So here you are.
When we found out Elijah had High Functioning Autism (at the time it was still classified as Asperger syndrome), we were relieved.
We were finally able to put a name to all the behaviors he was exhibiting.
We were finally able to find specific treatments for him.
We were finally able to breathe- or so we thought!
Although, we had a starting point to look for information, it soon became a lot more overwhelming than I would have ever expected.
Whether your little one was recently diagnosed with Autism Spectrum Disorder, or you are a seasoned Autism mom (or dad), this letter is for you.
Dear (new) Autism Mom,
Welcome to the world of crazy!
Your life will never be the same from here on out. It will be filled with tears, anger, frustration, laughter, and love. Pretty much everything parenthood comes with. But this one diagnosis will elevate parenthood to an entirely new level.
You will cry more than you did during your teenage years when you realized puberty sucks! So stock up on Kleenex. You WILL need them.
Make sure you keep enough paper towels on hand. Just in case your child decides to eat a food and finds out they HATE the texture and projectile vomit all over your dining room.
While we are on the subject of food, be prepared to hear things like:
- “They will eat when they’re hungry.”
- “My little one was a picky eater, too.”
- “In my day, we ate what was put on our plate. If not, we’d starve.“
- “I wouldn’t cook special meals.“
- “What a brat! They should eat whatever you make.”
Food, dietary information, awareness of textures, smells and just the way food looks will take over your dinner plans. This so-called picky eating and autism go together like peaches & cream! So, stock up on multivitamins, if your doctor suggests so, just in case your little one only eats 4 different foods for months on end.
Fighting with people who consider themselves specialists will most likely become the norm. So try to arm yourself with as much information as you can. And don’t hesitate to question anything you feel just doesn’t feel right.
Your intuition will kick into hyperdrive! Trust your intuition. It will become your best friend.
Consistency is KING!
You will find the craziest and most awkward places and positions to soothe your child. Be prepared to lie in a corner of a store with your arms and legs wrapped around your child, applying as much pressure as you can without hurting them. All in an attempt to soothe them by creating deep pressure to their body.
Grocery stores, museums, malls…people are everywhere! So be prepared for stares and looks. Which pretty much means to get ready to familiarize yourself with hot flashes and blushing way before your Menopause years. Because you will worry every time you leave the house and come in contact with complete strangers that YOU are doing something wrong.
So, the first few months of diving into Autism mom/dad mode may be filled with situations in which you feel embarrassed, for lack of better words. Those stares and looks I mentioned earlier? Yeah, they will pierce right through you and heat your inner core while you’re trying to soothe a 65 pounder in the middle of the pickle isle, because a person’s phone, 5 isles down, rang. And it doesn’t help that the ringtone is this high pitched, old-school alarm clock sounding ringtone.
But to the untrained eye, it looks more like you’re fighting a spoiled rotten brat who didn’t get that piece of candy hanging on one of those plastic hangers in the middle of the isle in the most random place!
Be prepared to develop a thick skin, physically and emotionally. You may have to prepare yourself for the ever so sneaky fist or hand that will hit you in the face or some other sensitive area while your little one is experiencing total sensory overload and doesn’t know how to cope.
Society expects our children to be perfect by the time they unlatch from the boob, or bottle! (No judgment here!) This applies to neuro-typical as well as special needs children. So, be prepared for everyone under the sun to tell you exactly what you should do to discipline your child. Because all the child needs is either a good butt-whoopin’, or a 5 hour long time-out!
There will be times when all you do is question everything you have ever done, said, read, heard, and discussed with others. You may question your own abilities. But don’t let that overcome you.
You will eventually get mad and yell. But it’s OK. It happens to the best of us! You will feel bad about it, but what can you do? Move on!
Unless you are Superwoman, Elasti-girl and Wonder-woman all in one person, your laundry WILL suffer a long and agonizing wait in laundry baskets before falling victim to what I like to call the laundry shuffle. Oh and by the way, that great big 80 gallon soaker tub you fell in love with when you bought your home? Yeah, it’s probably better served as a laundry hamper.
*A game in which the mom catches up on the laundry and is too tired/busy/dirty/hungry/etc. to hang them up, so they stay in the basket and move from one area of the room to another.
Did I mention you will want to cry…A LOT?
You will feel helpless. And no matter what you do to accommodate your little one, it will never seem to be enough.
Tiredness and exhaustion will replace your middle name. It’s a combination of physical, emotional and mental fatigue that consumes your every day life. But it will be OK. Because with the proper self-care and self-awareness of your own emotional and physical states, you could manage just fine. But having the ability to stop or slow down long enough to recognize this, will be one of the most difficult parts of your journey as a special needs parent.
Oh, and you should probably familiarize yourself with these:
- IEP (Individualized Education Plan) – check out this guide by the Department of Education
- DSM (Diagnostic and Statistical Manual of Mental Health Disorders)
- ADA (Americans with Disabilities Act)
- FERPA (Family Educational Rights and Privacy Act)
- IDEA (Individuals with Disabilities Education Act)
- Rehabilitation Act
- FAPE (Free, Appropriate Public Education)
- LRE (Least Restrictive Environment)
Learn how to go about your day without apologizing. You may get in the habit of saying things like: “I’m sorry, but my [child] is autistic. He will lose it if you put pickles on his burger.” I’ve done this for the longest time. And, in all honesty, still do sometimes. But I’ve learned over these last 2 years that I don’t have to apologize for my son’s special needs. If he hates pickles, then he hates pickles. And if I’m paying for you to NOT mess up his extremely simple order, then the least I should expect is a correct order!
Never apologize for your child’s special needs.
Prepare to either lose friends, or if you’re anything like me, find it extremely difficult to make new friends. Because it seems like having a neuro-typical child is just overall so much easier to deal with. So, why surround yourself with someone who has to raise a child with special needs, right? On the other hand, prepare yourself to find some of the most loving and supporting people. People who will understand that last minute cancellations of play dates and mommy-outings are simply part of your life. People who will understand that you may have to pack a suitcase worth of items for all the ‘just-in-case-my-child’ scenarios.
Be prepared to argue and debate the Autism diagnosis with family members and friends. There is always that ONE person who wants you to get a second (third, fourth, fifth) opinion. There will always be that ONE person who will say: “We didn’t have this autism stuff back in my day!” Oh and the ever so lovely: “They just need their butt whooped and disciplined.” But that’s OK, because one day you will be prepared to answer each and every question. And you will be able to show that many autism myths have been debunked!
(To start your Autism Myth Busting Journey- check out my 3-part Autism Myth series)
Regardless of what happens. No matter how difficult this new journey will become. And aside from the constant tiredness, lack of self-care (it’s a work in progress), and the occasional (or not so occasional) arguments and disagreements with the significant other, family, friends, doctors, teachers, and specialists. The journey as a special needs mom -or dad- can be one of the biggest blessings and most heart-warming experiences you will ever encounter.
I was only 21 years old when Elijah was born. While I have always been quite the ambitious young woman, this tiny human has taught me so much over the course of his short life. I always thought that the parent is supposed to be the teacher. But in many ways, Elijah has been a far better teacher than I could ever be. He has taught me humility. The importance of self-care. How to strive for my goals, regardless of how difficult it may be. He’s taught me to appreciate even the simple things in life. And above all, he’s taught me how to love unconditionally!
Dear (new) Autism mom. Good luck. Stay strong. Continue to live life. Try to practice as much self-care as humanly possible. Allow yourself to cry and get mad. Connect with other special needs moms. You are not alone. And never forget to love yourself!
A fellow Autism mom
I truly hope that this letter spoke to you. And if you know a new Autism mom, please feel free to share this with her!
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