Our Journey Through Autism

A Mixed Bag

I think what’s making J’s diagnosis not so clear cut is his inconsistency. He is such a mixed bag; sometimes he shares wonderful interactions and other times he’s immersed in his own world. Even Dr. R said that she sees some behaviors that scream autism and others that contradict it. If you were to look up the word “inconsistent” in the dictionary, you’d find J’s picture! I’ve been asked a lot of questions about his behaviors recently as we seek for answers and I’ve found myself responding to a fair few of them with “sometimes”. He’s very hit or miss, off or on. There’s not a whole lot of gray.

How do you bear the burden of making decisions for your children with the knowledge that your choices will impact their future? There doesn’t seem to be anything more than doing what you feel is best at any given time with the information you have and trusting God to use your decisions to benefit those involved. We’ve had to make a lot of decisions recently surrounding how we want to proceed with J’s care. These have not been made lightly. The decision to let go of his home OT took me months to reach. We’ve decided to try the outpatient OT setting and have found a wonderful clinic. He had his evaluation on April 10th and we return for the results and to discuss his treatment plans on May 1st, his second birthday. We’ve decided to continue with his in-home speech therapy every week; she is wonderful with him and is willing to be flexible in her approach as he needs it. We’re also gaining an in-home special educator through CDS to come at the least every week and work with his behaviors and life-skills. And the final and most difficult decision to reach was whether or not to pursue the official autism testing, the ADOS (autism diagnostic observation schedule). I don’t want my son to be pigeonholed or labeled and at the same time, I feel desperate for answers. What finalized the decision to move forward with the testing is the pressing possibility that we may be relocated in another month or two, depending on where my husband can find work after he graduates. If that is the case, we will have already established a baseline for J and that will help immensely in transferring his care. I hate starting over.

J had the ADOS testing on April 15th and we will be going back for the results on April 19th. The test needs to be written up and scored and Dr. R wanted a chance to speak with his speech therapist to get another piece of the picture from the perspective of someone who has been working with him for a longer period and in his own environment. If there’s something I’ve come to learn time and again, it’s that the waiting without knowing is what breaks you down.

In other news, J has recently wanted to start breastfeeding again. He was breastfed from 6 weeks until 6 months when his intestines stopped functioning. Neither of us were ready to break that bond and I have felt the absence of it since then, like a piece of myself and our mother-son relationship was missing. He was switched to a medical formula and this allowed his intestines to eventually heal so I tried to take comfort in that. When his brother was born 10 months ago, I was pumping  while he was in the NICU and was running out of storage room at the Ronald McDonald house where we were staying (again; we were there for Mother’s Day 2011 with J and Father’s Day 2012 with C). I decided to try reintroducing J to my breast milk and see how his intestines handled it. To my relief, he did phenomenally well and started to drink more throughout the day and was less dehydrated. I tried to offer nursing to him again then and since then but he has wanted NOTHING to do with it so I have continued to pump for him and nurse his brother. I had all but given up the hope that he would ever nurse again, when out of nowhere, he seemed interested in trying it. It has been very successful, to say the least. I feel that it is a way for him to connect emotionally and he seems to be more secure since rekindling this bond. I feel complete as his mother again. I’ve been able to recapture moments I never thought I’d share with him again.

CDS Evaluation

Child Development Services (CDS) came out to the house for another evaluation. The last time they were here, J was 11 months old and that was almost a year ago. CDS uses the Batelle Developmental Inventory to determine eligibility for early intervention. The assessment tool evaluates 5 areas of development: Motor, Cognitive, Adaptive, Social, and Communication and scores the child as above average, average, mildly delayed, or significantly delayed. At 11 months old, here is how J scored:

Motor: Low Average

Cognitive: Average

Adaptive: Significantly Delayed

Social: Average

Communication: Mildly Delayed

And today, at 22 months old, he scored:

Motor: Average

Cognitive: Mildly Delayed

Adaptive: Significantly Delayed

Social: Mildly Delayed

Communication: Significantly Delayed, with receptive<expressive

This assessment earned him the diagnoses of Delayed Milestones and Global Developmental Delay

They also used the Modified Checklist for Autism in Toddlers (M-CHAT) and the results show that he is “at risk for autism” and, if we weren’t already seeing Dr. R (the developmental pediatrician) we would be referred to her for the official autism testing, which we plan on discussing with her at our appointment on Wednesday.

He’s had some bad nights recently, all surprisingly beginning at 1 am like clock work. Last night only lasted for an hour. A few nights ago it was 3.5 hours of inconsolability. We literally tried everything we could think of – reading to him, singing to him, rocking him, climbing in the crib with him, bringing him in bed with us, giving him a bottle, laying on the couch with him, watching tv, tylenol (for teething), music. Eventually he wore himself out. Those type of nights break my heart.

Us Against The World

Ever had a moment where it feels like it’s you against the world? Yea, that’s about how I feel when it comes to finding help for my son. And why is it that your own family and closest friends seems to be the most resistant and hurt you the deepest? You would think that family should be 100% on your side yet I find that they are my main opponents. Why are they the least accepting? Why, whenever I voice my concerns, am I met with “You’re over-analyzing everything” “He’s fine” “I don’t see it” “You’re just looking for something to be wrong” “But he’s so smart” “Lots of kids do that” “You’re over-reacting”…?

As if that isn’t enough, here’s a snippet from a conversation with a particular family member:

“I also need to go to Woolwich to check out a therapy place for J but that shouldn’t take long”

“He needs a therapist now…? Sarah he is only 2, he can’t seriously have anything to talk about…”

“Occupational and speech therapy silly”

“Dude you are blowing his life outa proportion. He is going to need a psych therapist later in life, he is fine Sarah”

“It’s nothing new. I fired his home therapist so I need to find him a new one. And his doctor disagrees with you.”

“You just like finding things wrong with him. It was the same way with you way back when.”

“I’m sorry you feel that way. I am just doing what is best for him. If he does have autism then I am not going to sit back and ignore it like an ignorant uneducated person would. I am going to do what I can to help him manage it and reach his full potential. And if he doesn’t then I will know there is nothing to be concerned about. But I will not be ignorant because that hurts no one but him.”

“and see, now your blowing this convo outa proportion. my friends brother didn’t say a word till he was 4…he didn’t go through speech therapy or anything and can talk just fine”

“It’s not his talking that is concerning. You are obviously not educated about early childhood development and intervention so to try and explain it to you is pointless. I don’t need your approval”

 

Is there no such thing as validation anymore? Validation that yes, I am concerned. Yes, there very well may be something wrong. Yes, those are not normal developmental behaviors. Yes, you are doing what is best for your son. Who knows him better than I do?! This mother’s intuition thing is like an icy grip on your stomach, screaming “something’s not right”. Yes, you question it, yes, you try to suppress it when others seem to doubt your concerns, but no, it does not quiet and does not abate.

How?

Why is it that the evenings are when I feel the most overwhelmed? Is it because life finally gets a chance to catch up to me? J has been such a handful this past week! You ever heard of the terrible twos? Try having a teething (almost) 2 year old with autism! I’m running out of safe places for him. He’s learned to escape almost everything but his crib. I’e also had to remove a bunch of his toys that he was being unsafe with (such as his slide). It’s so frustrating because he just doesn’t understand “No” and he doesn’t learn from pain; he lives so much in the moment that by the time he does something again (like touching the hot wood stove), he’s already forgotten what happened the first time he did it and why he should probably not do it again. And I can’t, for the life of me, figure out how to teach him that we do not hit or bite our little brothers! How do you teach or discipline a child like mine? The only tactic I have for him right now is redirection. Where do you go to learn how to best parent your special needs child? Books? Websites? Mars?

Even though I know better than to drown myself with Google searches, the desperation for information that I feel overwhelms any other sense of judgement. Through my searching, I came across a great description of autistic symptoms that I feel fits my son the best out of anything I’ve found so far. The behaviors that relate to my son, I’ve marked in bold.

http://www.nlconcepts.com/does-my-child-have-autism.html

“…THE ANSWER

Every child is unique but we’ll do our best to help. The following descriptions portray some COMMON behaviors in children on the spectrum. It’s unlikely that your child will display all of these. However, if you’re concerned enough to be reading this and you can relate to some of the descriptions below, I recommend you get an evaluation right away!

Your child at play

Your child has an unusual method of play. Toys are played with in the same way and there is very little imaginative play. Your child might repeatedly make his train go around the track and then crash into a tree. Any suggestions to alter this are usually rejected. Even though your house might resemble a mini Toys R Us, it strikes you as odd that your child prefers spinning the stroller wheels to all his toys. You might also find that he spends large amounts of time lining things up. Cars go next to each other, side by side. Crayons are lined up together, sometimes in size order. Stuffed animals are arranged in a row. Disturbing any of his arrangements can cause extreme distress and your child will insist on fixing it.

Having fun

Your child is happily playing with his train. While a typical child will constantly turn around to see what you think, your child is interested in his toy, not your reaction. Typical children constantly bring you things, point to things and show you things. Children on the autism spectrum might bring you a toy because they want you to wind it up constantly, but they’re not interested in what you think about it. They are simply getting their needs met so they can continue their game.

Speech

Children with autism typically have delayed speech. They might not be verbal at all, saying very few words and making sounds. Some children might have a lot of words but not use them in a typical manner. You might find your child “echoing” words that you say. He might repeat lines from movies over and over. He might label objects but not string words together. For example he might say words like “juice” but not “I want juice.” Your child might understand exactly what you are saying but isn’t able to express what he wants. He might drag you to the fridge if he’s thirsty rather than ask you for juice. He may get pronouns mixed up and when asked a question like “Are you hungry?” might respond by saying “You’re hungry” rather than “Yes, I’m hungry.”

Your child pays attention to sounds

While most people don’t pay attention to the number of airplanes that fly over their house every day, your child might notice every one of them. He is either fascinated by the noise or he blocks his ears because it’s too loud. You’ve also noticed that he has selective hearing. He often doesn’t seem to hear his name or look up when you call him, but softly mentioning his favorite DVD has him running from the next room.

Strange body movements

Your child has some strange body movements. You can’t figure out if this is cute or concerning. Your child might flap his hands when he’s excited. He might walk on his tip toes. You might have caught him staring at his fingers or flicking them in front of his eyes. He might have some other movements. He doesn’t do this all the time but its frequent enough to keep you wondering if it’s normal.

Temper tantrums

While all children have temper tantrums your child definitely seems to go overboard. The smallest thing can set him off. In attempt to console him, you find yourself scurrying around in frenzy while you offer him juice, food or his favorite toy. Despite all efforts your child does not calm down easily and you begin to dread these moments. You become fearful of going out and do everything in your power to prevent the storm before it hits.

Physical abilities

Your child might be clumsy but you are amazed at how fast he is and the ability he has to climb. You turn around for a moment and suddenly notice that your child has got to the top of the fridge. “How did he do that?” And why didn’t he just ask for the banana he saw up there? On the flip side, your child might have delayed physical skills. “Why can’t he jump? Or skip? Or walk up the stairs foot over foot? Why is he so poor on the playground?” you wonder to yourself.

Food preferences

“My child is the world’s fussiest eater!” This is a common sentiment of parents on the autism spectrum. Your child might not agree to try anything new. Almost everything is distasteful except the five foods he eats. He might like only crunchy food or only soft food. Just because he likes chicken nuggets at home, doesn’t mean he likes them in a restaurant. If the recipe varies even slightly, your child will notice immediately and go hungry instead.

 Attention to detail

Does your child notice the tiniest of things? A crack in the wall or a piece of lint on the sofa might grab his attention. When looking at a book, he might be drawn to the small butterfly on the corner of the page, rather than the main character the rest of the world seems to focus on.

Letters, numbers and memory

 “My child must be a genius” you think to yourself as you smile. He is so good with letters and numbers. He knows the whole alphabet and you didn’t even teach him. He amazes you with his ability to count backwards and forwards. You also might notice that he has an incredible memory. He jogs your memory about things you have long forgotten. He remembers books and DVD’s by heart after listening to them or reading them once.

Self help skills

Typical children beam with joy at your delight when they button their pants. Children with autism often don’t share the same social motivation. The struggle to zip up their coat or put on their shoes simply outweighs the pride in your face. If motivation isn’t the issue, fine motor skills might be the problem. Many children with autism have delays in this area. Pouring juice, turning handles and manipulating small items may be very challenging for children on the autism spectrum.

Attachment to objects

While the child next door likes to hold on to her stuffed teddy bear, your child might prefer his Lego block or his red plastic circle. Typical children can easily be coerced to leave their favorite toy behind, but it’s a different story for the spectrum child. He’s not easily convinced. He seems to feel comforted by having something in one hand or both hands when you leave the house.

Activity level

Your child doesn’t sit still for a minute. You marvel how other parents enjoy themselves at a family restaurant. Your child won’t eat anything, won’t stay in his chair and is likely to behave very badly resulting in lots of “naughty mommy looks” from other customers. The mall is just as bad. If you leave your child’s hand for a second, he’s off in a flash. And it’s no better at home. While you would like to plop down on the sofa, you’re too busy chasing your child around the house to make sure he’s not in any danger.

Fixations

Your child might be absolutely obsessed with things. He might be fascinated by fans, switching the lights on and off, letters and numbers or dinosaurs. Whatever it is, your child could happily spend every minute on his interest if given the chance. He won’t be coerced to play with these things your way. He likes to do the same things with them all the time.

Eye contact and referencing

Since children with autism might look directly at family members but have poor eye contact with others, it’s a good idea to ask a teacher or friend if your child makes eye contact with them. You’ve read about social referencing but what does that mean? Try pointing to something behind your child and see if he turns around to look. Gasp at something in the opposite direction. Does your child want to know what sparked your reaction? Typical children will be curious or even afraid if they think something might have alarmed you.

Unusual responses

Children with autism often respond to normal events in strange ways. Spilling his juice might cause him to fall to the floor absolutely devastated. Someone sneezing might cause him to laugh hysterically. Loud noises might have him block his ears and cry. He might not seem to understand obvious danger and you’re afraid he’ll get hurt. When it comes to discipline, nothing you’ve read ever applies. You wonder if your child even understands the word “No.” He seems to find it funny or not get it all. You spend a lot of time puzzled over your child’s behavior and reactions.

Sameness and repetition

Children with autism like things to be constant. He wants to drive the same route to Grandma’s house and can get very upset if you change course. He might eat cereal for breakfast every morning and be very reluctant to change this. He likes his routines and does not welcome change or appreciate surprises. You could face a major meltdown by saying “OK. Let’s go!” You’re far better off giving some notice such as “In five minutes we’re going to the store.”

Touch

Your child is sensitive to textures. Tags inside clothes are unbearable. Even seams in socks can bother him. Sometimes he likes to touch different textures. Running his hand down the wallpaper or feeling your silky shirt intrigues him. Sometimes he recoils when touched. Alternatively he might crave being hugged and squeezed and he might pile bean bags and pillows on top of himself.

By Jenē Aviram This article is property of and copyright © 2003-2009 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner – Jene Aviram and a reference to this site http://www.nlconcepts.com” 

Pieces

The sleepless nights are catching up with me and I can feel the weight of every hour I’ve spent lying awake, drowning in the ferocious current of my thoughts. In church this morning, I had a profound sense of déjà vu, transporting my back 2 years ago to the aftermath of receiving our then unborn son’s diagnosis of gastroschisis. I felt like a zombie, going through the motions of life with my mind elsewhere, consumed with worry about the unknown. It’s these defining moments that change the course of your life in the blink of an eye. Who knew that a diagnosis could have such an iron grip on every aspect of your being.

We’ve had 4 days to process the news that our son J may have autism. Yes, I was aware that he has delays and sensory issues and quirky behaviors but my suspicions never led me to this conclusion. I was prepared for the developmental pediatrician to confirm what my family, friends, and even J’s current therapists have told me time and time again over the last year: that I was being an overly-concerned mother and reading too much into nothing at all. Even with the constant comments of “lots of kids do that” or “you’re making a mountain out of a molehill” or “he seems fine to me”, my intuition as his mother continued to eat away at my conscience and drove me to finally  seek out the opinion of a developmental specialist. After almost 2 hours with Dr. R, endless questions, and first hand observation of his behavior, she expressed her concerns of autism and we formulated a plan. She would like Child Development Services to come to our house for an evaluation. We’ve already met with CDS twice before, at 4 months and at 11 months, so it was just a matter of calling and requesting to re-open his file and schedule another evaluation. Dr. R would also like to see both my husband and I a month from now to check in and discuss whether or not we would like to move forward with the official autism testing.

Receiving the news seems to have colored the way I see J now. It’s not like I see him as damaged or less than I thought of him before, it’s more like I see him more clearly. Every quirky behavior seems to be magnified now but I am also finding myself more patient with him too. One thing I do not what to end up doing is lowering my expectations of him.