Monday, May 12, 2014

Blessings and Struggles of Being a "Special Needs" Mom

On Mother's Day, I reflected on the blessings of being a Mom.  I can see so many blessings that have been added to my life since I first became a Mom.  I think of all the "special" Moms out there that have extraordinary tasks on their to do list each day because they are the Mom to a child with special needs.  I hope those Moms who have special needs children, had an extra special Mother's Day!    

I have met and been blessed by some of the most incredible people because of my son's special needs.  Our special needs children encourage some to think outside of themselves and extend in love and grace, to those who have many more struggles in this life than themselves.  Just a few weeks ago we were blessed by some of these such people as I saw the love and grace of others extended to the hurting and struggling families that are parenting special needs children.  A local Church offered a free event to families of special needs children.  We've been going every year since my son was young when it first started.  This event is something that is looked forward to by my son every year.  It's a carnival complete with a petting zoo, train rides, inflatables, games, free lunch, photo booths, music, sensory play, face painting, clowns, mascots, hand sewn capes for our little and big "super heroes" and lots of free gifts.  It is done amazingly well and they are amazingly generous!  The only requirement to get in is that you have to have a special needs child.  Since it's for special needs children only -the lines are very low if any at all, the staff accommodate those who struggle to wait or just don't "get" the game and they allow the kids who are "too big" by the world's standards to do that ride or activity anyway.  All the parents there "get it" when there's a kid melting down and there are no stares or jeers.  It's a place where these families and children are truly welcomed and beyond that, they are loved lavishly.  I think of Heaven where our children will one day be loved lavishly by the King of Kings!  It ministers to worn out Moms and Dads that are just trying to find joy in any given day in the midst of struggle.  I truly, truly appreciate this ministry to these families like my own.  They are showing the love and grace of Christ to a portion of the population that often sees little in the way of love or grace given to them.  So that's a big blessing I'm thankful for this Mother's Day!         

It wouldn't be Mother's Day for me without counting that blessing of the second Mom my son has - Brittney!

If you have been reading my blog, then you know that my son is very blessed by Brittney - his 12 year caregiver/helper.  She fills in the gaps for me (of which I have many) and she is one of those rare people who sees past the disability and truly loves as Christ loves.  She loves those who are hurting and outcast.

She is a faithful servant of God, ministering to my son's needs and our family, as she steadfastly does her job each week without complaint.  When I have rough days - I only need to see Brittney come through my door day after day, to know God is right here with me!

So I thought I'd share with you some of the reasons why special needs Moms are indeed special parents.  They endure special hardships and restrictions on their lives, marriages and relationships with their other children and people at large - that the average family won't encounter.  So here are a few ways that the life of a family with special needs children can be impacted:
  • Church - many families of special needs children are unable to worship together or attend Church at all.  I'm encouraged however, that more and more Churches are starting to offer a special needs ministry these days.  There was a period of time when my son was young, that we weren't able to attend our Church because they didn't have anyone to help with his needs.  
  • Get Togethers - many families with special needs children are isolated.  We can't just take our children to someone else's house.  Apparently, everyone who knows us knows that, because we rarely get invited as a family either.  LOL!  We have learned to accommodate this aspect of our lives by having people over at our home instead.  That way Mason can be in his familiar environment and we can interact and enjoy our friends still.  It's a little sad for my daughter because she misses out on things like camping and traveling for various things our friends do with their families.  However, it's where God has us and it's something we try to make the best of.  My husband built a fire pit out back so we could "roast marshmallows and have a camp fire outback" since we can't go camping with friends.  We make it work :)
  • Financial Impacts - Kids with special needs are expensive!  Medications, co-pays, non-covered medicines, supplements, "experimental therapies" and assistance - they all add up.  Even the cost of foods (eating all clean/organic for my son) can impact a family financially.  
  • Going Out on a Date - Dates are rare and marriages for families with special needs children have an extremely high divorce rate.  It's hard to find time for each other.  The demands are constant and draining.  Often these children can't be left with just anyone or a regular babysitter - it requires training to know how to handle their behaviors, dietary needs, special style of communicating or using augmentative communication devices etc.  Some of them require skilled nursing care for a parent to even leave.   
  • Movies, Plays or Sibling Performances  - My daughter was in a ballet recital and we couldn't attend together as a family.  My son would not sit through that type of event without becoming impatient or noisy or both.  We also can't just go to a movie as a family.  One of us has to stay and watch my son and the other has to go or we switch off.  I attended the 2pm performance and he attended the 7pm performance.  If we have a helper that can stay with my son, then we are able to attend together.   
  • Travel - our kids don't travel well so family vacations are rare.  They can become upset, anxious and have meltdowns.  When they do travel well it is more like "relocation" instead of vacation because you have to bring all their special equipment (foods, medications, adaptive equipment, toys etc.) and then finding restaurants to eat at or being able to go see sights are often unable to be done -if you can make it to the destination!  Kind of takes the joy out of it all.  ;)- 
  • Eating Out - often they can't eat out because it's too loud, too long of a wait to get the food or if they can make it through that much, they make too much noise and bother others, or then when they are done -they can't wait for others to finish too.  That's not counting the dietary restrictions that you have to accommodate if your child has a restricted diet. 
These are just a few things off the top of my head and I'm sure there are more and the severity of restrictions on a family's life have to do greatly with the type and extent of disability.  Regardless, having a child with special needs is very impactful to a family at any level of disability.

So my thoughts today turn to these special Moms that are dealing with things much more severe then myself.  Those who love the unloveable, those who deal with so many things as a Mom that most people know nothing of.  These are the unsung hero's of Mother's Day.  I praise God for the faithful people who come alongside of those who struggle.  I praise God for the gift of Moms.

Happy Mother's Day to all the Moms - with special needs or not!


  1. Well said. I am glad you have someone like Brittany. It would be so nice to have someone like that for my Alex.I loved seeing this slice of your life.

    1. Phyllis - It is a slice of my life where the power of God is at work the most. Thank you for reading. I am fully aware of the supernatural blessing of Brittney - my daughter tells me she thinks Brittney is an Angel in disguise on earth - LOL. Blessings, Colleen

  2. What a blessing Brittany must be! And the church's carnival sounds awesome too! Your list hits the nail right on the head that's for sure! Hopefully many people will see this great post and be inspired to help a special needs family out!

    1. Sylvia - Thank you - I hope it does inspire at least one person to reach out to a family with special needs kids. It's a tough life some days, that's for sure. :)- Blessings - Colleen