What Special Needs Family Life is Really Like: An Overview

This is day 2 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page.

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“The special needs family.”

This very phrase lends itself to these amazing families being put into a box that maybe they shouldn’t be, and some families even push back against the phrase. {Please read the disclaimer on the landing page to learn more about why I have chosen to use this phrase for this series.}

The greatest need that the special needs family has is recognition of the fact that they are first and foremost, “normal” people, just like you.

Think of all of the every-day needs that your family has: schedules, field trips, business trips, church functions, bills that need paid, sibling disputes that need settled, diapers that need changed. All of those things apply to a family with special needs as well. The everyday needs don’t go away just because they have extenuating circumstances piled on top of them.

“No two special needs families are the same.” (Katie Emanuel, Wonderfully Made)

The Special Needs Family and Logistics

The special needs family is a busy family.

Families who have children with special needs have schedules stretched beyond what most people can imagine. Some special needs children are in extra therapies (such as occupational therapy, speech therapy, feeding therapy, or applied behavioral analysis therapy) every day. On top of therapy, most special needs children need to see medical and behavioral specialists regularly. If they have a weakened immune system, doctor visits and hospital stays are much more frequent than that of the average child. The main caregiver for the child (in probably most circumstances, the mother) is literally running around like crazy every day, every week, just to keep him eating and growing and falling as close to typical milestones as is possible. Every mother’s job is exhausting, but the mother of a special needs child usually has levels of exhaustion that the average mother can’t even comprehend.

Then there are the mounds of paperwork that go along with everything previously mentioned. These families really could do well to have a full-time scheduler and paperwork manager on the family staff – but alas, that’s not possible.

And that’s just scheduling stress. Not to mention physical stress, such as lifting children who can’t walk or care for themselves or holding down a child who is having a meltdown just so he doesn’t harm himself or others (sometimes getting physically harmed in the process).

And then mental stress. Both fathers and mothers endure a great amount of mental strain when raising a child with a developmental disorder, especially if that need is a mental one. These parents often struggle with anxiety and depression. There have even been studies done that indicate that the cortisol levels in moms of adolescents and adults with autism spectrum disorders are similar to the levels found in those suffering from PTSD due to combat or other trauma. Many families with special needs seek professional personal counseling or marital counseling services to help them cope, adding yet more appointments to an already overtaxed schedule.

The Special Needs Family and Marriage

Marriage is hard for any couple. It takes painstaking work, time spent together, sacrifice, tears, conflict resolution skills, and a strong level of commitment. Any time there are extenuating circumstances that add pressure to the marriage, it’s easier for the marriage to crack. Having a child or children with special needs adds a tremendous amount of pressure.

It’s hard for the average couple to find time for conversation and intimacy in this hectic-paced life. But as you can see from the aforementioned scheduling stress, it’s doubly hard for special needs families.

A couple desiring for time away might also struggle to find that time because their child needs a level of childcare that the average babysitter simply can’t provide. This leaves the couple very tied to the home, with “date nights” coming infrequently and romantic getaways nigh impossible.

When you have two people who are pouring their lives into parenting a child or children with special needs – and all that that entails medically, socially, emotionally, and financially for them – there isn’t a lot of time and resources left for them to focus on their marriage. The marriage can take the back burner. These marriages often end, simply because the couple does not have the energy, fortitude, support, or resources to make the marriage work.

The Special Needs Family Dynamics and Sibling Relationships

The family dynamics of special needs families are as diverse as the unique needs of the child, and can be further complicated by the needs of the other children in the family.

Some families have multiple children with special needs.

Kathryn Sneed currently has a son with autism and daughter presenting with special needs. She has spent nearly a month apart from her son who desperately needs her because she is seeking medical answers for her daughter’s presenting conditions.

Emilee Roberts is the mother of three special needs children, whose needs include Autism, sensory processing disorder, and ADHD. She says this about her family dynamic:

“They all affect each other since they all have special needs. Sometimes this can be positive, many times it’s not.”

Katie Emanuel shared that her toddler-aged daughter has already tried to take over tasks in an effort to care for her older brother who has autism – small things like getting his shoes for him. As both children age, Katie expects that such actions will continue.

Logistics can make it hard for a special needs family to get out and participate in social activities, for various reasons. This can be very hard for neurotypical children who don’t have any special needs but live with a special needs sibling. They might have to sacrifice their social life because their parents simply don’t have the time or the resources to make sure they are involved with friends and social activities as much as that child might like. This could even lead to resentment.

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This is just a very brief overview of what life is like for the special needs family. In the following posts, we are going to be hearing from some of these families. They are going to go more in-depth and share what life really is like for them. They are going to talk about their marriages, sibling dynamics, and finances. It is my hope that through their words you will gain perspective and learn just how to encourage families with special needs.