He's Perfectly Preston

Preston was born only 8 hours after I was induced. When I saw him my heart exploded with love, joy, and pride. He was absolutely the most beautiful person, place, or thing I had ever laid eyes on. He was unrivaled and still is. The day is mostly a blur except for a few things: 1) Hearing Jared's voice as Preston got close. The usual man that fainted at the sight of blood or light headedness that came with talking about something as simple as blood pressure was gone. When Preston was almost here, something in Jared's voice changed. Going from a nervous husband trying to keep his wife calm to a 6 year old on Christmas morning. "He has a head full of brown hair Honey, keep pushing, he’s almost here!!!" His voice cracked, I could see tears forming in his eyes. I've never witnessed this excitement in a grown man. 2) Seeing Jared hold him, the same love and pride written on his face as he stared at Preston. Jared's demeanor changed, he had a swag in his walk, and boost in his confidence. I mean how could he not? He produced a perfect 6 lb 15 oz beautiful baby boy. No prouder moment in a father's life.  I cried as I told my mom "He's going to be an amazing father!" And I was right. 3) My mom wiping her face as she fought back tears when I was at the worst part of labor. Preston's umbilical cord was wrapped and wouldn't allow him to drop completely. I pushed 2 sets of times and somehow he had crowned. Unfortunately, the doctor had left to deliver another baby. So, they told me to hold him in. Lastly and most importantly, I'll always remember looking into those jet black eyes and crying "He's so beautiful, he's the most beautiful thing I've ever seen" tears of joy steaming down my face as they laid him on my chest, my teeth chattering from the intense pain my body had just endured. A sense of comfort fell over me. Everyone tells you, you can't imagine the love you feel when you have a child. They aren't lying. When you give birth, you also give away your heart. It floats within this little human staring up at you. You no longer live for yourself, you live to serve your child. You live to protect them, to love them, to teach them. You look at the man you only knew as your husband, he's no longer human, he is superhuman. He stares into the eyes of his son and you see a purity you couldn't have imagined.

I want Preston's life to be perfect. I want him to be happy, satisfied with life, and to feel loved. But, I fear losing Preston. I know, it sounds like I'm crazy, I guess I am. But, the thing you aren't told when you have a child is the brights are brighter and the darks are darker. It's like before kids you have a black and white television, then you're given the highest quality HD TV…vivid color contrasted with the darkest black. You've never felt joy like you will gazing into your baby’s eyes. You've never felt pride until your one month old can hold his neck up like a two month old. (Yes, our doctor told us this and we thought Preston had made the Olympics!) You have never felt love until they put this little wet alien looking baby on your chest. (At the time he didn't look alien to me, he was beautiful) But, you've never felt the striking fear and adrenaline rush until your child falls into the pool or sneaks out of the house and runs into the road.  You've never felt sorrow until you see your child fall and have to get stitches. Before kids you lay awake with questions things about your life: did I pay this bill, did I clean up that mess, and did I respond to this email, tomorrow I need to get that done? After kids you question every facet of yourself. Am I a good enough mom, what if I wouldn't have seen him running on the road out the window, what if a car was speeding and didn’t see him, how would I survive without him, is he happy, does he know I love him, why didn't I yell at that mom who made a snarky comment about Preston? You'll never know a real nightmare until you're jolted from a dream crying out to your drowning son. The nights become endless. You can't wait until they sleep through the night, but once they do you're up every hour anyway to make sure they're still breathing. You can't watch the same shows anymore. Law and Order SVU becomes your personal nightmare playing out on NBC. You equate every child to your own. It's a darkness that only comes with being a parent. An untapped fear we all carry. 

He was a needy baby that never seemed truly happy. He had colic like many other babies, that lasted until 3 1/2 months. He cried from 11p-3a...a torture I wouldn't wish on my worst enemy. He was content, but never really laughed. You know the sweet little belly laugh or cooing that babies have? We missed it. We noticed Preston didn’t call out Mommy or Daddy when he was hurt or when he was ready to be picked up. He really didn’t want to be picked up, instead, he wanted to sit in his swing. I couldn’t even take him to the grocery store. We would get through the produce and he would lose it, screaming and crying. He wasn’t much of a cuddly baby, but I didn’t know the difference, I swaddled him in hugs and kisses all day.  We didn’t think much of his quirks until he was around a year old, he was very delayed in speech. He would mimic what you said, or attempt to, but would not use his own words to gain attention or mand for objects. We came home for Preston’s first birthday.  The thing I remember most is thinking how it didn’t seem right that Preston wasn’t laughing when my brother was playing with him. Corey was tickling him and throwing him up in the air and would toss him on the bed. Preston was smiling and you could tell he enjoyed it, but he never laughed.

As a mom with a “special needs” child, you need to hear it more often that you are doing right by your child…it motivates you on a bad day and empowers you to push through when you’re ready to give up. There have been plenty of sleepless nights, as many other mommies have, but a weight is on your shoulders to do more, to go above and beyond to ensure that your child will have the same standard of life as his peers. When you know that there’s a possibility that Preston will have more struggles to complete the same tasks, it hits your heart deeply. Knowing sitting in a chair during class, standing in line, or walking around a busy museum is next to impossible for your son. In a society where children are looked upon to do more, know more, and act more grown, where does my son fit in? We got looks every time we turned around. Not the kind smile from another mother saying “I know how you feel, we’ve all been there, it gets better.” Instead the “What the hell is wrong with you, you need to beat his bottom. If that were my child, I would never let him get away with that. Disgusting.” So many times I have thought about being that mom on the news that goes crazy on the old lady that gives “that look”, to cuss her out and tell her my son is doing the best he can and we can’t all be perfect mothers like her. I can feel my blood boil when they look past me and give HIM the look. He’s a baby…I mean I get it, he’s a toddler, but for real, he’s a baby (and always will be in my eyes). What is wrong with our society that we feel it’s appropriate to give babies dirty looks?! I feel the need to explain Preston, not just to excuse his behavior, but explain that to you it’s a grocery store…to him it’s bright lights, people talking too loud or too quiet, a different smell in every isle or when people walk past, all the colors, all the textures, all the numbers, and he’s being confined in this little cart as I push him around. It’s overwhelming for a child that cannot process out unnecessary information. I don’t hear the lady talking on her phone while I’m searching for the perfectly ripe avocado, but Preston not only hears her, but also the guy looking at the salad talking on his Bluetooth really loudly, and the little kid that picking out yogurt, and the lady down the way getting carrots. Our brains function in a way that allow us to maintain our sanity and complete tasks without letting the other people in the store interfere. Preston’s doesn’t. It’s overwhelming. It’s scary. Give him a break.  

For a while, I didn’t see things this way either. I was selfish. Questioning why…why couldn’t Preston be like the rest of the kids? Why couldn’t he sit at the play date instead of hauling his little tail end to random areas of the park? Why couldn’t he enjoy himself playing? Why couldn’t I be one of the moms who got to sit there and chat while my son played in the sand? Why is he melting down when we’re doing this for him…like the aquarium, park, or gymnastics? But more so, why is this happening to me? I didn’t see Preston at the time…I saw a child that drained every last nerve, that was slowly sucking the life out of me and my relationships. That’s not to say I didn’t love Preston, I did with every fiber of my being (and still do ;)), but I didn’t understand the little man he was. I didn’t understand HIS ticks, HIS quirks, HIS needs. I only thought about my own. So many times I thought of returning to work, but I didn’t trust anyone to care for him. I imagined walking into a daycare and Preston in the crib with a bottle propped in his mouth because no one wanted to interact with him. And to be embarrassingly honest, I couldn’t put anyone else through that. I knew how bad it would be and I couldn’t bring myself to put another person in my shoes. At that point, he didn’t have good or bad days…they were ALL bad. Like, Jared is walking in the door and I’m pouring a ½ and ½ cocktail, bad! Like, I want to go bald, but not in a Britney Spears shave your head kind of way…I would rather pluck every hair out of my head than to deal with another minute of this torture. He would have a good day once a month if that. He would have good time frames, some days a few minutes his good nature would shine though, sometimes I got a few hours. Those very short bursts of Preston, his true self, his love, his smile, his hugs would be the only thing that pulled me though the dark days of frustration and complete exhaustion.

Preston’s frustration was unmatched by any other child I had seen melt down. His were (and still are sometimes) fierce, scary. He begins to rage, not intentionally trying to hurt you, but he can’t control himself once he hits his breaking point. He would hit, bite, pinch, claw, and headbutt to regain control. The melt downs would happen out of nowhere sometimes, we would be playing and he would throw himself backwards, arching his back and screaming. The episodes would last anywhere from 5 minutes to 30 minutes. It was hell. Not just because you are getting beaten by a 20-something pound toddler, but because you could feel the hurt in his body. I’m not sure how to explain it, as a mom, you just feel their pain. I would cry while I held him and he used me as a punching bag, trying to calm him. Just typing this brings a feeling to my chest and tears to my eyes that every mother knows. That was the hell…seeing your child hurt and not knowing how to fix it. I was tortured because my son was being tortured and I couldn’t help him.  I left plenty of play dates, stores, gymnastics classes, aquariums, and avoided these also because of his meltdowns. He would often go to kiss a kid and would end with a bite. When he hugged, he would push the kid over, or pull them on top of himself. It always looks as though he was trying to be aggressive. I would leave mortified, hurt, and often in tears. I knew that although the other moms would be supportive in the moment, it was hard to see their child be bitten or pushed and pulled. I knew they were going to vent to other moms about Preston. That hurt even more. Why can’t he just be normal?!

My breaking point came one morning after we visited a mommy and me preschool. I thought it was going to be so amazing! He would get the opportunity to socialize, craft, and play with all kinds of educational toys. We came in and he immediately began running (as he always did) while I was filling out the entry paperwork. The teachers kept telling him “no running” but he tuned them out. I finished quickly and guided him to the different stations to see what peaked his interest. He went around the room, but nothing kept his attention for longer than the time it took for him to dump the basket and mouth the toy. I was trying to clean up and sanitize (preschool rules) the toys and keep him from tearing into the next thing. At this point, sweat was beading on my forehead and my dripping down the sides of my face as I tried to keep up with him. We stopped at the kitchen area where he played with his friend. Then he wanted the phone she was playing with. When I gave it back to her, Preston bit the little girls mom (trying to get the little girl, but the mom put her arm out). I grabbed Preston to hold him for a time out (he wouldn’t sit on his own, so I held him), that’s when all hell broke loose in this little room. He began screaming and grabbed my face with his nails. He slit the inside of my nose and took a small chuck out of the inside of my ear. I had scratch marks on my cheeks and chest. I grabbed his hand and told him no, he threw his head forward to headbutt me, then abruptly threw himself backwards, almost falling out of my arms. I was fighting back tears and I looked up to the teacher walking over. Another mom caught my eye, yep, she was giving that look. My heart sank, but my blood boiled. I wanted to claw her eyes out. The teacher kindly said it was ok, and just to keep patient and try to bring him back and let him get used to his surroundings. I quickly grabbed our things to leave. Preston was kicking and screaming the whole walk back to the car. I buckled him in and he calmed down, just sobbing at this point. He was sweating and exhausted. My heart broke for him, but I wanted to leave him there I was so angry, just drive away and come back later. I got in and started the car and cried. I sat there in the elementary school parking lot and cried, hysterically. I knew something was different about him. Not just more commanding of my time and energy, but something was working against me with him. When we got home, I sat in the car while Preston was passed out in his seat and cried even more. How could I feel this way, who thinks something is seriously wrong with their child? Who thinks about driving off and coming back to get their kid later? Who is so selfish that they question God as to why they are being punished when I was given the blessing of a child? But I knew it, deep down I knew, Preston is different.

I called my Granny. I told her how he was different, how I didn’t know how to explain how I knew. I explained the story about the preschool and how people, even other mothers, didn’t understand him. How I couldn’t take the pain of having my son be looked down upon…bullied and judged by grown women and men. How it breaks my heart to see him wound so tight that he unravels and passes out from the physical exertion he releases during a meltdown. I could hear the tears in her voice when she said “Brandi, my heart is breaking for you, I know exactly how you feel.” She began to tell me her story, our lives involving our sons were parallel. Hearing her words lifted my heart. Someone else knew how I felt, how much love I felt for this tiny terror that exhausted me. Jared got a sense of how it was, but since he was at work all day, he didn’t understand the exhaustion that came with everyday activities like eating, drinking, changing his diaper over and over while Preston kicked your guts and screamed as if you were beating him.  The 24/7, no breaks, no chatting with friends, no lunch dates. Then she said the words that would forever change my being, “Brandi, God gives us the child we need. He made him specifically for you. He wouldn’t give you Preston if he didn’t think you couldn’t handle it. He doesn’t make mistakes.” Something about Granny saying that clicked with me. My son IS perfect. He’s perfectly Preston. He broke the mold just like his great uncle. I had been so selfish in questioning why he couldn’t sit to play the shape sorter that I overlooked his ability to identify the shape and color, so although he couldn’t get the shape into the hole, he knew the shape. I had overlooked Preston, his strengths, his likes, his world. By 18 months (a little sooner for some things) he could not just say his ABCs and count to 10, he could identify the letters and numbers. He knew his shapes and colors and could pick them out. We were told these were skills that developed in most children around 2 ½. Around 19 months we noticed he could memorize words out of his favorite truck book. He wouldn’t play with toys, instead he would investigate them, looking them over to see how they worked. He could tell time on a digital clock. Amazing feats in a child, and I overlooked them. His own mom. 

Before this, I was insecure about his behavior. How would people think of him or me when they see him act like this? You know how you try to make a joke about something you are insecure about so that other people do not joke. For most people, it’s their weight. They’ll make a weight comment so they didn’t have to take the sting of hearing someone else joke about it. I would make comments like “my little coo coo bird”, or “crazy baby” and often talk about his downfalls so that others didn’t. It would hurt too bad to hear someone else point out his weaknesses. We visited friends one weekend and Jared was telling them how Preston could count to 40. I quickly stepped in and said, yeah, but, he can’t have a conversation like their kid can. I didn’t think, I just acted in an effort from keeping them from saying that. I was so insecure that everyone would make Preston feel worthless that I didn’t realize his own mom couldn’t praise him outside of the house. I was so worried about others that I forgot to pump him up, to talk about how awesome he was, how funny he could be, how loving he was when he would walk up and say “hold hands mommy”. These failures in my parenting will always haunt me. But, with this new found confidence and understand of my son and myself, I was ready to face the world with a new meaning of being a mommy. I was no longer a momma bear, I was a momma beast, ready to fight ANY battle, even with Preston so that he could succeed and live a life with happiness. 

After a speech evaluation and failed attempts at speech therapy, we consulted California’s Early Intervention program (EI) for more guided help. He received a behavioral evaluation, the results were a blow to my heart. It felt like someone punched me in the stomach and took my breath away. I cried...Jared was pissed, we both were. How dare this B tell us our son isn’t perfect. Although we knew something was going on, we did not expect the report we received. It detailed Preston’s inability to make eye contact, imitate, understand language, transition to another activity, engaged in sterotypy, her quotes “He reportedly shows parents affection by leaning head on, or kissing without puckered lips, this was not observed”, etc.  I took it as she was saying Preston didn’t love us and I was lying. It was a report nitpicking my son to pieces. He scored delayed in every area of testing.

It was simply fate how things worked out. A few weeks before, my mom had visited and taken Preston to the park. There, she met another Ladera mom with two boys that lived close by. She gave her my phone number and suggested we meet up for a play date. The day of the meeting with Preston’s EI case worker, I ran into the mom on our morning walk. I had no idea who she was, but she walked over and asked if I was Preston’s mom and told me she met my mom. We hit it off and began talking about Preston’s meeting. Her son had also been enrolled in EI and was giving me pointers. I told her how Preston would be sitting next to me watching TV and would turn over and bite me, out of nowhere. I had tried every punishment out there, including biting him back. Low and behold, she was actually an occupational therapist and informed me it sounded like Preston was sensory seeking and not aware he was biting. She began to explain other sensory seeking behaviors and it was as if she knew Preston all along. This came as a shock! The OT that was supposed to evaluate him during his behavioral assessment was called because her daughter was sick, so she left. She completely missed it.

His EI case worker informed me that most children get about 2 hours of therapy per week, and she would begin the process of finding a place that could meet his needs. A couple days later, she informed me she had found a place that would accommodate his therapy needs and would be able to re-evaluate him for OT. She sent me the specs on therapy: ABA, 6 hrs/week. I had no clue what ABA was, so I googled it. My heart sank for a second time. My son is autistic?! 6 hours a week???? She said most kids get 2 hours, Preston is so severe that he gets 3x’s the therapy??? I emailed the case worker and asked if Preston was diagnosed as autistic, I needed to know. She informed me that at this point, they do not make a diagnosis, but based on his shown behaviors they suggest a therapy that would best suit his needs. In my mind, she confirmed it. I was devastated…well devastated doesn’t begin to explain it. I took it as though this altered his life path, somehow it changed how he would grow up, whether or not he would be happy and satisfied. That’s when Jared gave me the psychological “slap in the face” that I needed to hear…”Honey, it’s just a term. Preston is Preston. If he’s autistic, it’s fine, it doesn’t change him. This is who he is. This is all we’ve known. You’re looking at it like they’ve given him a diagnosis of a terminal illness.” He was right. Does it matter? Does it change the situation, those letters written together a-u-t-i-s-m on a piece of paper? More important, do those letters over-ride P-r-e-s-t-o-n? I just wanted him to live a life of happiness and fulfillment, could he do this if he’s autistic? Yes. 

Most people know the story from here on, he began ABA and OT and made strides huge enough to move mountains. He continues to move mountains every few months when he decreases that number in the % delay column. He has moved so many mountains that when he was evaluated for a medical diagnosis, they would like to wait to confirm, since he has come so far. What a blessing! The doctors are confident that Preston has sensory processing disorder, and that when he becomes unregulated can cross over into more classic autistic behaviors. He is very rigid in his play and behaviors. He becomes obsessed with certain tasks like vacuuming, reading certain books, watching the same DVD over and over. He still frustrates easily, but he is able to be soothed before he hits a breaking point. He stems, flapping his hands when he becomes excited or scared. He runs aimlessly, just trying to get more input on his little joints. He memorizes books. The jumbled mess that he says to you with such enthusiasm is usually “Oh the Places You’ll Go”, “Mr. Brown”, or “How the Grinch Stole Christmas”. His conversation consists of reciting these books to you or listing things he knows (ie: counting, shapes, colors, and the course of action on how to vacuum). Yes, he’s delayed in language, but how many two year olds do you know that can count to 125 in English, 12 in Spanish, and memorize long Dr. Seuss books? He is considered a seeker and avoider. He seeks input on his body because he has low body awareness (think about when you’re drunk and stumbling over yourself). He frequently rams into furniture, runs around aimlessly, rolls on the floor, jumps, and his favorite is his “Clip”, a silicone basting brush he uses to calm himself. He avoids tactile input. Certain textures like finger paint, lotion, and diaper rash cream will send him into a frenzy. If you walked into our house when I was putting on diaper rash cream (very rarely), you would think I was beating him by the way he cried out in pain. He cannot tolerate his nails or hair being cut, body being washed, or hair being rinsed. He is also sensitive to other’s touches. His occupational therapist has a difficult time giving him the input he needs because he cries out and refuses her if she reaches for him. He can easily regress when there are stressors. He has night terrors if his schedule is off, or if he’s been bribed with too much sugar. He still cycles between sleeping and not sleeping through the night. This will get better, we just have to take the good with the bad.

We now have more good days than bad. It’s a relief to be able to enjoy your time with your child instead of fighting on who HAS to take him. Now it’s a tug-o-war of who GETS to play with him! He can brighten up a room with a simple song and dance (jumping around in circles). 

We have learned how to deal with emotions that come with people who do not understand Preston. I no longer worry about the ignorance of others. I only need to understand my son. If others choose not to, that’s OK. So, when he’s throwing a fit while we’re out to eat, it’s OK. I’m not packing up the bag, scurrying out as not to interrupt anyone else’s dinner. I just look around and smile, like it’s OK, just give him a minute and he’ll stop. And he does. He just has to cry out the frustration and he can start fresh. Ever had a bad day, the one where you came home and just cried, then you felt better. That’s Preston. I refuse to make him feel like he can't be out in public because other people are not considerate or compassionate. My son is trying the best he can. Another quote I love, “My son isn’t giving me a hard time, he’s HAVING a hard time.” 

Everything happens for a reason and I believe whole-heartily what my Granny told me “God doesn’t make mistakes.” Preston was given to us as a testament to our love for our child. That no matter what, he will always be loved and cared for. Not only by us, but our family and friends. He has shown me how my way isn’t the only way, my plans are not the plans of God, therefore, throw them out the window. He’s taught me how to love unconditionally, even when I want to lock him in his room and cry out his tantrum. He’s taught me how to appreciate the good in others. And how to accept the negative in myself. I’m only human, but all I have to give is given to him. Every day is trial and error. Every day is different.  Tomorrow can be better. He teaches me that people can change. He teaches me to open my heart and go with the flow. He teaches me because I need to teach him. We have to show our children what it means to be a loving, caring, struggling humans. We all struggle, and that’s OK. We don’t have to be perfect. So, the next time you see a frazzled mommy or daddy at the grocery store whose child is acting like he was just taken from the zoo, shoot them a knowing smile. Make their day by nodding in approval. It may be the only pat on the back they get, and it may be all they need. Think positive instead of glaring. Don’t let you child glare either. Use this moment as a teaching moment to explain to your child what feelings mean. Tell your child that the other child is upset or frustrated, encourage your child to smile (at that the little banshee in the cart) in an effort to make them feel better. Let’s encourage our children to be nice, generous with their laughter and smiles, to see the positive in others. Let’s take the higher road, instead of talking about how horrible that child must be, recount a time when your child acted out in public. Let’s teach our children that the grass isn’t always greener on the other side. Our grass may need watering, but that’s life, at least you have grass. At least I have a little boy that I can write my struggles about. And at the end of the day, he’s perfect the way he is, because he is Preston.