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7 Things Special Needs Parents Want You To Know

7 Things Special Needs Parents Want You To Know

Parenting a child with special needs is much different than parenting an ordinary child. It creates obstacles in life you never thought you would have to face with a child.  

For parents whose children develop normally, there’s often a misunderstanding about parenting style, choices, and unseen struggles that come with a special needs child.  

Really, how different can it be? Very different!  

Being a parent is difficult for everyone, but for special needs parents, there are more struggles than you can imagine. To get a sense of what it’s like to raise a child with special needs, here are seven things special needs parents want you to know!

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We’re Lonely

It’s very lonely parenting a child with special needs. Trying new things, going to new places are all kinds of taken for granted when your child does have special needs.  

I would love to take my family to Disneyland, but I know my five-year-old with autism cannot handle the crowds, smells, rides, walking, and character costumes. There’s too much going on in one place for my son to handle.  

I know that a sensory meltdown will happen and it’s not worth taking the risk of (in a sense) torturing him. I live for the day our family can take vacations or even go out to restaurants.  

It’s easier sometimes to stay at home because you don’t want to deal with the meltdowns, the possible safety risk of bolting/running away, and the looks from strangers who simply don’t understand.

Even a trip to the grocery store can sometimes be disastrous if my son’s overly sensitive that day. (Thank God for grocery pickup!)

On top of not leaving the house much, it becomes quite lonely because I don’t have anyone to talk to. While my son does talk, it’s hard to understand, and it’s never enough to carry on a conversation. The same goes for my two-year-old who is just beginning to engage in conversations.

Basically, there are three conversations always going on in my home: My two-year-old yelling. My five-year-old vocal stimming and jumping. And me trying to ask questions and engage them in conversation.

We Grieve For Things Lost

Please, don’t misunderstand this! Special needs parents go through a huge adjustment period when their child is diagnosed with autism spectrum disorder and other needs. It’s hard news to get!

We grieve because we are grieving for the things in life that are going to be much harder for our children. Making friends, participating in crafts, joining sports teams, talking. 

All the things children without special needs do each day and excel at, our children with special needs have to work even harder.  

Why? They have to receive therapies and participate in special programs for kids to learn how to eventually excel at these things. Things like making friends and developing normal speech progression do not happen naturally for many. They are skills that need to be taught and fined tuned.

We’re Broke

I don’t mean that in a literal sense. Yes, we can still afford to take care of our children in regards to food, housing, clothing, and more. But we have a ton more medical bills from therapies!

Most neurotypical children do not need extensive speech, occupational, and physical therapies.

When you’re child does need these services every week, the cost adds up even with insurance.

Every week my son has an hour-long occupational therapy session and one 1/2 hour of speech therapy. The occupational therapy session costs $205 per hour, while the speech therapy costs $175.  

These costs don’t include the amount of money for specialty products your child might need like sensory swings, medications, wheelchairs, hospital visits, and more. The cost adds up quickly!

I don’t know a single family with special needs parents who would disagree with the financial struggle brought on by parenting a special needs child.

We Worry Excessively

What are the typical things you worry about with your child? Meeting milestones. Learning manners. Making friends.  

For special needs children especially those on the autism spectrum, there’s an extra element of worry in regards to safety. Children on the spectrum have no sense of danger. They bolt and they resist help. Mix that together with limited communication and it forms a recipe for increased danger.

Everyday activities like being in a crowded parking lot or nearby water are true fears for special needs parents. 

Our children don’t understand why they cannot bolt or take off in a parking lot without an adult. They don’t understand why they can’t run toward the water and jump in.

It is easier for children with special needs to get hurt because they have no sense of right and wrong, what’s dangerous and what’s not.  

I’ve had close calls many times with parking lots or inside stores where my son suddenly bolts for one reason or another. What adds another element of danger for parents on the spectrum is that many children with autism do not respond to their names.

If you lose your child in the store because he suddenly takes off, he or she will not respond to their name or come back when called. This is the biggest fear for special needs parents!

It Really Does Take A Village To Raise A Child

We’ve all heard the saying. But for parents of special needs children, it’s especially true! 

Instead of a village to help raise our children like friendly neighbors and relatives, we have a team of specialists and therapists to help our children catch up developmentally and continue to flourish.

We Suffer Our Own Hidden Battles

Between loneliness, financial stress, and excessive worry, special needs parents can develop mental health issues of ours. Many times, those mental battles are hidden from others as we put on a brave face going from school to therapy appointments.

But it’s a stressful life with a special needs child. It does not mean we love our children any less, it just means we all have the added burden of trying to maintain and care for our own mental health which can suffer from time to time.

Depression and anxiety are very real and are often the response to caring for a child with special needs. Especially because everything with our children comes first.  

Parents are often juggling different responsibilities that increase stress, therefore increasing the likelihood of depression and/or anxiety.

Burnout Is Real

Burnout happens when you cannot complete your everyday activities due to physical and mental exhaustion. Everyone is feeling ‘burnt out’ for a variety of reasons. Many because they are tackling home and work-life simultaneously.  

Most days I feel on the verge of burnout. I have missed therapy appointments for my son because I simply can’t do it that day. I’m too stressed. Too overwhelmed by constantly trying to meet all my children’s needs.  

I struggle sometimes to keep everything in my life together. My household and family as a whole count on me to always give.  

But when you keep giving and giving, eventually you have nothing left to give! That’s when you feel burnt out.

Unfortunately, I do think burnout happens to special needs parents more often. (I am not saying that parents of neurotypical children don’t get burnt out. Parenting is difficult!)

Final Thoughts

This article is in no way meant to diminish the parenting experiences of those with neurotypical children. Special needs parents just experience a different set of parenting difficulties.

Instead of worrying if our child will do well on a spelling test in school, we’re worried about if our child will ever communicate their needs effectively. 

I believe parenting children is difficult all around. But parenting a child with special needs adds extra difficulties to our lives that other parents don’t always fully understand.  

It’s a completely different world raising children with special needs!

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