The Firsts of Special Needs Parenting

This morning I read a great article about the “other” firsts that parents go through that we never really talk about.  Things like the first time you realized that you can’t call your mom to fix things, because YOU are the mom now.  And the first time you realize that you aren’t completely screwing up your kid.  Go read it.  It’s great.

After I finished reading, I started thinking about the firsts that we, as parents of a child with special needs, have experienced.  So I decided to share them with you.

The first time a doctor looks at you with concern in their eyes and tells you that there is something different about your baby.  Maybe it happens right after your baby is born, when you are exhausted and full of birthing hormones and pain killers.  Maybe it happens a few months later, when your child hasn’t met any of their milestones yet.  Maybe, like me, it happens while you are still pregnant.  But whenever it happens, you won’t forget it.  The doctor with sad, worried eyes, speaking in low, soothing tones about statistics and DNA and special services.  That sinking sensation in your stomach as the words sink in.  The feeling of rising panic and helplessness as you try to figure out how “bad” things are.  The resignation and determination that follows, as you swear to yourself and your child that you will do everything necessary to help and protect them.

The first time someone asks what is wrong with your child.  And the mother bear inside you roars as you calmly explains that there is NOTHING wrong with your baby.  She is just a little different from other babies.  All babies are different and special.  And you will educate them about the syndrome/condition/whatever that your child was born with, and why it is not something that deserves pity, but that should be embraced.  All while screaming profanities at them inside your head.

The first time your child hits a milestone that you have all works SO hard towards.  Kids with special needs often develop at a different rate than other kids.  Laurel crawled at five months.  Ellie crawled at 18 months.  While we celebrated Laurel’s accomplishment, like any parents would, there was a bit more celebration over Ellie’s.  Because she had worked so much harder for it.  We worked on crawling every day for months on end.  Her physical therapist came every week and showed us new exercises to have her do to help strengthen her naturally low-toned muscles.  Mostly Ellie hated it.  She cried.  I cried.  Laurel cried in sympathy.  But one day, right around Christmas of 2011, she crawled across the floor from Chev to me.  And we all cried again, but in happiness.  Laurel danced around us, clapping and cheering for her Sissy.  It was a very good day.

The first major setback.  At some point, you will think that you have this whole special needs parenting thing under control.  Your kid is progressing along in all major areas, a couple of your specialists have told you that your kid doesn’t need to come back, and you are flying high. That is when it happens.  Your kid suddenly stops talking or eating or walking or starts screaming whenever you get them wet or pick them up too fast or dress them in anything scratchy or they get really sick and no one can figure out why.  And suddenly you are back at a new specialist’s office for a new round of tests, or you are meeting with new therapists for evaluations.

The first time a doctor tells you that you don’t need to come back to them.  Specialists are just part of life when you have a child with special needs.  For us, it has been pediatric cardiologists, eye doctors, ear nose and throat doctors, gastrointestinal doctors, and bone doctors.  The first year is a relentless round of appointments, tests, and observations.  But one day, one of the doctors will smile at you and tell you that your child doesn’t need a follow up appointment, and that unless you notice something else that pops up in a few years, they don’t need to see either of you again.  And you leave the office with a bit more spring in your step, mentally checking off a little box in your head:  GI issues….DONE!  And that feels SO good.

The first time you realize that you have GOT this.  One day it will hit you that you really do have this whole thing figured out.  You are an expert in whatever special need your child has.  You can spew off the list of doctors, practices, therapies, and medications that your child is seeing, doing, and taking.  You know who to talk to at the state or county government office that will actually listen to you and try to help.  You know what an IEP is, and have faced down the school board at least once.  But that none of that really matters.  What really matters is that you have learned to put all of that stuff aside and just play with your child.  We can get lost in the red tape sometimes, but one day you will realize that the most important thing you can do for your child has nothing to do with which therapies they receive.  You will find yourself sitting on the floor, playing with trains or stuffed animals or stuffed animals riding on trains, and you will realize that THIS is what it means to be a parent.  Not a parent of a special needs child.  Just a parent.  Because that is what you are.  And you will grab your little one and hug them close (whether they like it or not), and tell them that you love them, that you will always love them, no matter what.  And they will look at you like you are crazy and that is ok.  Because that is what all kids do.



8 thoughts on “The Firsts of Special Needs Parenting

  1. I hate the school board. I hate the condescending nature they treat parents of special needs kids. I hate that they care more about saving funds than your child.

    Anyway great article!! I also remember the first time parents didn’t want to have their kids be friends with mine because he was different. Like it would catch. That is a sobering nasty little experience.

    • That is terrible, Katt! We haven’t had anyone turn Ellie away as a friend yet, but she only goes to a special ed preschool, so we’ll see what happens in a couple years when she hits main-stream school. Not really looking forward to that.

  2. As a parent with older special needs kids I can add one of my own: The first time another child takes up for your child when they are being bullied! Being bullied is a hard fact for children with special needs… as long as there are people there WILL be bullies at some point but a couple of weeks ago my son shared with me that he had a kid to not only just stand up for him to the bullies but the kid talked to him about how he can deal better with bullies and it was genuinely helpful for my son since he has Asperger’s and misses so many social cues. When Connor shared this with me I cried tears of happiness because in all of his 14 years, this was the first time this had happened. I was happy and I was excited and there was no better feeling on that day! 🙂

  3. I love this post. So much! You get pregnant and you think it’s going to be so easy. Of course you are going to have this perfect little baby. And then real life sets in. And it’s scary and hard. And you spend your time fighting for this perfect little baby. Fighting so they will have a perfect life. I remember when I learned that Cooper had special needs. I am still learning to accept. This is a great post!

  4. My heart goes out to you as a mom with Marfan’s syndrome who was diagnosed via her child while pregnant with number two society is the biggest challenge. But she’s 15 now and when she’s asked about some of the physical differences she educates people. All I can say is it gets easier and sometimes scarier but your kids have an awesome mom.

  5. I’m sure that your girls make some awesome friends over the years. Not everyone discriminates against DS or other disabilities. Some do, for sure. But there’s a lot of awesome kids out there who couldn’t give a damn. My daughter’s best friend has severe CP and communicates through a speech device. She asked to have her friend “B” over for a play, told me about him for a solid hour, and didn’t think to mention he’s in a wheelchair! (no big deal, just had to re-arrange a few bits of furniture to give him more room when he visits 🙂 ) .Her other good friend has Aspergers. My son doesn’t have any friends yet, but I’m hoping he will do well once he’s school-age.

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