What it’s like being the mother of special needs children…
It’s endless meetings with numerous professionals to have plans written up and approved.
It’s the frustration of spending hundreds of dollars and hours on creating plans that don’t get implemented properly, or at all.
It’s creating a non-profit organization to bridge the gap of limited resource availability in a rural community so your children (and others) don’t miss out on opportunities to help them thrive.
It’s writing grants to fund programs for people you don’t know.
It’s developing awareness walks, campaigns and training programs so that your community can be set up to support all of its members.
It’s learning to navigate an extremely complicated system, then supporting others so they don’t have to do it alone.
It’s feeling like you have mastered autism just to wake up to a whole new set of challenges.
It’s constantly advocating on their behalf when professionals are not adequately trained.
It’s being hated by people who interpret advocacy as personal attacks, when all you are trying to do is speak for your kids when they can’t do it themselves.
It’s the expectation that you’ll sugar-coat the issues you need to raise with professionals, even though they don’t do the same for you.
It’s balancing the feeling of others working with your children while trying to ensure your children receive the best available services; a balance I will spend a lifetime working to achieve.
It’s the expectation that I praise professionals for their good work, when I can’t remember the last time someone said that to me.
It’s fighting with sports agencies to make accommodations to adapt programming for your child.
It’s giving up when the fight doesn’t seem worth it.
It’s sitting in meetings with people who don’t understand and listening to what you as a mother can do better, being told to “read to them and speak to them so they will speak.”
It’s receiving an autism diagnosis and being relieved that it wasn’t a lack of reading to them or speaking to them that caused their learning delay.
It’s the constant feeling that you could be doing more for them.
It’s psychiatry appointments to make sure your head is where it needs to be for your family.
It’s being prescribed Ativan and tranquilizers for the days that you feel like you are drowning and cracking under the pressure.
It’s taking course after course to become educated enough to have a say and keep on top of new research and therapies.
It’s lying awake at night worrying what the future holds for your children. It’s feeling jealous, at times, of other parents who have typical children.
It’s cringing when those parents say they “understand” and they “have been there” – when you know that they have absolutely no clue.
It’s envying those parents who drop their kids off at school or sports events with a quick goodbye, wave and “I’ll be back to pick you up.”
It’s somehow finding time to maintain your mental health, dating and social life all while hearing the whispers of other people who feel inclined to pass judgments on how you chose to do that.
It’s being annoyed when other parents complain of their children’s “meltdowns” when they have never actually experienced one.
It’s being in a constant state of thinking ahead, planning and foreseeing signs of a meltdown before they happen.
It’s the guilt that happens when you miss these signs and must watch your child melt down. It’s trying to ignore the judgmental stares of other parents when this happens.
It’s trying to make professionals see your children’s behavior for what it actually is, symptoms of their neurological disorder, and not just some kid who is bad and doesn’t listen. Although that can sometimes be the case.
It’s knowing the difference.
It’s staying up most nights to make creative visuals, schedules, and reward systems so your children can better view and understand their world.
It’s trying to convince yourself that you don’t care what other people think of you, then crying on the bathroom floor after a meeting when you realize you do.
It’s having to take leave from work so you can be available when receiving the multiple calls a day from the school to come pick up or manage your child.
It’s trying to utilize autism funding. Contrary to popular belief, it isn’t an easily accessible pot of cash readily available to use at your leisure.
It’s listening to some parents say things like “must be nice to have an autism diagnosis and have funding.” $6000.00 a year to help cover the cost of a behavioral interventionist, behavior analysis, a speech and language pathologist, occupational therapists and many more specialists, costing upward of $100 an hour, isn’t something that I believe falls under the “must be nice” category. Accessing this funding is a part-time job without pay on top of that full-time one you already have.
It’s filling out form after form after form, scanning, signing, emailing, following up with the team to make sure they have signed everything and will send it back.
It’s purchasing equipment and then more forms, emailing …
It’s trying so hard no to judge other parents with special needs kids who have their heads in the sand and do very minimal to support their children. The options, in my opinion, are either you as a parent suffer at times, or your kids do; it’s that simple and complicated. I 100% chose to take that burden from my children every single day.
It’s getting your children from school to lessons so they can learn what others are born knowing.
It’s seeing the world through the eyes of someone who sees and hears things on a level most people will never understand.
It’s being shown love on the most passionate level.
It’s hearing the “I love yous” and the hundred kisses a day.
It’s having the luxury of experiencing the love on a level that most don’t.
It’s the pure joy of looking into the eyes of a child who depends on you and trusts you fully.
It’s witnessing a type of innocence that has never been seen before.
It’s having family pull together to create a village for these children.
It’s being fortunate enough to have friends to call on a bad day.
It’s creating unforgettable bonds with other special needs parents who get it.
It’s remembering that someone else has it worse off.
It’s the appreciation of working with that one behavioral analyst who works so hard and tirelessly to help support a child who isn’t theirs.
It’s being grateful to have the capacity to cope and support your children.
It’s the feeling of satisfaction at the end of the day, knowing you’ve done everything possible for your child.
It’s the ability to have a unique perspective and an appreciation for things that parents of typical children take for granted. With all of the many challenges, there are also incredible benefits, and I wouldn’t change a thing.