Nurturing with Love and Understanding: Parenting a High Needs / Special Needs Child

All I ever wanted in life was to be a mom. When I was a little girl, I pictured myself as a mom to 5 kids, ALL girls. HA. Little did I know what God would bless me with. What we picture in our minds does not always become our reality. My reality of becoming a mom happened, but I am a mom to three, ALL boys, whom I love fiercely. However, what I pictured my life looking like as a child, is not exactly my reality.

None of us expect to be parents of a high-needs child, it can be a dark and lonely place. Parenting a high-needs child requires dedication, sleepless nights, and endless love and support. I didn’t realize I would have to fight so hard to get my high-needs son the support and resources that he needs to thrive.

What is a high-needs child? A high-needs child is simply a child who requires more needs than that of a “typical” child. Some of these children are unable to be left unsupervised, they may have emotional or behavioral disorders, or they might have physical disabilities. Special needs are another term used to describe these children, however, that term is outdated.

High needs can encompass a wide range of conditions and disabilities, including but not limited to:

1. Developmental delays: Delays in reaching milestones like walking, talking, or social skills.

2. Learning disabilities: Challenges in reading, writing, math, or processing information.

3. Intellectual disabilities: Below-average cognitive functioning that affects learning and adaptive skills.

4. A range of neurodevelopmental disorders affecting communication and social interaction.

5. Physical disabilities: Limitations in mobility or physical functioning due to conditions like cerebral palsy or muscular dystrophy.

6. Sensory impairments: Hearing or vision impairments that impact daily living and learning.

7. Emotional or behavioral disorders: Challenges in managing emotions or behaviors that affect interactions with others and daily functioning.

It is important to remember that each child is unique, and the term “special needs child or high needs child” should be used with respect and sensitivity. Children with high needs can thrive and make significant contributions to their families and communities. And when provided with the appropriate support, understanding, and opportunities for growth and development these children can really shine.

If you are a parent of a high-needs child, welcome. I too, am a parent of a high-needs child and I have been on the roller coaster ride of how to parent him and find him the support he needs to feel secure and loved in life.

So far, throughout my parenting journey, I have felt alone, confused, and frustrated. There were times when I honestly wanted to give up and run away. I asked God why he picked me to be the Mom to this boy who I felt like I couldn’t help and I felt unsupported many, many times throughout this journey.

I would look at other kids and wonder why my son had to have so many behavioral struggles, be defiant, and do the opposite of what we asked of him. I didn’t know how to parent him, it seemed everything I tried failed. It would create more upset and anger in my son. Without going into too much detail, to protect him, I felt lost and alone. Then I realized God gave me this little boy to love, cherish, help, and guide through life and that God would walk alongside me.  

The key parenting advice I can offer is to nurture a strong parent-child bond and trust your instincts. Listen to your gut. My gut has “saved me” many times throughout my life. In my experience, following my gut, particularly in raising my high-needs child has proven to work.

Make sure to maintain empathy, both for your child and those around you. It’s important to understand that these children strive to navigate challenging and sometimes unfair circumstances to the best of their ability. These kiddos don’t mean to “be bad”, “not listen”,  or “be challenging”. They are trying their best and they most likely have unmet needs.  

They say all behavior is due to an unmet need. I truly believe this, but at times it has been difficult for me to understand and try to figure out what the unmet needs are/were. This led to frustration and again, feeling very alone.

Parenting a high-needs child can be difficult and you may feel alone, like I did. Trust me, you are not. There are about 1 in 6 (17%) of children aged 3-17 years were diagnosed with a developmental disability in 2017. I am finding that the more I share and talk about parenting a high-needs child, or a child with “behaviors”, the more other parents share with me that they are too.

Building a strong community is vital to receiving support and guidance during this parenting journey. I want you to feel empowered to reach out to others for support, whether that be asking for help with meals, asking for emotional support, or child care.

Taking care of yourself is just as important as taking care of your child. You need to get enough sleep, eat healthy, and exercise. Promoting self-care and emotional and physical support is key to being able to parent these children for the long term.

I will admit that I am not great at prioritizing myself and allowing myself time for self-care. A few things that I do to promote taking time for myself include walking, meeting a friend for lunch, and listening to podcasts. I have focused on personal growth a lot over the past few years. I honestly had a hard time coming up with 3 things I do for myself…Moms, we need to do better at taking care of ourselves!

Some children require more caregiving than others. No matter what they require, there is a huge mental toll that can take hold of you if you don’t prioritize yourself and your needs. Remember, “not all disabilities you can see”.

Depending on your child’s needs, you might find yourself having to parent them differently than you thought you would or differently than you parent your other children. I know this is the case in my household. Figuring out what works best for you and your child is important. Remembering that this might also change from day to day. Some of the techniques that work for my son today, might not work tomorrow or next week. Honestly, sometimes what worked this morning won’t work this afternoon. Being flexible and not always having to be “right” is key.

We have found that with our son, using “old school parenting” techniques DO NOT WORK with him. Yelling, raising our voices, demanding things be done how we want it done, do not work with him. He needs to feel in control. So we have to parent differently. We try to be understanding with our boys, we try to say “yes” as often as possible, we try to let them do things that they want to do and how they want to do it as much as possible. Our son also thrives with a structured schedule and he does not like to deviate from that schedule.

When my son was in the “thick” of it in regard to his behaviors, we spent countless hours trying to figure out which type of healthcare professional he should see, how to get a referral, and how we were going to pay for it. Navigating the medical world and finding your child the services and help they need can be a difficult journey. It took us over a year to get our son assessed by a specialist, then come to find out, during his appointment our insurance wasn’t going to pay for the services, visit, etc. so we only got to be there for ½ the appointment time. Luckily it was enough time and they were able to get enough information from their testing/assessment to provide us with 2 diagnoses.  My piece of advice to you is to never give up and advocate for your child. You are their biggest fan and biggest advocate.

Supplements, medications, therapy are all things that may benefit your high-needs child

A high-needs parent coach can help you navigate these confusing waters. I know I would have loved to have known there was such a thing as a high-needs parent coach when we were trying desperately to find our son the resources he needed. The path to finding resources and the correct healthcare providers is not linear. Having help is a huge benefit and it can cut down on the time it takes to research and figure out the frustrating process.

Finding someone you trust as your child’s provider is important. I want you to know that you have the right to switch providers for whatever reason. Many specialists are difficult to get on their schedule or they are located far from where you live. Nowadays, there are many specialized providers that offer virtual appointments. The biggest tip here is to keep advocating for your child’s needs.

As your child gets a little older, empower them to become their greatest advocates as well. Make sure they know to advocate for themselves in their school and/or work environment.  Really, wherever they find themselves. Teaching them to have good communication with their teachers is vital to their success in school.

 
Our son began to truly shine and excel in school when he formed strong bonds and meaningful relationships with his teachers. The upper elementary school years presented us with some of the most challenging moments with our son. However, as he transitioned to middle school, we noticed a significant improvement in his behaviors. While he still faces struggles, his moods and behaviors have become much more manageable, and we are encouraged by his progress.

Parenting a high-needs child is truly a journey of trial and error. With our son, we’ve learned that what worked yesterday might not work today or vice versa. Each day brings its own unique set of challenges and victories. Some high-needs children may exhibit behavioral issues, while others may have physical disabilities or struggle with feeding and processing. Understanding and addressing these diverse needs require patience, adaptability, and a willingness to embrace change.

It is important for you to create an environment where your child can truly be their best. Where they feel supported and comfortable. This may be a quiet area or it may be a place your child is able to do meaningful activities for them. Encouraging and educating others is vital to allowing our children to feel understood and a part of the community they are in.

Remember, having a high-needs child brings on a unique journey in life, but you are not alone. Create a safe and inviting community for your child and for yourself. Prioritize your needs along with your child’s needs. Ask for help when needed and always advocate for your son or daughter. We are all on this journey of life together, through the highs and lows. Message me for support or reach out to a high-needs parent coach to help guide you through this sometimes-difficult road to finding services for our remarkable children.

XOXO

Jess Wayne

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