it in the prayer chain at church. There would have been an outpouring of casseroles and prayers and offers to help with our other kids.

But this isn’t the kind of thing that you announce on Facebook or tell people you run into. There is that protective feeling of wanting to shield her from judgment and scrutiny but a knowing that doing that also creates more shame around her disease.

We wrestled with our own feelings of embarrassment, guilt, and shame. We questioned “what could we have done differently?”.

We worry constantly that while almost all of our attention has been focused on the two of our kids with mental health issues, that a crisis could be building in one of our other kids and we may be missing it.

We feel like we are just doing triage, going from one literal crisis to another. It’s hard to even catch our breath.

This kind of life can be so isolating. There are things that have happened in our home that unless you are also walking this path of mental health disease in your children would shock you. My husband and I have literally said to each other, “who could we ever tell this to?”

Do you have any idea how isolating it is to live through “who could we ever tell this to?”? Who would be able to understand (and not judge) things that we can hardly even believe really happen?

Isolation can lead to feelings of hopelessness.

You need a village.

Just 4 days after our daughter’s admission, I found myself at a woman’s event at our church. In line at the buffet table, I answered “fine” to “how are you?” and “good” to “how are all the kids doing?” even though the truth was far from that.

The lie stung in my throat, making it hard to swallow.

Later that morning after the speaker had gone and the room cleared out, I was once again faced with “how are you?”

This time, there was no one else within earshot. I also knew the woman asking had gone through her own trials in life which made it feel safer to share mine.

As the story tumbled out, her eyes filled first with compassion and then with tears. She hugged me and we cried together. And then a magical thing happened. She pulled out her phone and pulled up her calendar and typed in our family’s name on her Wednesday afternoon and evening.

You see, I had shared that one of the many challenges we are now facing is that this program is super intensive and mandates that both parents attend parent sessions and family therapies and on Wednesdays, the time commitment works out to be 6 hours. Wednesday also just happens to be the hardest day for us to find child care for the other kids.

Here was this woman who was not just saying that she would pray for our family or would be “thinking of us”, but actually meeting a need, saying “my husband and I will be there this Wednesday and we will bring supper so you don’t have to worry about that”. What a gift.

You need a village. (worth repeating)

It’s only been a week, and already, we’ve needed to lean on our village.

That first admission day when my friend Michelle sat beside me? She did so much more than that. When I picked her up that morning, she presented our daughter with a gift and a card and these words: “Congratulations! I hear you got into an awesome school that’s super hard to get into and has a long waiting list. You are so lucky!” (all true)

She held us both up in that moment. Later, she took notes in the meetings. My brain wasn’t firing on all cylinders that morning due to the stress and I was sure I would forget important details. She took notes and remembered to ask things that had slipped my mind.

That same morning, one of our other daughters had woken up throwing up (from the stress) and my mom had come to our house to care for her. She also did laundry and changed our sheets. Do you know what a gift it was to crawl into fresh sheets that night after a long and emotional day?!

The night before the admission, we had a crisis here at home with our daughter. During that crisis, my neighbour offered to keep the other kids, to shield them from the worst of it, and to drive kids to and from piano and tutoring. Knowing that my other kids would be safe was also a gift.

Other friends took us out for supper the night of the intake. Honestly, we didn’t feel like going. We both just wanted to crawl into that bed with the fresh sheets and sleep for years. But we had committed and so we went and we ate good food and we were held up by people who loved us and after awhile, we even found ourselves laughing and almost forgetting. Another gift in the midst of such pain.

Is a mental health hospital the right place for your child?

Mental health hospital admissions are all different. For some, it may be an emergency safety admission that lasts for one or two days until the imminent threat has passed. For others, it may be a 30 or 90 day stay.

Our daughter’s program is 4-5 months where she stays at the hospital Monday to Friday and attends school, art therapy, music therapy, group therapy, animal therapy, and family therapy on site and is home on weekends with specific goals to work on at that time. Her program requires an intense commitment from both parents both in time and energy and an even more intense commitment from her.

And when her program ends, that is really only the beginning of the journey for us. We still have a long ways to go.

Perhaps you have come to a place where you find yourself at what feels like the end of the road in your child’s mental health journey. You don’t know what more can be done at home to keep them safe and healthy. Your family is fraying.

You walk around on eggshells every day, worried about what may set your child off. Or perhaps you hardly sleep at night worried that they may harm themselves or others.

I am not a professional and this advice is not meant to replace medical advice. You should always consult with a qualified mental health professional before making these decisions.

When to consider admitting your child to a mental health hospital:

• they are unsafe at home
• they are a risk to themselves or others
• they are under the care of a psychiatrist and/or therapist but are still not stabilizing
• the family is not able to manage their symptoms at home
• even working with professionals, you still cannot find the right medications or dosing
• you or other family members are living in fear
• your child expresses thoughts of or plans for suicide or attempts suicide
• addiction
• upon recommendation of your child’s doctor, psychiatrist, or therapist

Some of the symptoms/diagnoses that MAY require treatment at a mental health facility:

• suicidal ideation, suicide attempts
• self harm
• violent rages
• inability to cope with life
• eating disorders
• severe mood swings
• depression
• debilitating anxiety
• reactive attachment disorder
• post traumatic stress disorder or developmental trauma disorder
• obsessive compulsive disorder
• bipolar disorder
• schizophrenia
• substance abuse or addiction
• Tourette’s
• autism
• oppositional defiance disorder
• attention deficit hyperactivity disorder
• conduct disorder

Remember that a stay at a mental health facility is one tool that patients and their families can use. It does not create a cure, but it can be the beginning of more stability in the mood disorder or mental illness.

How to be the village:

• Act the same way you would if their child had had to go into the hospital for a serious physical illness.
• Show up. Just sit there. Be present.
• Affirm that this decision must be so hard but that you know they love their child and that this is what their child needs right now. Parents carry so much guilt. They need to be reminded that they are good parents, willing to do hard things like sending their child to get the right help, even when all their instincts as a parent scream at them to keep their child close.
• Take their other children for play dates, outings, or activities so that the parents can rest. They will typically crash physically and emotionally for at least a few weeks, possibly even months depending on what led up to the hospital admission. Having time to be alone and rest will help them to heal faster.
• Do something kind for the other kids. Bring a small gift, especially something like a craft or activity they can do. Spend time listening to them or playing a board game or Lego with them. They have likely been getting less than their share of attention in recent months as their parents have had to put the sick sibling at the top of the time and attention list. Siblings can carry their own worry and feelings of guilt.
• Bring healthy food. Snacks, meals, or gift cards for restaurants or take-out. And remind them to eat.
• If they are married, help them protect their marriage in the crisis by watching the other kids for them to have date nights, by encouraging their relationship, and by giving them opportunities to spend time with other couples.
• Sit and have tea or coffee with them. Let them cry and express all kinds of feelings. Regret, sorrow, relief at the new peace in their home, fear because the peace is temporary, dread about the future.
• Or just watch TV with them or take them to a movie or invite them to dinner. Sometimes it’s also nice not to talk about it.
• Offer to attend important appointments to take notes or hold their hand and debrief afterwards.
• Pray for them.
• Help them research. It is beyond exhausting to try to find programs and services and funding and these families are having a hard enough time just getting through each day. Help them research or make calls or fill out forms. There are so many forms.
• Serve them in practical ways. Laundry, housework, errands, house repairs. Dishes still pile up even when it feels like the world is crumbling down.
• Drop off comfort items. Chocolate or coffee or wine or whatever their comfort thing is.
• Send gas or grocery gift cards or cash. Having a family member in the hospital often means time off work, parking fees, extra driving, and additional expenses. There can also be a high cost for the treatment program and medications.
• Remind them that you are thinking of them and that what they are doing to fight for their child’s health does not go unnoticed.

If you are walking this road yourself, I’m thinking of you. It’s sure not an easy one. It’s likely not one you ever imagined when you began your parenthood journey. I know I didn’t! Please know that you are not alone.

Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

You may also want to read:

Let’s Talk Childhood Mental Illness

The Waves of Grief in Special Needs Parenting

What I Wish You Knew About Parenting a Child with Reactive Attachment Disorder

50 Awesomely Simple Calm Down Strategies for Kids

Parenting Myth: You’re Only as Happy as Your Saddest Child

When it comes to having a special needs child, there is one thing you are guaranteed to deal with and that is emotions. It can be hard to read emotions, hard to understand emotions, and hard to deal with emotions. If you have a special needs child and need help handling their emotions, then you may need these tips in your life.

In some ways, we think too hard about what our kids may need in the emotions department and can forget about using the simplest tools. I’m hoping these tips help remind you of all the tools you have available in helping your special needs kids emotionally.

Here are tips for how to help your special needs child emotionally:

Listen to What They Are Saying

Your special needs child needs you to listen to them. More than ever, they need someone to sit down and listen to what they have to say. This may not look the same for every family. If your child is non-verbal, help validate their emotions by giving voice to what they may be feeling.

Spend Time With Your Child

Helping your special needs kids emotionally can be so tough. One way I have found that helps a lot is by spending time with your child. It can be something as simple as sitting on the couch together. Being together allows them to know that they are important to you.

Schedule a Date Night With Your Child

One on one time with each of your kids is so important. I know that it is hard to do, especially when parenting a child with special needs, but it is worth the investment. Regular date nights will help your child more than you know even if only once or twice a year. Have this night scheduled, so your child knows that it’s going to happen. This is a great time for you and your child to get on the same level emotionally.

Teach Your Child to Express Their Emotions

Trust me, this isn’t something that happens overnight, however, it’s critical. Special needs children need to learn how to express their emotions. The first thing you need to do for this is to give them an emotional vocabulary. You can also teach your children how to express their emotions by being a good role model for them. Show them how to find a healthy outlet for expressing emotions such as listening to music, singing, talking to someone, exercising, watching a movie, and practising good self-care.

Get Outside Help

If your child is showing signs of struggling with anxiety or depression, it may be time to seek outside help. You may need to seek a counsellor, psychiatrist, or therapist to help you in this journey. Seek out someone who has experience with the type of special needs that your child has been diagnosed with.

Acknowledge Their Emotions

Our kids have BIG emotions, small emotions, and some that we can’t even understand. Don’t forget to take the time and acknowledge all of these emotions. You’d be amazed at how a little acknowledgment can help a special needs child. Let them know that their emotions matter. Validate them by validating their feelings.

Your Child Needs a Safe Environment

When it comes to our special needs kids and their emotions, they need a safe environment to release those emotions into. Any child should have an environment in which they can safely release those emotions without feeling judged. In this safe environment, they can also release these emotions without repercussions. Your home should be an emotionally safe space for them, but you can go a step further and create a calm down space or special area for them to go to when they are upset. We have a calm down corner in our sensory room that our kids can go to.

Helping our special needs kids emotionally also comes down to emotional encouragement. Your special needs child needs access to people, places, and things that encourage healthy emotions. As a special needs parent, you witness first-hand what your child is going through. Offering encouragement is the emotional equivalent of holding their hand.

If you’re looking for more tips and encouragement, join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

You may also be interested in reading:

Activities to Teach Kids About Emotions

How Special Needs Parents Can Best Support Each Other

Spider Emotions Matching Game

14 Things Your Special Needs Teen Needs to Hear You Say