Hellobee

This is part four of our interview with  mamapink who shares a glimpse into life raising her 3-year-old daughter Ayla who is on the autism spectrum.

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How is your daughter different from a neurotypical child? What types of issues does she deal with daily?

I would assume that Ayla has a lot of similarities with a neurotypical child because she is high functioning, however there are probably more differences than similarities. A lot of the differences were previously touched upon in Part 1, but I’ve gone into more detail here. We obviously can only speak for ourselves and we do not represent any or all families with a child with autism.

O B S E S S I V E  B E H A V I O R S

Obsession with mommy – This is our single biggest challenge. Ever since she was born, Ayla would not stop crying unless I was holding her. As a newborn she would cry whenever someone else would hold her, even my husband, but the second that I held her she would immediately stop crying.

Ayla @ 1-2 months old

That obsession with me and separation anxiety has never really gotten better over the years. Ayla will go bonkers if I’m in a different room than her, even if the rooms are not separated by walls (our living room does not have a wall separating it from our dining room). I can barely go anywhere on my own to doctors’ appointments, run errands, the bathroom, etc. There are very few times when she’s completely okay without me being around, but those are very rare, so my husband and I were never able to go out on date nights or leave Ayla with someone else. That is still a dream for us! I usually have to sneak out whenever I have to go somewhere by myself, and she refuses to sleep if I’m not home with her.

Ayla is unable to play on her own and I always have to be there next to her. Washing the dishes, cooking, cleaning, paying the bills, all of these things usually need to be done when she’s asleep, but the problem is that she’s rarely asleep! She often doesn’t nap and when she naps, it’s only for maybe 30 min to 1 hour and she won’t sleep until really late at night,  at which time I am also utterly exhausted, not just physically but mentally as well. It hasn’t been that long that she’s taken a liking to spending time with my husband. Shortly before she turned 3, she started to want to spend a bit more time with daddy. Prior to that, I barely got any breaks even while my husband was home.

– OCD tendencies – 1) Cleanliness – if her clothes get wet or dirty, she wants to change clothes right away. If her hands or any part of her body gets dirty, she needs to wash or clean right away or she will tantrum.

2) Order – certain things have to be a certain way. If she saw an object or a toy played a certain way the very first time she saw it, then that object or toy needs to be played or placed the same exact way she first saw it, all the time. She most likely will not be open to playing with a certain toy in different ways. It has happened in the past, but it is rare.

3) Patterns of behaviors or routines – Sometimes, more often happening right after her naps, Ayla has an extreme need or expectation for certain patterns of behaviors to take place. For example, when Ayla was younger and woke up from a nap, I would slowly open the door to her bedroom and say “are you awake?” in Korean and she would often just smile. This was a pattern when she used to wake up from her naps without crying. After a certain point/age, she started waking up in a very upset mood, often crying and expecting these set patterns of behaviors to happen. When they didn’t happen according to her expectations, she could tantrum for over an hour and not stop until I (we) re-enacted it just like how she had expected.

Another example of OCD regarding routines is walking the dog. She always wants to walk the dog, but there are certain things she has to do in the process. She has to hold the clip of the leash while it is being clipped, always hold the handle of the leash (we hold the non-retractable part of the leash so that our dog doesn’t pull on her), open our front door, press the elevator button, hold the poopie bag, throw it out, open the door using our magnetic ID card, press our floor number on the elevator, open our front door, and finally take off the leash herself.

Going to the supermarket is also never easy. In the supermarket that we go to, there is a little koi fish tank with a frog fountain that spits out water. Every time we go to the supermarket, we have to spend a good amount of time at that koi tank. She has to make mention of the color of the fish, say the word fish a million times (repetitive speech), mention that the frog is spitting water, etc. Then after that’s done, one person — usually my husband — has to take her inside the supermarket’s fish section where they have fresh tanks of lobster and fish while I do the food shopping. She has to look at the lobsters, abalone, whatever fish they have in their tanks, etc. Taking her anywhere is never easy nor quick.

P E R S O N A L I T Y  &  B E H A V I O R S

– Tenacity & Temper – Ayla almost never relents and knows exactly what she wants and doesn’t want, and it’s been like that ever since she was born. Even at an age where most babies aren’t aware or able to know whether they like something or not, Ayla was always very sure of what she liked and what she didn’t like. And if she doesn’t like something, she really doesn’t like it and she will not like it no matter how much exposure she gets or how much we try to make her like it. Her likes and dislikes are intense. If she wants something, she will not give up until she gets it. And if she wants something, she wants it now. Impatience is also an issue that goes hand in hand with her temper. If she doesn’t get it, then she behaves as if it’s the end of the world and tantrums intensely. Re-direction hardly ever works because she has tunnel vision and is always so focused on what she wants. She has an extraordinary memory so we normally end up giving into her desires. If we don’t give in, she can and will tantrum for literally hours. We feel like if she were a NT kid, then either she could be re-directed somewhat easier, or she would tantrum for just a little and eventually give up/forget what she wanted in the first place. One of our major difficulties is differentiating between the spoiled side of Ayla and the autistic side of Ayla.

– Memory – Her memory is extremely sharp. It’s one of her greatest assets, but it’s also one of the greatest problems for us. As previously mentioned she is very passionate about her likes and dislikes, unrelentingly so. If we happened to be able to re-direct her and convince her that we’ll give her what she wants after something (fill in the blank) gets done first, then she will surprisingly wait, even if it’s for a day or so, but she will not forget and ask for whatever it was again. She also has really good visual spatial memory, so she will recognize street landmarks while sitting in the car seat and if it’s a place she doesn’t want to go, such as school or the church (nursery), then she will start crying “no go this way” several blocks before we actually arrive at the location.

– Meltdowns – Whether they happen for a reason or apparently for no reason at all, when they happen they are intense. In order to prevent major meltdowns I’m constantly watching the clock to see whether she’s tired or hungry. Again, it’s like “walking on eggshells.” Once that timeframe is missed and she’s not fed enough or she hasn’t gotten enough rest, then it becomes meltdowns galore. Anything and everything will set her off and to make things worse, hardly anything ameliorates the situation. When meltdowns happen in public we often get a lot of looks (sometimes judgmental stares) because they are intense. There is plenty of extremely high pitched screaming, crying, lying on the floor, rolling on the floor, stomping, etc. She stiffens up like a wood plank, fists closed shut and shaking, bright red sweating head, etc. Violent or intense meltdowns in public (and in private) seem to be a very common thing amongst families of children with autism. And from personal experience, it’s been one aspect of autism that typical parents/families don’t seem to understand. I think most people probably attribute these extreme tantrums to the child being very spoiled.

– Lack of empathy – She doesn’t understand other people’s emotions, so she acts inappropriately at times. The weeks after I found out she was autistic, I cried every day for two weeks. I would be sobbing uncontrollably in front of her and she had no unusual responses to my crying. She couldn’t recognize that I was sad or upset. That made me cry more! =,(

– Literal Understanding – You can’t say silly things that you normally would to a NT child to just be silly because Ayla will always remember it as being true and never forget. We always have to be truthful and literal with her, and careful whenever we introduce her to new things and the way that they are introduced to her because she will remember it and try to keep it the same way, forever.

P H Y S I C A L

– Eating – Due to her GERD as well as her textural pickiness, Ayla is an extremely picky eater. When it comes to solids, she only wants to eat carbs, if even that, and she is also very picky about which types of carbs. Not all pastas or French breads are made the same. Certain shaped pastas taste better to her than others. Certain brands are tastier than others. Certain breads are tastier than others. I’m sure that is true for a lot of people, but Ayla’s taste buds seem to be ultrasensitive. She is a super taster, like her mom! She will not willingly eat fruits, vegetables or proteins, and probably more than 80% of her daily diet is milk (lactose-free milk, because she is lactose intolerant). Due to her pickiness, I tend to turn into a short-order cook, but I often run out of things to cook her because she will often not even try the food at all or barely eat it. The foods that she wants to eat are often the unhealthy ones. I feel like I’m constantly cooking, or at least constantly thinking about what to feed her, and it’s a major stress factor in our lives. And because she often only drinks milk which doesn’t give her much sustenance, I try to feed her every two hours, as if she were a baby. This is a big challenge because it limits our flexibility when it comes to going anywhere. We either bring a lot of milk in a cooler hoping that she’ll drink it while out and about (because she often doesn’t want to eat or drink much while outside and stimulated), or we time outings between her meals so we often can’t go anywhere for long periods of time. There isn’t much we can buy outside that she will eat either. The only sure thing she will “eat” is really just milk.

– Medicine – She takes two 5 mL syringes of prescription laxatives because of constipation from over-consumption of milk, and one 1 mL syringe of anti-reflux medication for her GERD on a daily basis. She has been taking prescription medication since she was 6 months old. A lot of times we have to bribe her with chocolate (one of her favorite things in this world), but most days I give her the medicine while she’s sitting in the bathtub and she can’t run away. Even though she’s been taking medicine since she was 6 months old it is always a struggle. We can’t blame her.

– Sleep disturbances – None of us got enough sleep ever since she was born, so we are always exhausted. Of course there are good days, but bad sleep days are more common in our household. She is extremely stubborn about going to sleep and sometimes staying asleep is also a problem. She often has night terrors and wakes up very often in the middle of the night. She moves around a lot and sweats profusely while asleep.

D E V E L O P M E N T A L

– Developmental delays – That affect every day routines/patterns include: 1) Potty training – she knows how to use the potty, but she absolutely refuses to use it so she is still in diapers. 2) Autonomy – She does not know how to feed herself properly, dress herself, play by herself, or put herself to sleep. She needs help with every aspect of her life, almost like a baby.

– Difficulty expressing basic needs – She has a hard time expressing needs (I’m hungry, give me food) and emotions, which is why I preemptively feed her without her having to request it in order to prevent tantrums. But that in turn doesn’t give her the chance to properly learn to ask when she’s hungry. It has gotten better this year, but she is still unable to consistently request food when she’s hungry.

– Sensory Processing Disorder – Difficulties going out also encompass gatherings, birthday parties, going to restaurants etc. We never go out to eat at a restaurant as a family because Ayla will refuse to sit still or even stay inside the restaurant. We either eat at home or get take out, or we go to restaurants with family so that one person is running around keeping Ayla company while the other person still has other family members to eat with. Birthday parties or gatherings are challenging as well. Ayla does not like to be inside restaurants or people’s houses, so we don’t stay very long. Our social circle has gotten smaller because a gap naturally formed when we realized that no one really understood us. But after we told our group of friends about Ayla’s diagnosis, we’ve received much moral support from unexpected people and friends. We’re really grateful for that.

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– Lack of time for anything – I’m strictly speaking for ourselves here. Although I’m a SAHM to a toddler, having to cook and feed Ayla every two hours while she’s attached at my hip 24/7 and not able to play on her own takes up 98% of my time. A lot of other moms have a hard time relating to me or understanding how it was like for me. People had a hard time understanding why I never had time for anything being a SAHM of just one child. I think most people still question that even now, which makes me feel very misunderstood and sad as well as unappreciated.

I think it’s hard to imagine what it’s like to have a child with autism, or what a day in their life is like unless you’re the child’s caretaker. It seems like the common denominator among families with special needs children is lack of time. I’m sure it differs from child to child and from family to family, but for the most part it is probably harder on families with a special needs child than one without one. There is so much energy and effort that goes into taking care of one special needs child that not much is left at the end of the day to take care of anyone else, even yourself. At least in my personal experience with Ayla it has been very challenging, both physically and emotionally.

I want to share this article written by a special needs mom. I can relate to most of what she wrote in that article myself.

What are some great moments or breakthroughs you’ve had with Ayla?

– Intelligence – Our Developmental Intervention therapist told us Ayla is one of the 2 smartest kids she’s ever had in her career. She is pretty bright and sharp all around. She may soon outsmart us if she hasn’t already! She picks up subtle social nuances when watching cartoons or children’s videos, and she knows exactly when to use those reactions or phrases at the right time/occasion. She also picks up and repeats a person’s pitch and intonation very accurately, sometimes giving me chills because it is so accurate. We don’t know if she has perfect pitch yet, but I wouldn’t be surprised if she did!

– Problem Solving Skills – Ever since she was a baby, we realized she had really good problem solving skills.  Whether she was playing with her toys or trying to get something done, we could tell how she would work things out in her mind and then orchestrate the actions required to get the outcome she wanted.  A good example of this happened just this past weekend.  We were walking towards the Children’s Museum and she kept asking me and my husband to pick her up, but we refused. We kept on walking, hand in hand, daddy on one side holding the diaper bag and a drink in one hand and mommy on the other side of Ayla.  Then she suddenly stopped us and said “mommy drink” while pointing to the drink daddy was holding. I just assumed she wanted me to take back my drink, which she does from time to time, and makes me drink it in front of her.  Once I took the drink she looked at daddy with arms up and said, “Daddy up” meaning “Daddy, pick me up.”  She realized that mommy wasn’t going to give in and pick her up, and Daddy, the easy target, wasn’t able to pick her up with one hand while the other was holding the drink. So she orchestrated this whole scenario in order to get Daddy to be able to pick her up.  We thought it was hilarious!

She is also very good with electronics. Once she sees how something is done, she’ll remember it and even find how to do new things on her own.  Sometimes she brings up features that we don’t even know how to do ourselves, and both my husband and I are pretty techie! She happened to see me use the voice search function on my iPhone’s YouTube app, and since then she’s been trying to use it to search for her videos! Unfortunately her pronunciation is still not great so it doesn’t work too well for her! Another time my husband changed the brightness on the iPad to the lowest setting. Ayla she said, “uh oh, what happened?” Then he watched her flip the pages of apps on the iPad, find the exact folder that “Settings” was in, click on Settings, click on Brightness and increase the brightness to the highest setting!  There was no hesitation on where each icon and each setting was located. It blew us away!

– Memory – Her memory constantly astounds us – last month she memorized my phone number without us having to teach her! She memorized it by simply hearing me say it to other people like when I say it to the store clerk so that they can look up my member savings account. When my husband picked up the phone and started to dial numbers she ran over to him and started to say my phone number. At first we thought they were just random numbers, but then we realized it was my cell phone number that she was saying! She also memorized the Korean fonts on my phone for my family contacts as well as the English names ever since she was 2, and she knew exactly which font/names on my phone corresponded to which person.

– Visual and spatial organization/memory – When she was a baby and was just starting to say a few words, I realized that she had really good visual recognition of objects and pictures. For example, when she saw a picture of a dog, she was able to recognize other types of dogs in different shapes, sizes, and forms on TV, in real life, in different types of book drawings, etc. She was able to generalize objects very well in that aspect, and at the time I remember being very surprised and amazed at that ability. She also recognizes where we are going by noticing street landmarks. One time I was driving home but I told her we were going to the playground, and she recognized that we weren’t heading towards the playground and started to immediately cry. You can’t fool Ayla!

– Level of awareness/attention to details – Ever since she was a very young baby starting at around 5-6 months old, she was extremely keen to details and changes in her surroundings. If I put up a new picture on the wall she would notice it and constantly look at it, sort of telling me that she noticed it even before she was able to speak or grunt. Whenever I held her she would lean towards the object that was new to her surroundings. At that time I was very surprised that she was aware of such things at such a young age. It was scary! But I’ve noticed that Ayla has always been very aware of everything around her at an age where most kids at that age aren’t even capable of that level of awareness.

– Perfectionistic/OCD – she has her own perfectionistic ways and tendencies. Certain things have to be a certain way in her mind. If she saw a salt and pepper shaker on the table, then she always has to see them on the table. Coloring seems like a good example. When I first exposed her to coloring, I colored neatly within the lines to show her how it’s done. She tried coloring but when she realized that she could not replicate what I did, she stopped coloring and still refuses (and cries when forced ) to color anything. The same goes for anything, as a matter of fact. If she realizes that someone else does something better than her, then she will refuse to do it herself. Dressing herself, feeding herself, coloring, and the list goes on and on. I wouldn’t call it a great moment or a breakthrough per se, but it was very shocking to realize that she could be this perfectionistic and aware of things at such a young age.

– Talking – She just started to put 5-6 word sentences together and verbalize her needs and wants more ever since she turned 3. And ever since she started preschool, her conversational skills improved greatly!  Remember she had no conversational skills other than scripted speech!  She is now able to correctly answer questions such as “what did you do at school today?”

– More Affection – Between the time when she was 2 1/2 and 3, she started to openly show more affection. She began to put her arms around my neck to hug me and she would say “I love you, mommy” on her own accord without me prompting her or having her repeat after me. You can imagine that the first time she actually said “I love you” just completely melted my heart, especially coming from a child who wasn’t as verbal and affectionate as most children! This was also true when she first kissed me! She is still very particular of whom she’ll kiss and where. She will mostly kiss me on my lips, but hardly kiss anyone else on the lips. Prior to turning 2 1/2, she wasn’t very affectionate towards anyone but me, but even to me she was just clingy and not affectionate per se. Also prior to her turning 3 she would barely smile or laugh out loud. It was such a rarity to witness her smile or laugh, that whenever she actually did, we totally cherished it. Prior to Ayla turning 3, we just thought she was a very serious and intense baby. She wouldn’t smile or laugh at things that most people would smile and laugh at. Since she’s turned 3, she’s been blossoming almost into a new child. She’s become much sillier than before, joking and playful, smiling a lot and laughing out loud a lot as well. It’s been such an incredible experience to finally enjoy my own child’s smiles and laughs! This year has been by far the best year for us in terms of breakthroughs!

In the next and final installment of this series, mamapink shares her advice. You can follow her story on her blog and her instagram @yjk76.