A Message to Newly Diagnosed Autism Moms
A Message to Newly Diagnosed Autism Moms
It is hard! It will get harder! There will be days that you just want to curl up in a ball and cry but.... it will get easier! They will make progress! You will be proud of them and yourself beyond your wildest dreams! And you will master at the art of patience like no ones business.
Let me just start out with saying if you think there is something up with your child, don't play the wait and see game. Time is key and early intervention is vital. Denial will do nothing for your child, always listen to you instincts. With that said, heres a little about our experience with autism.
Our journey started when my girl was about 2. Minor, vague things like walking on her tippy toes, always pointing with her index finger, difficulties walking, the flapping of her arms AND legs??? And still not many words. Meh, just a delay, every kid is different right. But as the months went on so did the "odd" behaviors. Lining up of toys, not playing with toys "appropriately" repetitive movements like the opening and closing of doors and still no formed sentences. Being a first time mom to a small child I had no reference at all, but my gut told me something was "off". Enter the realm of the infinite phone calls, questions, medical history, and appointments with every department you can imagine. First was the doctor, then the school district, then regional center, then ABA, then OT, then Speech Therapy, physiologists, audiologists, you name it! All of this multiple times and the forms, damn if I had a nickel for every form! The paper work, the board meeting decisions, the reports, the waiting! And then more waiting! And then finally after it seams like eternity, you get that face to face and the diagnosis. Not sure what the hell it means but it's something, right? That day at the school as I watched my little girl play with an Angelina Ballerina dollhouse and obsess over opening and closing the doors I was told she had Autism "like" symptoms. Any questions Mrs. Cervantes? Um no, how can I ask questions, I have no clue what to ask. I gather my girl who at this point was balling and screaming for being separated with this dollhouse and ran to the nearest Target, praying against all the odds they had that very house. They did! Got home and I broke down, mentally spent and numb.
So began the countless hours of reading, searching and worrying. Then I read some more, it consumed me. I just had to know how, what, why? WHY???? It was the most isolating, lonely experience I have ever went through, it was me against this thing and I had to know how to fix it. Tummy issues, behavior issues, pot training, sleeping, transitioning, lack of communication just to name a few were all hitting at once, like a great big shit storm! How can all of this complex stuff be happening to a little 3 year old girl? Again, why?
Enter Grief, it's a real thing when you get a diagnoses of autism and it will smack you right up side the head, really fucking hard! The loss of the ideas and dreams you had for that precious child all seam impossible when autism is at it's worst. Instead of mommy and me playdates we were about to be over our head in therapies and testing. But you can't let it consume you, you are your Childs only hope! You are their voice, their advocate, their super hero! Tighten up your boot straps buttercup cause it's gonna be one hell of a ride! No time for the what if's, it's up to you to make everything happen from here on out and it won't be easy.
Schools and placement. Woohoo, this will make everything better, right? Ugh not always the case. Autism is a spectrum disorder so finding that perfect place for your kid is no guarantee to be right on the first or second or even third try. These kids are sponges, so both good and bad behaviors will be learned. It's a fine line, do we put them with the peers or with the nuro typical ones hoping they will understand and play nice. Who are we kidding, they are little kids, they too learn from modeling. Sure when they are super little they are blind to differences, but as they grow up... they start to notice. And if something is unusual or different they tend to shy away. Schools can be difficult, always advocate, you now your child best and don't always expect the professionals to think of everything. My girl has been in all types of situations, special day class, partial mainstream and now is fully mainstreamed. She no longer needs OT but is still getting some speech thearpy.
ABA! Oh yeah! If you get it you feel like you won the lottery! That's when you so think things are gonna magically start happening overnight and your baby will finally be all better, ha wrong! First rule of this fight club is, don't ever negotiate with a terrorist! This is where the tough times really start, as demands are made on your child to modify their behaviors (and yours), complete tasks and actually earn things instead of being granted everything to just calm them down. It's a battle of wills, and patients is the golden rule along with a mighty strong poker face. We served 2 years of in home ABA and it was the biggest part of her recovery. It is a huge investment of time but for most children when introduced at a young age, is a game changer, with the right therapist of course. Sample of our day at the height of your therapies: school 8-12 ABA 12:15 to 3 OT 3:30 to 4:30 This was our Monday, now off to cook dinner, shower and oh I don't know have a little family time, HA! The other days didn't include OT but some had ballet classes ( she wanted nothing to do with group activities, she was a solo artist which was distracting to the class). This was 6 days a week at the start, then finally I tapped out and changed to 5 as it was just too much for our family to take. The first year was tough, lots of outbursts, hitting, hair pulling, biting, phones as projectiles. It was as physically exhausting as it was mentally. By then end of our second year, we were making up goals for my girl, after her behaviours were tamed it made learning and communicating way easier. It was a bitter sweet good bye to our beloved therapist, our debt to her was unmeasurable.
Enter Auditory and sensory processing. Wait, what? What now and what the hell is that? Two steps forward, one back seams to be par for the course. Never let your guard down with Autism. Headphones, coping strategies and a million different adaptive tools and we have made major improvements as she is learning to self regulate and use what she needs in her different environments. I will say one major area we only had a slight run in with was her health. GI issues normally go hand in hand with autism as well as picky eating. We dodged this bullet for the most part and only had this issue for a short period of time. Potty training on the other hand, took 2 years to master and by 8 we no longer needed any night time protection.
Fast forward to the present. Time to get social kids! This is said to be the hardest area for our upper functioning kids. It's the gestures, facial expressions, the idioms (um wth is an idiom) the inferences (again wth). Forgot, you learn an entirely new vocabulary during ABA and use it like nothing when you are a seasoned autism parent who knows their shit. Funny how much patience you have and spend on your kids that when dealing with adults you normally have zero left for minor stupidity. Deep breaths! Okay back to social skills and cues and having friends. This is a biggie and a part were are working very hard on. My girl in school gets by mostly by her parallel play and has one solid friend to sit with at lunch but outside of school she doesn't have that daily playmate, the friend down the street, the one that hangs out at her house or vise versa like typical kids. A hobby you say? Tried Ju Jitsu, soccer and ballet with no luck. I will move on to archery and I am looking into theatre classes next, gotta try everything that might work, never stop exposing your kids to new things. This is our reality and it saddens me but it also is my motivation. My girl is sweet, pretty, likes to have fun and has tons of interests yet she is a loner when we are at home. A lot has to do with the fact that we just don't have kids on our street that are age appropriate. She relates better to older kids and is very vocal and social with adults but with her peers, not so much for a girl who will be turning 10, it's emerging but not fast enough for my liking. We have made great strides in this area the past couple years and I can only hope and work hard to get her ready for middle school. I try to keep her very busy on the weekends which has helped her greatly. We did try a pair of social groups without much success as the fit was just not right for my girls level, she was too advanced in most of the areas compared to the other children sadly, again chalk it up to the spectrum.
As for the future, high school, college, a job, relationships and life after I am gone..... It's just too much to process. Baby steps and doing the best I can for her now is all I can do. I am a different person than I was before my girl, it really did shake me to my core and changed me forever. She is my hero, my reason for everything I do and I would do anything for her. We have come a really long way, there were times when I didn't think it was possible to even go out to an amusement park without having to fend off a major meltdown or to simply transition from a ballet class to home without getting kicked in the chest. The most important thing to remember, whatever stage you are at on your journey with autism, it's not their fault! And know the behaviors they are having are because they know no other replacement one yet or have not gained enough language to express what their wants, needs or what their feelings are. You may not even have a diagnosis yet, or just be in the beginning stages. Be strong, ask all kinds of questions, join support groups, whatever you do, don't isolate yourself because you are far from being alone. One last thing, see a mom in destress with her child, don't judge, offer support! Not all kids crying in the aisles of a Target are spoiled brats who didn't get what they wanted. It might be the lights are too bright, the sounds are too loud or there are too many people. This is only the tip of our stories iceberg but serves as a great reminder for myself as to just how far we have come and to hopefully inspire those that might just be starting on this journey. ~Cat