Getting Through the Holidays, Autism Style

The Christmas I Knew We Had to Make Changes to Make Christmas Happy

Every December as we decorate the tree, I wonder just what Christmas will look like for us. I remember seasons of beauty. Trips to the zoo to see the Christmas Lights, bundling into the car with hot cocoa and marshmallows, driving around to see the lights. I envision my husband’s work party that the kids delighted in the Jolly Fellow joining them as they visited and told them their wish list. I picture sleepy eyed daddy as he is just as surprised as the children as they open presents. Those memories are treasures. For us moms, some of our best moments are the ones where we see our children in awe of what “Santa” brought and the feeling of satisfaction knowing that you made their day special.

For us, this was my favorite time of year but then, it changed. As I looked through photos of the holiday’s of the past, I realized that the Holiday’s, since autism brought with them a sense of stress I had never experienced before it entered our world. I still remember the Christmas I realized this. As my older children pushed gifts into my youngest daughters hands, she stared off into space, left the room and felt overwhelmed. It was apparent to me that things had to be different so that we could still make memories, good ones, no matter what.

Knowing that the holiday’s coming our way would look different I still acknowledged that I had four other children that deserved the magic they dreamed of and so I had to choose to do what was right for us. Perhaps these ideas may in fact help you.

First, set boundaries. The holiday is a season. With our children we prepare by trying to clear our minds and hearts. We work to do for others. During the beginning of the month, doing small things with great love tends to warm our hearts and often reminds our family of what the season is truly about. Remember, while the holiday season is magical you need to hone in on what is most important, your family. Your children. This means that it you may have to set boundaries. Boundaries can be tough. You can feel overwhelmed saying “no” but sometimes saying “no” is the gift you give yourself. If your child struggles outside the home or transitioning from even to event, its okay to prioritize.

I also suggest educating. I see so often, one of my family members said I should just explain it to them or tell them, or do what I need to do for a child is a child. Reality is, if we could we would. They don’t do this to be dismissive or unkind but instead I believe our families and friends try so hard to include us so we don’t feel left out. They see the challenges and suffering that we face and they want to support us at all times and lets face it, those invites feel so good. They mean so much but its okay to say “no”, remember to thank them for the invite because they too need to know it means something to you even if you can’t attend.

Next, plan ahead. If you have other kids want to attend an event or stay longer, take two cars. Make an exit plan. Set a small goal. For us, this idea came about with my husbands work party. While fun for my other children, 110 kids, a jolly giant man and balloons and crafts was overwhelming after an hour for our daughter so we began to take two cars. I would make a “cameo”, allow her to experience what she could and duck out, early.

Third, be honest with yourself. While we ALL want to be together all the time, sometimes, its okay to realize it just won’t work. One of the greatest gifts I ever gave myself and my family was saying its okay if we can’t take her. She may join us another year and it may be better for the other kids if they don’t have to leave early, witness a meltdown or feel they are just as important as she is, that our attention can be turned totally to them.

Fourth, let go, rid yourself of expectations. This may be the most important piece of the puzzle. For years, I wanted Christmas to continue as it was before. We would sit around and each open a gift, ooh and ahh over it and celebrate together what the others in the family received. While my kids begged for Seraphina to open her gifts, she just wasn’t ready. Finally, last year I got it. Seraphina came in and out of the room we were in. We opened gifts and when she was ready we gave her a chance. Her beginning to understand the process wasn’t just exciting for me and her father but the children too. They delighted in her joy and when she left to play with her one gift, I was reminded of the beauty of autism. They see, feel, hear and taste so much more than we ever can imagine. Witnessing her peace with one thing while others long for more is a great reminder that when we have what we need, we don’t need much more.

As we near the Holiday Season, try to take a deep breath. The holiday may look different but if you take time to make some minor changes perhaps the Holiday will be better than you could have imagined.

A Time for Giving

As we enter into this holiday season, its not like any other we have faced. Many people have struggled this year. Perhaps physically, spiritually, emotionally or financially. No matter who you are or where you live, this year has been a challenge.

Each December we always celebrate the life of Seraphina’s Namesake. Long ago, a little girl danced into our family’s world and changed the words within my mind. On life. Living. Adoption. Personally, I struggled for some time with my own adoption believing that was my cross to bare but now, I celebrate the fact that my parents selflessly chose to welcome me into their home.

Years later, after meeting my biological family, a child was born and brought into the adoptive family I came to know. This young child changed the world. Her light was present in her family’s life and in so many lives around her. In December we celebrate her legacy. Our sweet Clare lost her battle with cancer on December, eight years ago.

Shortly thereafter I found out I was expecting. Our sweet surprise, Seraphina bounded into the world. Seraphina, meaning angel and her middle name for her cousin Clare, whom she would never meet.

Each December, we try to honor her memory by doing little things for others, and this December is no different. I am excited to begin sharing her love for life, her positivity and her need to touch others with her smile as she radiated beauty, tenacity and faith through her long battle with cancer.

We often say, Clare sent Seraphina to help us. I think she told God how we loved him and wanted to draw near and Seraphina’s journey was just what He had in mind.

This year, I am excited because our sweet Serrie is ready to join in the giving. We will share Clare’s story and watch her videos with Serrie and someday maybe she will understand the enormity of the name she carries and how special she truly is.

If you are able, Serrie and I challenge you to grow in joy this season, doing for others, please do so, share and tag us, #messyblessymomma and we’ll share your story and giving with others!

To The #AcutallyAutistic Community, I Hear You But My Daughter Needs ABA

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.

Find Your Tribe

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.

Little Love, I’m Thankful for You

Dear Little Love,

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.

My Child Has Autism. Now What?

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.

Seraphina, smiling, engaged and ready to face the world!
Seraphina, smiling, bright eyed, ready to face the world!

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.

The Crazy Autism Mom with Tattoos that Everyone Warns You About

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.

Don’t Forget You

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.

First, Insurance.

Then, School.

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.

A Physical.

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.

Tips to Make Your Trip to the Dentist a Success

Today we took a trip about an hour away to see a dentist who has a way with children like my daughter. While not a special needs practice, the Newton Sparta Pediatric Dentistry Practice, lead by Dr. Mike is welcoming and a great place to take any children who may be overwhelmed by a trip to the dentist. That being said, as parents, especially of children with additional needs, there are ways we can better prepare our children for a successful visit.

Yesterday night as we flossed my daughters teeth, a tooth broke. Immediately I began to panic. Taking my now seven year old daughter to the dentist has been nothing short of overwhelming so as I mulled over what may happen, I decided I needed a plan of attack.

I was grateful that a wonderful dentist in town suggested calling Dr. Mike and I did so, last night and again first thing when my daughter had difficulty eating. It is so important, as a parent to trust your child’s medical practitioners. When our local dentist suggested that my daughter may need to see a pediatric dentist, I trusted her. Completely. We had experience with Dr. Mike last year as he did surgery on my daughter. While that experience was a challenge for both she and I, the way we were treated by Dr. Mike gave me reassurance that he would do his best to support Seraphina in his office and if we HAD to go to the OR, he was our guy!

In order to make this visit as pain free as it could be, I knew as a parent I needed to do my best to support her for her own success and our dentist so he could do his job.

Here are a few tips to make your child’s dental visit a success:

First, talk. Verbal or not, children need to know. I have learned with my other kids that when they are surprised at medical visits its upsetting. I told Seraphina exactly why we were going to the dentist and reminded her that the dentist was there to help her. In our conversation, I talked about how dentists help others and that even though they are Community Helpers, it is okay to have feelings surrounding trips to the doctor or dentist but no matter what I would be with her and she would be safe. For many kids, anxiety can manifest in behaviors that can limit the care a child can receive in office. If you have more time, you may consider creating a social story to share with your child to talk about our visit.

Next, we watched a couple videos online about dentists helping children. This supported the narrative that dentists are there to help and safe and allowed her to visibly see children being helped by dentists, even if the dentist wasn’t our own.

Then Seraphina and I planned it out. Together.

The plan consisted of talking about the type of behavior we wanted to have, what she may experience and what she could expect after the visit. For Seraphina, anxiety can be a trigger and when she feels anxious aggressive behaviors can follow so an action plan with a reward at the end made her feel more confident in the visit. We also checked out the website of the office online so she knew exactly what she would see, including the photo of the dentist who would be taking care of her.

When we talked rewards, she immediately knew she wanted a Blue’s Clue’s Toy and remembered it was at Target. I found a picture of the toy, printed it out photo, laminated it and cut it out to a size that was comfortable so she could hold it, easily reminding her what she was working for.

Right before we left, I made sure she used the bathroom in a comfortable space and was in comfortable clothing. I also packed a basket of items that may bring her comfort. Inside I had a weighted lap pad, a few small trinkets to keep her hands busy, a body sack, the picture of the toy and a couple small trinkets she could earn in a pinch.

When we arrived at the dentist, I waited until it was almost time for our appointment, looking like Red Riding Hood we stepped out of the car and headed to the office. I reminded her of what would happen and how we would behave and of course what she could earn. Lucky for me, the office was on time. Waiting until it was almost the appointment time gave her enough time to explore the office but not too much time that she may feel anxious.

Once inside, it was apparent the assistant they selected for us was kind, understanding and supportive. She even told me it was okay NOT to show her the broken tooth so that we could save Seraphina’s energy for the doctor. I let the doctor and assistant know what we were working for and all the medications she was on. The dentist used his own knowledge of Blue’s Clues and between the three of us we knew we had a mission and we were in it together. For me, being supportive of the medical professionals working is yet another key component to success so being their extra hands is one way to ensure a better experience. My job, as a parent, was to keep Seraphina calm. I held her hands so that she felt safe and supported. She rested comfortably with her lap pad and indicted that she was going to “take a nap”.

About fifteen minutes after we walked into the office, we were done. That tooth that had been a bother was successful filled and both Seraphina and I felt better for it. As we headed out the door and onto our “shopping trip” as Seraphina called it, I felt sincere joy that we worked with a dedicated and supportive team to achieve her best results.So the next time you head to a visit at a dentist or doctor with your child, set yourself up for success.

  1. Talk About It
  2. Visualize It
  3. Make a Plan, Including the Positive End Results
  4. Pack for Success, Include Items That Will Make Your Child More Comfortable
  5. Arrive JUST on Time, Not Too Early and NOT Late, Rushing Never Made Anyone Feel Good
  6. Be Supportive of Your Practitioner
  7. Follow Through With The Reward

Could You Be An Angel?

I know you see me, trying to look put together while I enter into a place of worship with a brood of ducklings following behind. I am sure you see me gently guiding my child, by hand and shoulder, prompting her to genuflect, to stand, to sit and kneel.

Perhaps you have been an onlooker watching as she talks or colors or refuses to kneel. Perhaps you wonder why this child, seemingly “normal” and well into the age where behaviors at church should be gone still has a bag, or a treat now and again to keep her quiet in the pew. Perhaps you wish we weren’t there, our big family. I know, its hard. Its easy to see a child who has visible needs and feel compassion and empathy but with a silent disability, one that is unseen, so often we jump to judgement.

Its hard not to judge. I don’t fault the judgement. Looking at our family walking into church, it appears we have it together-well, most days. A mother, a father and five kids, all together at Mass weekly. I want you to know I don’t judge you for judging my daughter because truth is, I have been you. Before I wore the shoes I do, I looked, perhaps glared when my time at Church was interrupted by what I deemed as poor behavior. Perhaps I judged when your child had an iPad and ear phones, at church. Maybe I questioned why your child, who seemed far too old sat with a drink or even worse, a snack.

I’ll admit it. I didn’t get it and armed with what I know now I wish I could go back, to say I was sorry for the stares and the glares but now, standing on the other side I realize often judgement comes from what we do not understand.

For our family, even on difficult days, we want to bring our children to our faith. Being present in front of our Heavenly Father, as a family once a week holds this family together and when he’s absent, his absence is seen in our actions within our entire family.

Today though, today, this church service was different. I could tell you the times we have been asked to leave or the times when we’ve been glared and stared at but today, today something happened that shook me to the core.

Inside her world, she knows what she wants and what she needs. It is my job to learn to understand how to help her be her best self.

A stranger was kind.

Simple as that statement is, what she did for me today meant more than she could ever imagine. Today, unbeknownst to me, I grabbed the wrong bag of markers on the way into church. As my daughter felt overwhelmed she escalated and the quiet Parish that was prayerful and reverent resonated with shouts and frustration, I tried to coax my daughter out of the pew to leave with as little disturbance as possible but it felt as if all eyes and ears fell on her. I felt as small as one could and my steady breathing was all I had to focus on to get out as fast as possible- without my own crying.

As we walked out I averted my eyes from others and I prayed.

Then it happened, from behind my car, an angel. You see, angels live here on earth and we each have the opportunity to be this angel to another. I didn’t know this woman but as she came around the back of the car I was flustered trying to identify exactly what my child needed. Her words were simple.

“Can I help?” she asked.

Never has a stranger done this for me. Sure, I’ve had friends do it. In fact I’d be remiss if I didn’t share that a friend followed this woman shortly after reminding me I am not alone and that she too was here for me. Today I was shook.

The woman, this stranger went on to talk to my daughter. To engage her and while I expected her to escalate again, her calm voice was a gift and her presence calmed my once distraught child. When I finally figured it out and had exactly what my daughter needed, we returned to Mass, together. To celebrate.

I had a lot to celebrate as I ushered my now calm daughter into the cry room. I had support. I felt love and as I listened to our Priests homily, he preached on that topic, LOVE. It was as if his writing was prepared for exactly what happened today. Perhaps he did it on the fly, not prepared for what my daughter would bring to mass but able to regroup and give to our community what was needed. Perhaps it was planned and was no coincidence and instead of judgement people left mass with empathy. I was reminded today its easy to say we love one but another thing entirely to act on it.

Today, more than any other moment in my Faith Journey with Autism, I saw God. In this woman, this angel who chose to be Jesus to me in a difficult moment.

Perhaps I don’t go to your church or maybe you have been the “me” I was before this journey. I am fairly certain if I’m not there, someone walking my journey is. I get it. Its uncomfortable to watch as a child behaves in an unexpected way but if you just take a deep breath and remind yourself why you are there, perhaps you may have the opportunity to show love to your neighbor, to be their angel. To show Jesus’ face and I guarantee, your gesture will not be forgotten.

Imagine.

Like a flower, sometimes children take more time to bloom. They may not look like you anticipated but if you take a moment, you will find the beauty in each individual child.

Imagine. Being told, your child, the one you birthed was slipping, into an abyss and changing. That she would need countless hours of therapy that your insurance wouldn’t cover–initially and you spent countless hours fighting for her.

Imagine. Fearing that gap from 3-5 would be lost. The time when you can work diligently and get so much back because you don’t have the therapies you need. So you go get trained to be a therapist because, you want so much to give your child her best chance.

Imagine. Your school district, the people who were supposed to be who the insurance said they were, didn’t have the program so you fought. You asked for certifications for paras, you requested a full time behaviorist and even more, a full day Autism program and they implemented it but still, you worried.

Imagine. Finally getting insurance coverage only to find out nearly no one in your area accepted it and you weren’t J Wow and couldn’t afford the therapists without support and so you went to work again. Finding therapy companies and starting and then being told they couldn’t continue or that they didn’t think your child was safe to be in public.

Imagine. Being told your child was restrained 58 times in one school year and another 39 the next when the year ended due to a pandemic and you now worked full time, you had a child who needed support and the only support, school was virtual.

Imagine. The first month of the pandemic, your child broke her collar bone and shaved her head because she had no understanding of danger and so you worked diligently with her team, remotely and finally decided to bring medicine on board.

Imagine. Giving a child medicine, waiting. Praying. Hoping. At the same time finding a therapy company. Hoping some more and wanting the behaviors to change.

Imagine. The therapy company comes in. The first therapist quits. The second you wait on pins and needles wondering if she’d leave you, too?

Imagine. She’s a unicorn. The medicine is working. You see your child becoming who you once remember her being. You hear her laughter. You recognize her awareness of herself, her surroundings and then you realize the people who knew her before don’t know who she is now.

Imagine. Trying to get others to recognize her growth. To see who she is now, not who she was before medication, before her new unicorn therapist.

Imagine. Hearing your child excited for her “friends” on Teams.

Imagine. Your child being judged on behaviors and her daily work while other kids have similar behaviors but are accepted no questions asked.

Imagine. Countless hours sobbing because people aren’t “kind” like the mottos say and they don’t see children for who they are and so you spend ALL your life fighting for what your child deserves.

Imagine. No, don’t. Its a nightmare and its the one parents of children who are differently abled live every day.

So instead of imagining, put yourself in their shoes. Try to feel their pain. Understand their smiling eyes are doing so because if they stop smiling they will feel what they have become numb to because this is life as a Special Education Parent.