why a special needs mom never feels like she has done enough

It's been a long time since I have sat down and wrote.  I have posted updates, pictures, little stories, but actually sat down and wrote a piece...it's been awhile.  Things have actually been more manageable the last few weeks. We have seen a decrease in problematic behaviors and have been just enjoying parenting our three children.  However, I go back to the hardest days in my memory and remember how difficult it was to keep your head held high.  I have been blessed to come in contact with so many moms, in similar situations, even if not an Autism diagnosis, but so many amazing, strong, and dynamic mothers who share at least one thing in common: we are tired.  The fight to exemplify every strength that your child exudes, the optimism that one requires to begin each day anew, and the courage it takes to advocate every day for your child is downright exhausting.  Here's a post I wrote a bit ago, in honor of my mommy friends like me:

why a mom of a child with special needs never feels like they have done enough

Parenting takes a toll on most normal adults.  The shift of attention and focus when raising a child, under typical circumstances, often present challenges for any new mother.  Perhaps you were a full-time working woman, jumping ahead on the career ladder, and once the new baby arrived, you had to adjust to a tiny infant needing you instead of the 9-5 client.  The change in schedule required an intense amount of flexibility and reorganization; in the past, you were turning your phone off at the end of a work day, or shutting down your computer to start your commute home.  Now there was no detaching from your new home life. 

Raising children is miraculous, rewarding, and beautiful; at the same time, it is also overwhelming, demanding, and you never quite feel like there are enough hours in the day.  Instead of working 40 hours per week, you are now putting in overtime on a regular basis.

Enter in the special needs child.  You had planned the perfect family.  You imagined the sequential order of your perfect children, talked about the perfect house, the perfect school, and the perfect life. 

Only in this dream, there was one thing that us parents should have realized in theory can never be for certain.  Achieving perfection.

The first time a parent hears that their child is different, sees the word "disability" typed in a report, or is told that they are not, well, 'perfect,' they are sent into a new world, on a journey to a different type of life than they had first envisioned.  In the pursuit of recovery, or maximizing the potential of your child, there are many steps along the way that pull the special needs mother in a thousand different directions and never allows her brain to shut completely off.

1)     Time.  I'm late on my deadlines at work. Did I spend at least 30 minutes reading to each of my children today?  I hope I adhered to the sensory diet. Recovery before five is the most crucial period...have we maximized the early intervention?  Did I work on their ABA  goals today?   I need to make that new gluten free/casein free bread before I go to bed tonight.
2)    Research.  I need to look at the new NIH studies to see if my child will fit the protocol.  I need to see what the latest published study claims to be the cause of the increase in Autism.  I need to compare the original definition of the word Autism and see how far we have come since recognizing this social and language disorder.  Why didn’t I call the director of the research program when he first was diagnosed?

3)    Money. How will I fit my work schedule into therapy, sports for the other children, and adapted lessons?  Is there a new Medicaid program we can apply for to inquire about assistance for families in our situation?  I know there are grants out there for therapy and programs, but how do I find the appropriate fit for my family? All these co-pays are sure adding up! Did I pay that bill for the recent labs?

4)    Therapy.  What are the newest, most researched avenues of recovery?  Did that little boy from school have luck with Cranial-Sacral therapy?  I’ve heard that hippotherapy has helped with kids of other disabilities. I need to find a piano teacher to work that creative side of his brain.  Maybe I should have a PT eval in addition to his OT for improving his gross motor skills.  Did we get all of his intensive therapy hours in this week?

5)    Diet.  It’s Mary’s birthday at school- did I send a GF cupcake?  I really need to get him to eat all of his vegetables.  Is he getting enough calcium or protein?  I surely hope he ate all of his lunch at school today.  Oh no, we forgot to add the supplements to his milk before he went to bed.  I need to call his doctor to re-run his nutritional eval.

6)    Family and Friends.  Did I call my brother on his birthday?  I hope I have made contact with at least one of my college friends this week.  I can’t believe I haven’t talked to my sister in a month!  Did I ask my daughter about her school day today?

7)    Future.  Will my child be able to function on their own?  Will he have friends and belong to clubs and sports teams?  Will he go to college and be self-sufficient in society? Will he ever get married?

As you can see, the brain of a special needs mom never completely shuts off.  Downtime is spent on your laptop, or in the kitchen making special snacks, or trying to accomplish the small list of daily chores that still need to be completed.  When you push yourself extrinsically, your body tells you to rest.  It’s sore, it aches, and you either push through the hurt or you take the time to recover.  When intrinsically exhausted, the effect may not be evident on the outside, but on the inside you are almost ready to give up the fight.

Until someone tells you the following…
You are doing enough. 
You are doing more than enough. 
Your child is succeeding because of your efforts and your strength. 
Do not give up hope. 

Hug a special needs mom today.    Not because you feel sorry for them…

just because they need it.