When It Isn’t Just A Stage In Life

As children grow they go through various stages in their development.  There are common milestones you expect children to reach in their early years.  Each stage brings about different struggles for the child and in turn parenting the child.  Often times mothers are encouraged by being told it’s just a stage.  Teething, learning to roll over, sit up, walk, crawl, dress themselves, brush their teeth, feed themselves, wash their hands…everything they work through is a stage in their development.  They will move past the current stage and on to the next.

It’s an encouraging thought to most moms when they’re told it’s only a stage.  The thought offers hope and enough encouragement to keep going and pressing on to tomorrow.  Most moms know that their child will eventually learn how to handle a fork and spoon.  Someday half of their meal will not be thrown across the room, on the floor and all over the child’s body.  Eventually, their children will be neat(er) eaters.

Most moms know that someday when their child wakes up in the morning, they will get themselves out of bed and ready for the day by themselves.  No longer will they be going to their baby’s room, lifting them out of bed, getting them dressed, feeding them breakfast, putting on their shoes and getting them ready to face the day.

When It’s Not Just a Stage

Notice I said most moms.  What about the rest of us who know that the difficulties of parenting their special needs children is not just a stage?  The hard truth for many of us is that our child will NOT grow out of the very same struggles most moms might currently be dealing with.

As I’m writing this, Ladybug is 7 1/2 years old.  We began various therapies with her within a month of bringing her home (10 months).  Therapies haven’t stopped.  Between physical, occupational and speech therapy she has 5 appointments a week I bring her to, plus these services 4 times a week through the school.  There is no end in sight, this is not a stage.  This is our life.

Then there are the physical developments children are expected to achieve.  These developments allow for less reliance on their parents and gained independence.  The most common are learning to sit up, crawl, and walk.  At 7 1/2 Ladybug is doing none of these things independently.  If she wants to sit up, we need to help her (propping up with pillows is not an option).  We don’t have the luxury of sitting her up by toys and going to the kitchen to finish the dishes.  She can’t pull her self up on furniture into a standing position.  She can’t walk without her gait trainer and someone right next to her helping.  These things are not a stage for us.  Although we continue with therapy and help her fight for these things, we don’t expect to move past this stage.  For special needs children, it isn’t a stage, this is life.

They Still Get Bigger!

Although the physical abilities of a special needs child may never meet the expected stages, they still get bigger.  This is one of the biggest problems that come with special needs parenting.  Our children are still dependent on us for the basic infant/toddler stage needs, but their bodies are growing like any other child.

Challenges of changing diaper in public restroom

We will never get past the stage of getting our child out of bed.  We will never get past the stage of dressing her.  Even though we are working on having her assist her with transfers, she’ll never do this independently.  So while she is physically getting bigger, she still relies on us for dressing, bathing, transfers, toileting…. It’s a stage she will never grow out of, but the physical toll on our bodies to care for her will only increase.

So What Can We Do?

I’ve said it before and I’ll say it again.  Special needs parenting is hard.  This post is really just a glimpse of what makes it so hard.  I believe one of the most important things for special needs parents to do is allow yourself to grieve the fact your child may never leave this stage.  You also need to make respite a priority.  Practice self-care without feeling guilty.  Remind yourself of the blessings that your children are.  Love them, and try not to compare them to other children.

There is also the value of a support system.  Find online communities of other special needs parents.  These are the parents who understand.  Support each other.  Utilize the support offered by friends and family.  Don’t be too proud to ask for help because if you don’t have help you will burn out.  You cannot help your child and be all they need to be if you have nothing left to give because of burning out.  Take care of yourself.