Warning: This is a “special needs mom” post. Read at your own risk. This is not uplifting or inspirational or encouraging. And it may not be biblical. But it is honest. Maybe my “typically developing” mom friends can relate in some way, but probably not. Forgive the specialized rant, but I need to write this to keep from going MAD.
Have you ever had a life so full of people that you feel utterly alone most of the time? I just really want to push MUTE, so I can’t hear all of the experts who would like to tell me how to live my life and do my job. This sounds harsh. I know. I’m sorry. Sort of. But sort of, I’m not.
This is a partial list of the consultants I deal with on a regular basis: physical therapist, occupational/feeding therapist, personal care attendant, vision therapist, neurosurgeon, developmental pediatrician, child psychologist, Early Intervention service coordinator, ophthalmologist, endocrinologist, cardiologist, orthodontist, pediatric dentist, speech therapist, orthopedist, physical medicine physician, neonatologist, dietician, ENT…
There are more, but I can’t remember them at the moment, and I think the point is made. These specialists are amazing. They are well-trained, great with children, filled with endless knowledge and caring hearts. But they are DRIVING ME CRAZY right now. They really are.
First of all, they overwhelm me. I could spend every waking hour trying to implement their suggestions and follow their protocols, and I would never be able to accomplish what they request.
Second, they contradict each other. And when they find out that they do, watch out! Because then I have to hear why one is right and the other is wrong. And that does not help me one bit.
Third, every conversation I have with any of them leaves me feeling guilty. Which pretty much means I feel guilty all of the time because I hear from one of them almost every day.
Fourth, they have NO concept of what my life is really like—how many people are constantly on my mind with great and pressing needs and how very isolating it is to be a “special needs mom”—four times over—and a “typically-developing mom”—also four times over. Everyone is pretty much scared to engage—so they don’t—or they do, but from a comfortable distance.
Fifth, they have no clue how wearisome it is to constantly have people in your house—several times a week—helping you but also making you feel like you live under a microscope. And there is no hiding that your dog pees on the floor and your kids pretty much live like pigs and relationships in your family are far from perfect.
Sixth, they don’t seem to account for the fact that I function on so little sleep that I can’t remember the last time I slept for more than three hours in a row—it was early September 2013, if I recall.
But the good news is that all this keeps me praying and alerts me constantly to my dependency on God. He called—He will equip. He will take my meager efforts and my utter failures, and He will make them into abundance. Fish and loaves all over again. He will. I know it. I believe it. I trust Him. His opinion and expert advice are all that matter. (Repeat to self hourly.)
That’s all. I feel better. Just needed to vent for a moment…survival tactic…prayers welcome…
crosseyedliving 
I absolutely adore this post. Thank you for sharing your heart. I had no idea you had a blog. This is TRUTH. I feel this way with just one child who has been ill for yrs. without a proper diagnosis…….so I can only imagine magnifying this by all the specialists you are dealing with to help your precious kiddos. You are my inspiration and I feel blessed to have an opportunity to get to know you better. You bless everyone you are in contact with. Your sweet spirit and love for the Lord are contagious! God gave you those precious kids because you have HIs wisdom and that motherly instinct is even more important than the specialists. I know as a mom and a nurse 2nd, I feel such frustration when the physician would not trust my “mom” instinct. I am praying most of all that in the quietness (which probably doesnt happen often) you have that peace from God that You are the true expert on your children. Dr’s/therapists are helpful, but they are also human. You are amazing and inspiration to us all. Hugs and many prayers!!
I could have been reading about myself here, right now even my tired is tired! But we’ll get there always do! Keep Positive your doing a great job X
I think you should print this, and anonymously send it to every single one of your providers.
Date: Thu, 29 Jan 2015 04:27:33 +0000 To: zaichenko@msn.com
I know how you feel and I only have 1 special needs child. That’s it. Just him.
I would tell my son’s therapist that I feel overwhelmed with all the “projects” they would give me. They would look at me shocked. He had 3 therapists he’d see every week, plus he was in a special needs preschool for 3 hours a day. Then on top of all that, I have a husband a home and a work-at-home job. Not to mention any other health appointments like seeing doctors for my son or myself.
My friend who all have neuro-typical kids don’t get it. Sometimes I just need somebody to drop by with a cup of coffee and a donut to surprise me, say hi, and give me a hug. And maybe even chat for a little bit in between the ABA therapist interrupting me to help with something.
I feel very alone most of the time.
Thank you for sharing your thoughts. There are many of us who feel the same way.
I am a mom of a young man with autism and I have been in your shoes so many times. Today I work for a provider as essentially a corporate trainer for direct service workers and I am going to share this with each and every one of my new hires and try to incorporate it into a training on engagement with families for the rest of our staff. Thank you for sharing your thoughts. This is powerful stuff.
I am so thankful that you are so honest. Having no experience or circumstances to compare, I can only say ….. your love for your kids, and your love for God, are so moving to me. I am blessed by that each time I see you or read your words … God bless, friend.
Truth!