I Don’t NEED Your Comment or Criticism.

If you’re wondering who I am, here is a link to my Introduction Post! I’m still absolutely thrilled to work with 5 minutes for special needs.

We’ve all been there before. There are people ALL over the place that will question your parenting and give you unsolicited advice. I feel that I get MORE comments and advice now, that I have a special needs child. It gets really annoying when even family asks you “Well, why doesn’t Jillian eat? She has teeth?” I often wish I could respond with “Why doesn’t Jillian walk? She has legs!” But then I realize I should just be the bigger person and try to educate. That’s my goal for my OWN personal website as well as writing here. There are so many stereotypes that I just want people to have KNOWLEDGE!

Shortly after Jillian was diagnosed, I began telling people about her diagnosis. (I waited about a week, because I needed time to  pull myself together and gather my thoughts) I told one of my friends that Jillian had Cerebral Palsy. Her response? “Well, she doesn’t look MENTAL” Wait. Back up the train. I know that you’re not from Canada and your first language isn’t English, but really? That’s uncalled for. At first, I got really angry inside. Then, after gathering myself, I explained that Cerebral Palsy isn’t classified a MENTAL condition. In reality it’s a blanket term for a PHYSICAL condition. (although there are some cases where there are cognitive issues with Cerebral Palsy)

When we finally received Jillian’s wheelchair, I had taken my kids shopping. Jillian fell asleep in her chair and her head lulled to the side. This woman came up and said “YOUR BABY’S HEAD!” I said “I know she’s asleep like that, but if she’s uncomfortable, she’ll move” (at this time I didn’t know how to tilt the seat) she told me that I was neglecting her and she should call Child Protective Services on me. I really should have given her my phone number to expedite the whole procedure.

For the past two years, we’ve been helping Jillian’s doctor train med students. The first year was really good. The med students even asked me at the end what they could do to communicate with parents better. I said “if I walked in here, saying ‘My kids legs don’t work good’ you should dumb it down. If I walk in here sprouting medical jargon like spastic diplegia cerebral palsy and periventricularleukomalasia, then, you should feel comfortable talking to me using medical terminology.” In ALL children’s cases, the PARENTS (and siblings) are your best ally. This year? The med students looked at me at one point and said “What’s WRONG with her?” Lauren piped up with “nothing” And then proceeded to ask me if I drank and did drugs while pregnant to cause my premature rupture of membranes. Really?! You couldn’t have found a better way to phrase that!? I was APPALLED!! As if I don’t carry enough guilt for not carrying Jillian to term. Their final question really shocked me. They asked if Jillian had any neurological problems. Thankfully her doctor was in the room and piped up on my behalf. I REALLY hope they learned some bedside manner that day.

Even Lauren gets her own set of criticism. Lauren will be 4 in January and still wears diapers. I really wasn’t worried about this, but I heard a lot of  “you’re a terrible parent, she’s too old! you should have her potty trained!” I finally asked Jillian’s pediatrician how he felt. He said “You need to realize Lauren is going through an adjustment period with Jillian too. Having a sibling with special needs and not being able to express herself adequately, this is something she feels she can control. She’ll potty train on her own time” Phew! I wasn’t crazy! I was doing the right thing!

So, if you happen to come across a special needs parent, don’t tell us you’re sorry. We’re happy that our children are in our lives. Don’t push unsolicited advice on me, if I need help? I’ll ask. And last but not least? Don’t make assumptions about medical conditions. Ask questions- most special needs parent will answer any questions, even if you think your question is stupid.

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