Look What I Can Do!

“Watch me!  Look what I can do!”  How many times have you heard it from a preschooler as they build a block tower or crash their cars together?  It is something I had heard a thousand times from my other children but never from Tate.  Why? 

As soon as I got the tentative diagnosis of autism from Tate’s pediatrician I was reading books that told me “early intervention is the key.”  I jumped on the phone trying to find help for Tate.  It seemed the developmental pediatricians, all qualified to give the final and necessary diagnosis and recommended treatments, had waiting lists of six months or more.  How can a parent wait six months when all the books say “move quickly” and I knew time was wasting?  There was one developmental pediatrician in my area I found who had a waiting list of ONLY three months.  I made an appointment but I also insisted I must talk to his nurse immediately.  I would not take “no” for an answer from the receptionist.  The nurse had mercy on me and called me back.  I had lists of questions written down to ask, and as the nurse and I talked, I began to sob.  The compassionate nurse told me she would have the busy doctor call me and I specifically remember her telling me not to waste my precious phone call with him crying.  I would have a very few minutes of his time to ask for his advice and then I would have to wait three months for our appointment.  He called me between his appointments that same day.  He was in his car on his cell phone and he told me he was very pressed for time.  I will never forget that call.  He was kind but he did not candy-coat anything.  He asked me some really hard questions.  He asked me if Tate had ever pointed out an airplane in the sky to me.  I had to think for a few seconds and answer “no” but was immediately horrified that I had never noticed this on my own. He asked if Tate had ever pretended to talk on a phone. He asked me if Tate had any relatives (especially older brothers or cousins) without empathy for others.  He asked me if Tate’s siblings or cousins ever got caught up in repetitive behaviors or had poor social skills, anxieties or odd habits.  He asked me if Tate could follow my point; meaning: could his eyes follow my finger to see what I was pointing at?  I was not sure.  I remember thinking: “How could I not know?  What kind of mother was I?”  He asked me if Tate had ever said “watch me” or “look what I can do” and I had to say that he had not.  It was one of my first lessons in joint attention and what that means.  Tate had no joint attention.  Joint attention is “the shared focus of two or more individuals on an object.”  People draw attention to things through eye gaze, pointing, or commenting.  Joint attention is essential for the development of communication.  Joint attention is one of the earliest noticeable differences in the typically developing child and the child with autism.  If I had known these things, perhaps I could have helped Tate much sooner.  Know an infant?  Watch for the developing joint attention.  Early intervention is the key.

That phone call from that doctor opened my eyes to so many things. He had asked me if Tate had relatives with characteristics similar to his.  I had said that he did not but later that evening, when talking with my husband, I realized I had answered some questions incorrectly.  After giving it all more thought I remembered a lot of things that had not occurred to me while visiting with that doctor.  There was a little boy in my family who had entertained himself with repetitive behaviors for long periods of time, although he had outgrown it.  Tate did and does have relatives who suffer from anxieties.  There were little boys in my family who had not developed empathy skills appropriate for their age and there were little boys in my family who had very poor social skills.  Many of those things have been overcome with age, teaching and maturity.  I, myself, had been a very anxious child, shy to an extreme, with some of the characteristics of autism. The difference between Tate and those with a few quirks is joint attention.  None of us could ever be diagnosed with autism.  We had “enough” joint attention.  We have “enough” theory of mind.  Have an infant?  Watch for the development of joint attention.  Early intervention is the key.   No one can say it often enough or loud enough.  Early intervention is the key.

It's everywhere. Do you recognize it?

Have you ever noticed when you buy a new car, suddenly you see that particular model and make all over the road?  Or, when you are thinking about getting a particular breed of dog, that breed is on leashes all over town?  It isn’t because people have suddenly gone out and gotten the same thing you are interested in, but it is because you are more “in-tune” to that particular thing and just noticing it more.  This is what happened to me when Tate was diagnosed with autism, and then again when I learned about Fetal Alcohol Syndrome.  I didn’t even know what autism or FAS were, really. Then suddenly, I was surrounded by people on the autism spectrum and by people whose mothers (in my mind) had to have consumed alcohol while pregnant.  I saw, and continue to see, the quirks that are stereotypic of autism and FAS, all around me.  I can recall people from my childhood who had many of the same issues Tate has.  Children and adults I have known, in the past and present, are always under my scrutiny.  Half the world seems to have autism, or at least, some of the characteristics, and the other half have been affected by alcohol or drugs in the womb.  Of course I am exaggerating, but I do see it almost everywhere I go.  It is because I am so aware of all the quirks Tate and Sydney have, and for now, it is what I am most interested in.  Autism and FAS are my passion right now as I try to help these two precious children that have been entrusted to me. 

Think back to your school years.  Do you remember the awkward kid(s) who just didn’t fit in anywhere?  They didn’t know how to start a conversation.  They probably didn’t dress stylishly and maybe didn’t even comb their hair.  They might have been much more comfortable with adults than peers.  How about the kid who ALWAYS wanted to talk about “Star Wars” and nothing else?  You probably knew a kid with autism, aspergers, or at least some of the characteristics.

Shawn and I ate at a restaurant a couple weeks ago.  Sitting at a table next to us was an elderly couple with their two grown sons.  Both sons had autism.  Autism is easy for me to recognize now.  I saw the stereotypic stimming, the limited eye-contact, the poor social skills, and neither of the men seemed to feel the need to wipe their chins.  Their mother made sure the chins were wiped.  Tate wasn’t with us that night.  I wondered if the mother of those two boys would have looked over at our table and saw the same things in my son I was seeing in hers.  I wanted to go over to their table, pull up a chair and introduce myself, ask her some questions about her experiences, and meet another mother who could understand some of my feelings and experiences.

I found, getting a diagnosis of autism for my child was like becoming a member of a club, “the autism community,” some people call it.  We all have things in common.  We talk about autism (A LOT) and we are always comparing notes, looking for ways to help our kids be successful.  Some of the best friends I have, I have met through Tate and his therapies.  If I were asked to think of any benefits of having my child diagnosed with autism, I would have to start naming people.  I have been inspired, humbled, educated, and encouraged by many of the people we have met along the way; some of whom have had a much harder road to tread than I.

Years ago, when I first heard about Attention Deficit Hyperactivity Disorder (ADHD) I was a young mother of several typically developing children.  I believe I first heard about ADHD on a news program.  My children were well behaved and they responded well to discipline.  It is all I knew.  I had typically developing children.  I thought ADHD was a label being put on children to excuse their parents for never teaching them how to behave.  I believed there were a few of them with legitimate issues of some kind, but I just could not understand why the majority of these kids were not able to behave like typically developing children did.  I’m embarrassed that I ever had that opinion.  Not all these children have the same reason for their inability to sit still and concentrate and learn.  I don’t know if doctors are blaming ADHD on genetics or toxins or alien abductions (haha) but I have seen a lot of kids with ADHD since I began volunteering at the grade schools in the past few years.  Most of them are sweet kids, with great parents, and they try really hard to behave.  They just cannot sit still and they cannot stay focused on the tasks at hand.  Sydney’s ADHD probably came from her FAS, but not all kids with ADHD were exposed to any drugs or alcohol in the womb.   

I also used to think the world was over-medicated.  Now, I believe medication is a tool that should be used.  I’ve seen so many children the past few years in public school that would probably benefit from a prescription like Sydney’s.  She does not have the ability to sit and focus and she could not learn until she began medication.  Now she can sit and focus and learn.  The medication cannot cure her or even boost her IQ, but it can help her to focus long enough to learn what she can.  Kids like Sydney are not uneducable.  They just need help.  There is potential that cannot be tapped without the help of medications.

In this post and others, I have talked about Tate’s diagnosis and the doctors we saw initially.  The way autism is diagnosed is changing.  The labels given will soon be different.  In recent years a doctor gave a person a diagnosis of autism, aspergers syndrome, or pervasive developmental disorder not otherwise specified (pdd-nos).  A person with aspergers syndrome usually has social deficits and narrow interests, but above-average intelligence. A person with aspergers would not have had a language delay, while a person diagnosed with autism would have had a language delay or even be non-verbal, in addition to their other symptoms.  The diagnosis of pdd-nos is given when the doctor sees many of the symptoms of autism, but not enough to have the diagnosis of autism.  The doctor who diagnosed Tate on the spectrum, when Tate was two and a half, gave him the diagnosis of pdd-nos.  He called it a “high functioning autism.”  Because Tate had a large vocabulary and communicated well for a while and then regressed and lost his ability to communicate, the doctor also said Tate had “regressive autism.”  Because autism spectrum disorders all fall under a huge umbrella, there are categories and subcategories a person can be diagnosed with.  That will soon all be done away with.  I have been reading, beginning in May, 2013, the diagnosis of aspergers and pdd-nos will no longer be given.  To receive a diagnosis on the autism spectrum a person will now have to have a communication delay, and exhibit every other symptom of autism, thus doing away with the asperger diagnosis and pdd-nos.  A person on the spectrum will be autism level one, two or three.  Level one is a person who needs some support, level two will be a person who needs substantial support, and level three will be a person who requires very substantial support.  I believe Tate will be considered level two.  It will be interesting to see how this new way of diagnosing children will affect the help a child receives in school.  The label given to Tate does not change the amount of help he needs or who he is.  Autism spectrum disorder, Level 2 autism, pdd-nos, or special needs; the label is hardly important.  He’s my little boy and he needs help to learn and navigate throughout his day. 

diagnosing Sydney

I told you how I came to discover Tate had autism in my last post. You can read about that here: http://quirks-and-chaos.blogspot.com/2012/04/encouragers-are-needed-be-one.html This post will be about discovering Sydney’s diagnosis. It was a little more complicated. 

When we met Sydney in Russia she was eight and a half months old. She was lethargic and appeared developmentally delayed. We asked a lot of questions and were told they had kept her awake for us, long past her nap time. Then we arrived right after she had fallen asleep so they woke her for us. It made sense. The next day Sydney was different. She was very active but still seemed without any “sparkle.” I was heart sick. I was fairly certain our baby girl was, at the very least, developmentally delayed. We asked a lot of questions. Sydney had been born about a month premature, according to them. We were assured Sydney’s birth mother had not taken drugs or had any alcohol while pregnant. Her birth parents were only “guilty” of being poor. They could not afford to take her home, as they already had two other children to feed. 

We could see 14 cribs in the room Sydney was in, and we could see another room full of cribs too. We saw 3 nurses/teachers to watch over all those babies, so it was apparent to us Sydney was not getting much attention. We figured part of Sydney’s lack of “sparkle” was due to neglect. We voiced our concerns to Sydney’s doctor through an interpreter. He seemed to be the man in charge.  He told us he would hire someone to come in and play with Sydney and hold her for one hour a day if we left him $100.00 to pay for it. That was the best hundred dollars we have ever spent. We were amazed at the difference eight weeks later when we returned for the adoption date. Sydney had a light behind her eyes we had not seen before. She was still not jabbering as a ten month old baby should have been but she was much more alert and interested in her surroundings. I was very encouraged. (I blogged about this again later in more detail. See this link: A Sparkling Personality if you would like to read more.)

Sydney, age One

When we got her home from Russia, one of the things that worried me the most was Sydney’s indifference to people. She did not want to be held and she fought it.  She really didn’t like to be touched at all. I forced myself on her. The first few months I rocked her and held her while she kicked and screamed. After a few months she didn’t hate being held so much but she didn’t seek it out. We taught her to kiss us but it was rote; she also kissed the furniture, the walls and the floor. She didn’t seem to feel pain and she didn’t seem to “need” people. I started researching and found Reactive Attachment Disorder (RAD.) I think she was around two by then. We took her to a Child Psychiatrist and asked his opinion. He asked a lot of questions and watched her play. We were relieved to hear him say Sydney did not fit the criteria for RAD. He thought her issues were just from the first year of neglect. He said we were doing all the right things and encouraged us to keep at it.   

Sydney had a lot of physical things going on so I was taking her to doctors and asking questions. We visited the pediatrician several times then started seeing some specialists. Sydney had some very sensitive skin which was always breaking out in rashes, so we took her to an allergist and a dermatologist for help with that. Sydney’s eyes watered a lot and she seemed very sensitive to light. We took her to get her eyes checked by a pediatric eye doctor. He was very concerned by what he saw.  Her retinas were not orange as they should be, but spotted. They looked like the skin of a leopard, he said. He made us an appointment with a doctor at Children’s Mercy who specialized in the retina. He also urged us to have genetic testing to determine if Sydney’s spotted retinas were linked to a genetic disorder he named. Doctors at Children’s Mercy did the genetic testing and found no problems. The specialist looked at her retinas and said they were abnormal but would not cause her any problems. However, based on many other things those doctors saw, they were able to give Sydney a diagnosis. It was apparent to them that Sydney’s birth mother had consumed alcohol. They pointed out all the small things other doctors had ignored, and said those things were signs of Fetal Alcohol Syndrome. Sydney lacks toe nails on her smaller toes.  Her eyes are mismatched in size. Her head size is very small.  One of her elbows hyper-extends. Her pain threshold is extremely high and she is hyperactive. All those things were probably caused by an exposure to alcohol in the womb. They also suspected Sydney had been born more than one month premature. 

We then learned many symptoms of RAD are the same for FAS and often parents “guess” at RAD before they get an FAS diagnosis. One of the doctors also called Sydney “hyper vigilant.” I had never heard the word before but it fits Sydney better than any word I have ever heard. She is so watchful. She notices everything. If a person changes their shirt or shoes and walks back into the room, she asks them about it. If someone rattles a candy wrapper in the next room, she hears and knows what they are doing. If I move a small item from a shelf, she notices immediately upon entry into a room. When we go to her doctor appointments in Kansas City, Sydney can tell me where to turn, yet I still rely on the GPS to find the office. She remembers every detail about everything and she cannot be fooled. It is unlike anything I have ever seen a child do. 

When Sydney got the diagnosis of FAS she was still a toddler. In some ways it was hard for me, like the night I found autism on the Internet when Tate was a toddler. However, in other ways it was a relief.  If you know what is wrong then you can figure out how to deal with it. I had tried everything to teach Sydney how to behave and had failed to make much progress.  I had read so much about autism and I knew what I needed to do to help Tate. I figured I would go home, read books, talk to some experts on FAS, and form a plan. It didn’t go as smoothly as I hoped. Tate is quiet and easy to teach.  Sydney is loud and cannot sit in one place for more than a minute so she is hard to teach. There is not much written about FAS either. There isn’t a recommended, research-based, early intervention plan to follow like there is for children with autism. I have had to “wing it” a lot. There were a couple of years between receiving the diagnosis and trying medication for Sydney.  It was rough. I lost my cool daily, even hourly.  I embarrassed myself often in front of my older children by doing a lot of the wrong things with my littlest one. I loved her but didn’t know how to deal with her. I went to bed every night exhausted, physically and emotionally. I would wake up every morning determined to do better.  By mid morning I was at my rope’s end again. One of the things I told myself constantly was, “A bad day here is better than the best day Sydney would have had in an orphanage.” That way I felt less guilty about not being perfect and not giving her the patience she needed. 

I used to get mad if I thought of the lies we were told about Sydney and her medical history. I used to get mad at myself because I did not educate myself about the signs of FAS, and I trusted people I did not know. The doctors in Russia surely know what the signs of FAS are. I assume they lie about the babies’ health so they will be adopted. At Children’s Mercy the doctors told us they were seeing lots of babies from Russia with FAS.  I don’t get mad about it anymore. If I had known better I would have “shopped” for a baby and our lives would be different, I know. Then where would Sydney be? I could not love Sydney more than I do now  I adore her. I cannot imagine my life without her. Would I “fix” her if I could, and heal the brain damage and other things alcohol did to her body? Of course I would!  Would I trade her today for a different eight year old? No, not any sooner than I would trade one of my other six children or you would trade one that was biologically yours. Sydney is a blessing to me.

Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! You can also find us on Facebook. Look for Quirks and Chaos.

Encouragers are needed. Be one!

I have a lot of stories left to share and new ones developing daily so I will not be running out of material soon.  By the way, if you have any questions about autism, our foreign adoption, ADHD, or strategies that help us cope, feel free to ask. If you want to hear more about any particular topic, let me know. 

When I meet a mom or dad who tell me they just received a diagnosis for their child my heart breaks for them. I remember the night I self-diagnosed Tate with autism.  He was two and a half. The hand-flapping had just started and Tate was withdrawing more and more into his own little world.  He still slept with us, as he did not sleep well at night. Erratic sleep patterns are something many people with autism suffer with. That night, as I lay by Tate, he was whispering. It sounded ritualistic and I asked him several times what he was saying. He couldn’t tell me. He had lost much of his language by that time, and he was often speaking gibberish. It was like a foreign language he could understand and he was talking to someone I could not see. When he was finally sleeping, I got up. I was worried sick, literally. I got online. I started typing in some of the symptoms I had seen. I thought I would find that Tate was mentally ill. Instead, I found the same word over and over: autism. When I read the signs of autism, Tate had almost all of them. I woke Shawn and we talked for a long time. He was able to go back to bed, after a while, but I stayed up all night, reading and trying to find answers. What were we going to do? How would I be able to deal with it all?

This was taken right about the time of the diagnosis.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I remember all the things I should NOT say. I should NOT say “I have thought for a long time there was something wrong.” It is like telling someone who is overweight they are fat. They already know it. How would it encourage a devastated parent to tell them that you have suspected for a long time their child was not developing as he/she should? The parent “knew” too but needed to figure it out for themselves and deal with it before making an announcement to the world. Does an “I knew before you did” attitude really need to be voiced? 

I should also NOT say “Everything happens for a reason.” Think about it.  What is that supposed to mean? I have heard it from people after I lost a baby, after Tate was diagnosed with autism, and after other tragedies. Everything does not happen for “a reason.” God doesn’t reach down and zap people with tragedies or illnesses so others can learn from it. Bad things happen to good people every day and it is not God’s work. If a finger should be pointed, then point it at Satan, not God. Everything does not happen for a reason. Babies do not die for “a reason” and little boys do not get autism for “a reason.” We make the best of these bad situations and learn from them but it is not “a reason” for what has happened. See Rule #11 in My 15 Truths of Parenting Special Kids.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I try to encourage them. I tell them of other children I know with autism and the good outcomes I have seen. I do not tell them about the children I know who are not making progress. If someone you know is diagnosed with a health problem, do you tell them of another person you know who has died of the same thing? I have surrounded myself with encouragers. It is so much easier to give Tate and Sydney what they need when I have cheer leaders. If you are not an encourager, practice! I challenge anyone reading to encourage someone you know, this week, who is parenting or teaching a special needs child. Or encourage a handicapped adult. If you don’t know someone, then look around you. A lot of times you will see people with a special need returning carts at a store, wiping tables at a fast food restaurant, pushing a broom, or stocking shelves. I try to speak to those people as often as I can these past few years. Make eye contact, smile and say “hello” because many people treat them like they are invisible. I used to. One of those people may someday be my son or daughter… or your grandchild. Think about it. 

You might also like: Don't Blink

Note: The morning after I found autism on the internet I got Tate into our pediatrician and he confirmed my fears but was not qualified to give us a diagnosis. The wait to get into a specialist was 3 months. In the meantime, we started early intervention by hiring a behavior consultant and developing a discrete trial program to teach Tate the things he was not learning. I will describe our discrete trial program and what early intervention entails in future posts. I will also describe that visit to the developmental pediatrician to obtain a diagnosis.

Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! You can also find us on Facebook. Look for Quirks and Chaos.