Its the year 2020. Many of us have been some sort of locked down since March. In our home it was March 13, a Friday, the last day my daughter attended traditional school.
My daughter is amazing. She’s fun. She’s beautiful. She’s creative. She has taught me more in 7 years than anyone else in my entire life.
She also has autism. Its part of her and it impacts her to the point that sometimes she’s unable to function, sometimes she’s unsafe and she’s in need of support. Always.
Within the first few weeks of our “lockdown” here in New Jersey, although she had two parents and four siblings around, always, she managed to shave her head and break her collar bone. She also had episodes so painful, with behaviors towards others, I can’t begin to put them into words.
My daughter needs school. She thrives with structure, with knowing what happens next and feels safe on her daily schedule which typically includes school, ABA, OT and Speech. My daughter is one of the hardest working people I know.
On March 13, however all that she knew, anticipated and expected changed. Her behaviors were communication. She was frustrated and scared. She didn’t know how to tell us how she felt so she showed it in her actions.
After the shaved head and broke collar bone, I knew I needed help. Help with teaching her, supporting her, keeping her safe and so once again, I looked to ABA Therapy.
It is no secret if you know me I have had good experiences with ABA and we’ve also had experiences that would make someone shy away from ABA altogether so when I received an email from someone I do hold in high regard, someone whom is #actuallyautistic (their words not mine), I took their view to heart and wanted to share our why. I don’t feel I need to explain myself to them or or other people with autism or to try to tell them they are wrong but to educate them on why ABA can be right and why it is right for my daughter.
As a parent, you always are looking for ways to support them. For my other kids I do that through sports, extra curricular activities, friendships but with Seraphina, her support looks different. The support she thrives with is ABA. Done well, ABA will open doors for many children. For us, its not only taught her academics but safety. ABA has taught her to trust adults and to accept correction. ABA has helped her to learn how to have reciprocal conversation, to identify who her parents and siblings are and even know where she lives, all key factors in helping her to survive and one day thrive.
I understand that many of those who live life daily with autism, feel this is abuse. They have said it. I hear you and acknowledge your feelings and no one can tell you a feeling is wrong. However, I do not see ABA as many have said they see it as parents looking to train animals or we as parents who choose ABA are simply not loving our children where they are. To those people, I am loving my child so much I want to teach her how to be safe, how to learn, how to live and survive in our society. Mostly I am teaching her what she needs so she can be happy.
My daughter LOVES her ABA therapist. When she isn’t here, she is concerned. She misses her. When I look at them, they aren’t therapist and child, they are like family. They love each other.
To those who are #actuallyautistic, I am not negating how you feel or what you believe but asking you to consider what is right for you may not be right for others. Life is a journey. Its messy. Living a life as a neurotypical person or one who is neurodiverse is unique. We all have our own journey and will need support in unique ways. For us, for Seraphina, its ABA and if someday it isn’t, we will make that change because like your parents did, we love our daughter and want to see her be as successful as she can.
A few weeks ago, I posted a blog about exactly what to do after you have learned of your child’s diagnosis, you can find that post here. Its a bit overwhelming and once you pull yourself out from behind the curtain of sleep deprivation and emotional exhaustion you need to do something very important. Find Your Tribe.
At first, your friends and family will be there. Emphatically. Supporting you. Hanging on your every word and asking how they can be there for you. You may have friends that will want to help, give you a bit of respite, but in time, autism will be a big part of your life. It will envelope who you were. It will change you in ways you never expected and while those friends and family members will stand by, unless they too are living it, they won’t completely understand. Ever.
You have entered a secret world where you and your family will experience things you only read about. You may be in shock you are living this life and putting your feelings into words may be overwhelming. In fact, parts of this secret world, you may be embarrassed to share. This is your new normal. Your once busy, bustling family will still be just as busy but in between your typical children’s sports and lessons you will be headed to occupational therapy, speech and even physical therapy. The home that kids once ran through all summer long, where children rushed in for lemonade and cookies will now be different. Children may not show up as often and perhaps you will fear inviting them over.
Reality is, those first friends you had, before the diagnosis will be there. They will listen, some will even try their best to learn pouring over books, texting and reminding you you are not alone but be careful because they may tire over the number of conversations about therapy or school or your expectations not being met. They may not understand the moment of celebration that your child is finally sleeping through the night, at 7, that your child had a reciprocal conversation at 9 or perhaps your child stopped being so aggressive and began using their words. Its not that they don’t care or want to care, they aren’t card carrying members of Mothers like us.
Sometimes, they feel guilty. Most know their lives are different. Some may even feel badly for you and not know what to say. They are still your friends, but once your eyes are dry from crying, you have found your voice to advocate and you are no longer standing on shaky ground, find your tribe.
For me, its happened. I found a group of moms living life with autism. We have one single thing that bonds us and the conversation about elopement receives nods of understanding, the tears of aggression receive words of comfort and the celebration of an experience in a typical situation is met with a joy only a mother who has spent countless hours sitting through therapies, doctors visits, titration of medication would understand. Not only does it feel good, it will help me not to burden my friends and family walking a more traditional journey to hit the F-U button when I call for fear of my lamenting the struggles of the day.
Last night on a whim, I decided it was time. To speak, so as I jumped on a call with a group of women, I spoke candidly about our journey. As the comments popped up in the chat box, others understood. They too lived this life. One even said I was speaking her language- I think its the “exhausted, overwhelmed, autism mom speak that I spewed a mile a minute in case my daughter woke up” language that is just now being put into Miriam Webster Dictionary. This world we live in sprinkled with autism isn’t bad but its one that can be heavy. Each of us is learning constantly and without a tribe, its an incredibly lonely place. While I talked long after my bedtime I felt at peace. Today, when I woke up, I was rejuvenated. I felt more alive than I have felt in months and it felt good. If you have yet to find your tribe, let me know, I’ll direct you and you can join me there and feel whole again.
Since the moment we learned of your presence, we were thankful. While unexpected, your life was a blessing from the start. You have taken us on a ride we never expected and while I prefer a straight, narrow path with no blinders, the journey the has been placed before us with ups and downs, twists and turns keep us on our toes and the edge of our seats wondering just what will happen next. Your seven years have taught me so much, so perhaps while we lament the struggles and challenges, we can also take time to celebrate the gifts you have brought into our lives. While I cannot name them all, you have been the single person to change who I am and I am certain you have done that for others around you.
You have taught me compassion. While we have experienced others looking down at us, judging us, misunderstanding us I have learned what it feels like to suffer at the judgement of others. That in itself has taught me to be more compassionate. Not just to parents of children who struggle but to everyone. I have learned that I don’t know the struggles other face, the lives they live, the journey they are on. I understand that my view may be different, it is not always right, that compassion trumps judgement and perhaps a warm smile, gentle hand or moment of listening can help others, and I may be able to be the angel I have needed in dark moments of my life.
You have taught me to be more content. Your path is different, its slower and unlike other children who may rush through life from one place to the next, wanting more, needing more, you are content where you are and with who are. Its also never been something I have been comfortable being, content, I have been the person to rush to want more, to need more but reality is, more doesn’t make us happy, I am learning from you, to be content. Now. Here. In the present moment.
Serahpina, you have taught me patience. Sometimes the best things in life are worth waiting for, I had heard it and read it but didn’t believe it. As we walk along side you holding your hand, we do our best to give you what you need and we learn to wait for you to grow in your time. On your journey we stand beside you and will work tirelessly and wait for you to blossom as you can.
You have also taught me to see the beauty in the world around us. While you travel life’s journey at your pace, you see things in a way I never did. I experience the beauty of our world as you discover it. You are now able to share what you see around you and engage others to join you.
Seraphina, all those who witness you see your tenacity, your desire to learn you continued push to grow. You work tirelessly to learn in ways others will never understand. You teach all who are around you.
This Thanksgiving season as we look around, its been a challenging year and while there is so much to be thankful for, I am thankful for you each and every day. I know life is not easy, this path is not paved but we will walk it together and I am fairly certain that while mothers are supposed to teach their children, you my child have truly taught me.
There are some words a parent is prepared for however even when a parent knows that their child may in fact be different developmentally the diagnosis day can be much a day when you sit hearing the words, but processing is more like what Charlie Brown heard from his teacher. It may take time.
The first ride home from our specialist I sobbed. I knew my daughter had autism. I actually fought to get her diagnosed at a young age because as number 5, I was aware she was very different.
Once the tears dried, I imagined I’d call our Insurance Company and we’d be good to go with the best therapies, ABA, OT, Speech and by Kindergarten we’d be in full inclusion and I’d be one of those stories that other people would hold tight because we’d give hope.
Our story however took a path I never expected and after hanging up with Insurance hearing only denial, I had no idea what to do. I wish I had someone to say first, next, then…so today after seeing a similar request I decided it was my turn to give what I needed with hopes it may help someone.
First, mourn. Its okay. No one chose a path of a child who needed additional supports. I used to say “we don’t care what gender our baby is we are praying for healthy and if we can’t have that we are praying we have friends and family to support us”. Truth be told, I said it but never anticipated I’d be calling on those friends and family to lift me up when standing seemed too hard. The day after we were diagnosed I told someone “I need to mourn the child I birthed, it was if she was gone, but I also needed to welcome the opportunity to love the child I had”. So mourn. Its okay. Take the time you need but realize after like the famous poem “Welcome to Holland” by Emily Perl Kinglsy says “And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.” there is beauty in this journey. You will find more love than you can imagine, and more beauty than you can ever expect–but first, grieve. Its okay!
Next, find someone who has done this before. Even if its not the same diagnosis, find someone to direct you on the path that will give you the greatest supports. For me, I called someone who lived it in my town and she had been waiting for my call. She saw it in my child but no one wants to say “hey your child…..”. Even if you are not friends per se, its almost guaranteed if they can emotionally, physically, spiritually can be there for you, they will. You have now been inducted into the most fierce club you can ever imagine. No sorority hazing could get you into a club like this. This is your ride or die!
Once you are showering on a daily basis again, it time to dig in. Remember that friend? She told me this was a marathon. I’m feeling more like an iron man but you get the idea. Rome wasn’t built in a day. Your child’s services, teams, medical doctors and medicine (if you choose to go that route) will take time to sort out and adjust. Its okay. Don’t panic. Just continue to love the child and it will be okay.
Third, its time to call insurance. For me, it was a disastrous call that lead to me contacting my husbands HR Representative, then searching the internet for higher ups and I first saw the “Mama Bear” in me that everyone talks about. You know, the crazy, tattooed autism mom that is me…when it has to be, and it may have to be you. Its okay. Fight. Get what your child deserves. For me, the journey to insurance took nearly daily calls to the HR Representative, a few meetings with Congressmen, a trip to see Cory Booker’s Office and a local Senator too. I wasn’t backing down, not for my daughter or anyone else’s child that came behind me. You can read about that journey in The Care Gap featured in New Jersey Monthly from February 2020.
While insurance is getting themselves together and learning what numbers you call from, start on the process of understanding the benefits your state may have. Each state is unique and different diagnoses will have varied supports in place but don’t be “too proud” to say you need this. You may not but choose to get coverage and if you don’t use it, that is your choice but very rarely does a child “lose” a significant diagnosis. So start getting help now. In New Jersey, we have what some call PerformCare. At first I feared this. I didn’t want judgement of social workers or support professionals but I will tell you if I had swallowed my pride and done it Day 1, my life would have been better. For us, we qualify for respite services, camp and also some local supports. To begin, you will need to call. They have professionals on call at all times and its okay to call when its after hours, we know many of us are up at all hours. For me, the page that had the most information that was pertinent for me was the Intellectual and Developmental Disabilities page. It has a brief video and links to what you need to apply and get your child’s eligibility. Before you begin, I’d gather ALL the information you have on your child, their disability, any evaluations, insurance information you will need copies of them all. I found it easiest to scan them in print them and have copies saved as a PDF file in case they were misplaced or lost. Also, I recommend when sending them you get notification or receipt. If you are not at first qualified, don’t give up. Try, try again! It took me two passes to get my daughter qualified and if you had asked anyone who knew us or knew what we were going through they would have thought we were joking.
Slowly things will fall into place but once everything is applied for, you are in the waiting game. Don’t forget to contact Early Intervention if its early enough, yes, the call is tough but so valuable. Some of our Early Intervention Staff has become so close they know my children better than family. If your child is over age 3, send a letter to the school district in writing immediately requesting and evaluation and give a call. They will guide you. Schools know the earlier they can get to your child, the better they will be in long run so most schools will do their best to evaluate quickly, however here in New Jersey they have up to 90 Calendar Days, and the Resource “Special Education Process” may help you out on this journey! Don’t forget that friend either. I almost wish with the diagnosis they gave a “Buddy” like a Big Sis in a sorority! They don’t, so start your own sorority. Don’t try to reinvent the wheel.
Finally, get support. While you will find yourself spouting acronyms and talking medical jargon more than ever while your friends want to support you, they walk with you not on the same path, so, find people on that journey. Look for local support groups, for me locally, I love Greenwich Autism Alliance or you can join virtual ones too! Personally I am a member of Coop’s Troops and I find a lot of support there!
Remember, you are not alone. The best advice I have ever gotten on this journey, was from my husband, as I sat sobbing in one of those hard to handle moments he held my hand and told me to just take it day by day. When he saw the look in my eyes he knew I couldn’t take it day by day so he told me to take it hour by hour and if that doesn’t work, minute by minute and if that still doesn’t work, second by second and if you can’t do that, just breathe.
Nearly five years ago I started to see the signs. She had slipped away from me. Into the abyss we learned to call autism spectrum disorder. While people diagnosed her, classified her, tried to help me help her, I began to spiral.
I was lost. I was out of control. I put a halt on what I loved, what I enjoyed and decided to drive myself and all my desires into helping my child. I had been told “if anyone can, you can” so with that mindset I dug in.
Finally, getting myself enough training to be her person, the one who saved her.
Really, I needed the saving.
I haven’t had a perfect life. No one does but five years ago, I didn’t just lose my daughter, I lost myself. Within years I alienated friends. What was there to talk about autism? The stress? The pain? The fact that it just wasn’t fair?
By last year, I became a shell. Consumed by fighting. Equality. Rights. Disability. Its all very important and I still long to know as much as I can and to give what I can not just to my child but to all those living with neurodiverse diagnosis but to do that, I have to find me.
Who am I? To say I don’t know anymore is an understatement but a couple weeks ago, it clicked. I am still in her. The writer. The reader. The mother with a passion for umbrellas in Saturday lunch, just because or the stupid little things like driving through the night, hot cocoa in hand looking at Christmas lights. She’s still there but for the last five years, she’s been masked.
A couple weeks ago, I began writing again. Its cathartic and I have heard from more than a few people, it helps others and truth is, I like to help others. I began to focus on exercise. Who doesn’t need that and then this week I decided to give my kids what they really want, not the mom that is running here or there to change the world, they need me. So what did I do?
I scheduled appointments.
My First Mammogram.
I’d be lying if I said I wasn’t scared. I am. I’ve gained weight. I have let myself go. I have gotten lost in what wasn’t fair instead of seeing what was good. So, to start again, I must start with myself. I urge you, Moms, ALL MOMS, not just moms of multiples, moms of toddlers, moms of children with additional needs, find you again. Start by making sure you are healthy. Start there and then, begin to find what makes you smile, what warms your heart, what keeps you laughing because you are worth it and reality is, your kids love you, need you and want you. For a long time.