I Don’t Want Your Advice

I am the mother of a child with special needs, and I don’t want your advice.

There.  I said it.

I don’t want your advice.

I don’t want to hear your opinion about how I parent my child.

I don’t care about some study you read online that says that everything I’m doing is wrong.

I don’t want you to send me articles on Facebook that you skimmed over and think might be “helpful” when “dealing with” my child.

I don’t care about your snide remarks or rolled eyes when I mention that I am getting my child evaluated for another possible diagnosis.

I really, REALLY don’t want to hear about how you think that Sensory Processing Disorder or Autism or ADHD aren’t real.

I. Don’t. Want. Your. Advice.

Why, you ask?  Why wouldn’t the mother of a child with special needs want more advice, more information, more opinions?  Why wouldn’t she do everything in her power to help her child?  Why would she turn away anyone’s well-intentioned suggestions?

I’ll tell you why.

Because I’ve read it all already.  There is nothing out there that I haven’t seen, read, researched, and discussed with our doctors and therapists.  Nothing.  I’m not exaggerating.

No one does research like a parent of a child with special needs.

I have stayed up well past midnight more times than I can count, digging through every article out there, looking for new ways to connect with my child.  From health issues, to education, to social behavior, I’ve read it all.  It’s what I do.

But there is more.

I have knowledge that no one else in the world has.

I know my child.

After reading all of the information that the internet can provide (both valid and complete bullshit), I am as well-versed as a person can be in my child’s diagnoses, but more importantly, after almost 6 years of motherhood, I can safely say that I am an expert when it comes to my child.

I know what will and will not work when it comes to feeding, discipline, safety, and education.

I know that bribery will not work, because there is nothing that my child wants more than doing the thing she doesn’t want to do.

I know that time outs don’t work, but that quiet time in my lap does.

I know that I will probably have to hide veggies in sauces and dips for years to come.

I know that having an escape plan from any public situation is required because my child can only handle so much sensory input before she loses her mind.

I know that my child can not have freedom to walk next to the cart at Target because she will run the second I take my eye off of her.

I know that SPD, ASD, and ADHD are quite real, and anyone who says that they aren’t needs to do some research right after they get their head out of their ass.

I have a team of experts that help me implement the plan we have created to help my child be the very best she can be.  It’s not like I’m just making this stuff up as I go along. Between our pediatrician, specialists, occupational, speech, physical, and behavioral therapists we know that we’re on the right track.  And if something new pops up, I do my research again, and we alter our plan to take care of it.

I love my kids more than anything in the world.

Trust me to know what I’m doing.

 

Why I’m Tired

Someone asked me why I’m so tired all of the time.  At the time, I just said that I didn’t sleep well and left it at that, but the reality is that there is so much more to it.

Why am I tired?
Here’s why…

I am tired because in almost 6 years, Ellie has slept through the night maybe six times.

I am tired because Laurel is a very willful child who knows how to push every button I have.  Having the same arguments over and over again is mentally exhausting.

I am tired because in addition to her pediatrician and dentist Ellie sees seven different specialists, and it is my job to keep track of all of her appointments.

I am tired because every week Ellie has two half-hour sessions of speech therapy, two sessions of occupational therapy, a session of physical therapy, four hours with a behavioral coordinator, and fifteen hours split between two different behavioral therapists.  That’s right 21 1/2 hours of therapy.  Every week.

I am tired because I am now homeschooling Ellie, and most days she’s too tired to pay attention to half of what we do.

I am tired because Laurel wants more one-on-one time with me, so instead of relaxing on the weekend I try to squeeze in as much time with her as I can, which means that I have to cram things like cleaning in at night…the only other time I have to relax.

I am tired because keeping a house even relatively clean while having small children is one of the most futile battles a person can fight, but with therapists in our house 19 hours a week I have to do my best so they don’t call CPS on me.

I am tired because Ellie’s favorite word for three years has been NO.  She has also recently added the phrase “I can’t” to her repertoire.

I am tired because I have to feed a family of four (three of whom can’t have gluten, two of whom can’t have dairy) on a single, small income.  Not to mention pay the mortgage, the electric, and everything else.

I am tired because I have seen every episode of Sophia the First so many times that I can recite them all.  And the Lorax.  And Frozen.  And Mary freaking Poppins.

I am tired because every time we leave the house, I have to be on high alert, making sure Ellie is secure so she can’t wander off, dart into traffic, or happily go home with a stranger.

I am tired because it is my job to keep track of all of Ellie’s medications.  And Laurel’s.  And my own.

I am tired because I’m constantly watching my kids for signs of other issues.  Laurel may have ADHD.  Does Ellie just have Sensory Processing Disorder, or is she actually showing signs of Autism?  Is that eczema?  Not ringworm again!

I am tired because I don’t get enough exercise, and I don’t eat as well as I should.  How do people fit exercise into their schedules??  Also, pass the ice cream. I’m going to eat my feelings while binge watching NCIS.

I am tired because people expect me to be happy all the time, but most of the time I feel overwhelmed and lonely.  Being a mom is hard.  Being a mom of twins is harder.  Being a mom of a kid with special needs is harder still.  But people make it seem like if you admit that, you’re a bad mom.  I’m suppose to cherish every moment.  But some moments suck.  Some suck so bad that I want to hide in the laundry room and cry and never come out.

I am tired because when people ask how I’m doing, they don’t really want to know.  No one wants to hear that my day has sucked.  They have their own crap to deal with.

I am tired because I don’t see an end to being tired.  When I look ahead, I can’t be sure that I will ever get enough sleep, or be able to stop worrying.  Every stage brings new things to stress about.

I am tired because I’m a mom.