A letter to Lively's class

Dear parent of a healthy "normal" child in Lively's preschool class:

I understand that it is completely normal that a 2-year-old would be curious as to why his new friend at school gets some food, water, and medicine through a tube in his belly. Your child has probably never seen anything like this before, and it may seem funny, or weird, or even a little scary to him.

But you're a doctor, right? So in all your years of training, you must have learned that some people can't eat or drink everything they need with their mouths. And certainly you must want your child to grow up showing compassion and love and friendship to others, even others who may have one too many holes in their bodies. Surely you can explain these things to your child at home, and you can teach him that Lively is a happy, playful, fun, and loving little boy even if he has a small physical difference from your child.

Surely you wouldn't come into Lively's classroom, telling his teachers that your child is coming home telling stories about Lively getting fed through his stomach, and what's the deal with that anyway? And don't the other kids and parents deserve an explanation?

Oh wait. You did do that?!?! You think the class, the school, needs an explanation of what Lively has been through the last 2 years of his life?

Well, go f#@% yourself.

Sincerely,

Lively's mama

Good things

So much has happened. 

Lively started going to Annie's preschool September 6. I was nervous about sending him, but excited too. Pete and I really wanted him to be around other kids and hoped that he would be inspired to eat, play, and connect with some new people. So far, he's done exactly that. The first week or two, he was a little sad when we dropped him off, but now he gets excited on the way to school, walks happily down the long hall to his classroom, says "Hi!" to his teachers and friends, gives me a hug and a kiss and then pushes me out the door. He's talking a lot, mostly single words, but lots of them, so many that I can't even begin to update the list I started a couple months ago. Some of my favorites:

• "Hi yogurt!" with a big smile, when I sat down to give him a snack the other day. (We had been out of yogurt for awhile, and Pete had just gotten some more for him.)

• Annie 

• Jack (the name of our cat, and the word Lively uses for all cats)

• I love you (repeated back to me when I put him to bed at night)

Also on September 6, I took Lively to see Dr. Richard Solomon, who is basically an autism specialist. He's the same doc that I had been hesitant to see because he's in private practice, doesn't take insurance, and costs quite a lot. But I finally made the appointment for Lively with him, because I felt like Lively needed more than what he was getting and because quite a few people recommended him to me. So we went. And here's what happened:

1. Lively was instantly crazy about him. He looked Dr. Solomon delightedly in the face, and approached him to play with him. Lively was so obviously happy and relaxed and joyful in this doctor's presence, in a way that I have never seen him be for an extended period of time with any other provider, that it was obvious this doctor understood my kid. I had to trust him.
2. Dr. Solomon confirmed the diagnosis of autism spectrum disorder. 
3. Dr. Solomon talked with an authority and expertise about autism that I have not encountered with any of the so-called specialists we had seen already. He knows the studies and the treatment options and the theories and the data behind all of them. 
4. He talked to me about prognostic indicators. The two best ones: any speech before the age of 3, and the ability to follow one-step commands. Lively does both. (I said Lively, jump! And Lively stood up with a big smile on his face and jumped.) "This is great news!" Dr. S said. Lively is likely to do really well. He may be able to go to a normal school! He can make friends! He may go to college! He may fall in love and get married and have babies and have a happy life! No one until that day had said any of these things to me. I had asked other doctors, therapists, etc, and they all sort of averted their eyes and said, we'll just have to see. But this doctor, who seems so knowledgeable, is the first person who has given me hope since we started down this autism road. He said, "Lively's prognosis is excellent." Excellent!
5. He doesn't think Lively is cognitively impaired. Lively approached Dr. S at one point and grabbed both his hands (I've never seen him do that before) and Dr. S sort of shook Lively's hands to a rhythm. Then Lively turned to me and picked up my hands, obviously wanting me to do the same thing, so I shook his hands to a different beat. Then Lively went back to Dr. S and grabbed his hands again to do yet another rhythm, all the time smiling, making eye contact, completely engaged with both of us. And Dr. S said, "Look! He's not cognitively impaired. He's smart! He just invented a game!"
6. He offered us a treatment plan. Basically, a therapist will come to our home or maybe sometimes Lively's school, and will teach us how to engage Lively to help him connect emotionally with us, and ultimately with other family members, his teachers, and friends. Instead of meeting certain goals set by a program (for example, teaching him his colors or numbers or ABC's) we stay flexible, follow his leads, base our interactions around the things he loves to do. We focus on social skills and emotional development where other programs put kids through academic drills and try to develop competence in specific skills. The theory behind Dr. Solomon's therapy is that you start by helping build the emotional connection, and the rest (language, cognition, etc) naturally follows. He's been running this kind of program for over 10 years now, and he really thinks it will help Lively. And I believe him.

I can't even explain what it feels like to have been given this hope. We have been living without it for so long now, with our hope being taken away from us little-by-little, that it wasn't until someone trustworthy gave it back to us that Pete and I realized how bad we had been feeling. I can't explain how being able to hope again for things we thought we had lost has changed us. I feel like Dr. S had lifted away a weight that has been sitting on my chest, and now I am light and I can breathe again. Or perhaps fly.

We start with the P.L.A.Y. project in December or January. We are going to have to live on peanut butter sandwiches for awhile to make it work, but we all love peanut butter, so it's OK.

And speaking of peanut butter sandwiches, we started adding gluten and dairy back into Lively's diet, and he's doing just fine. He's eating more and more, probably because he has more choices now. He struggles with some textures, but for flavors that he loves (crackers, pretzels, corn chips, cinnamon cheerios) he manages to chew and swallow with no problem. We're not able to get enough calories and volume in him by mouth yet, and we usually give him formula and water after dinner, but we stopped giving him tube feeds overnight 2 weeks ago, and it's going really well. He's lost a little weight, which scares me a bit, but he's hungry during the day and he's learning how to eat! Now if only we could get him to take his medicine by mouth. Still, good things.

Dear Doc

Katie Pasque, MD
Clinical Instructor
Department of Obstetrics and Gynecology
University of Michigan
Briarwood Center for Women, Children, and Young Adults
Building 2, Suite B
400 East Eisenhower Parkway
Ann Arbor, MI 48108

Dr. Neurodevelopmental Specialist
Helen DeVos Children’s Hospital
Neurodevelopmental Pediatrics
426 Michigan Ave NE Ste 102
Grand Rapids, MI 49503

Dear Neurodevelopmental Pediatrician at the only Intensive Feeding Program in Michigan:

I am writing to you directly because I am getting nowhere by trying to go through the suggested channels. I have been trying to get my son Lively placed on the waiting list for evaluation at your program for one year now. I have spoken to your coordinating nurse at least 4 times. I have left many voicemail messages that were not returned. Last week, the nurse from your program promised that she was faxing a referral form to my pediatrician, Dr. XXXXXXX. Dr. XXXXXXX has diligently followed through on multiple referrals to every specialist imaginable for Lively, including calling your program to try to make a referral himself. Still, we have not been successful in scheduling an evaluation. I am contacting you to ask for your help in having Lively seen by your group.

My son just turned 2 on July 15. At 6 months he started having seizures and was diagnosed with infantile spasms. An MRI showed a right parieto-occipital stroke. He was treated with ACTH for 3 months. He breastfed exclusively for 6 months without problems, and at 6 months when we introduced solids, and also started ACTH, he was ravenously hungry and ate big bowls of mashed potatoes with broccoli and peas. He ate until he was so puffy that I was afraid his skin was going to burst. At 9 months he stopped eating and drinking one day, for no reason anyone can understand. He was admitted to the hospital for dehydration, and developed diarrhea and vomiting. During one vomiting episode, he was on his back and obviously aspirated. He had breathing distress immediately and within a few hours was intubated. ENT scoped him and diagnosed tracheomalacia. After 24 hours, he was extubated, and immediately failed and had to be re-intubated for a week. When he finally came off the ventilator, he refused to breastfeed for days, and when he finally tried, he obviously aspirated. A swallow study confirmed this. An NG tube was placed, but he vomited with every feed, so the tube was advanced to an NJ. He tolerated continuous breastmilk feeds. At 11 months, his NG tube was misplaced (at home, by me) into his trachea. He had a pneumohemothorax that required surgery. Again he was intubated and failed extubation after 24 hours. His airway swelled, and it took the doctors more than 30 minutes to replace his ET tube. During that time he was difficult to ventilate, and he became very hypotensive. He required the ventilator again for a week. Later during that long hospitalization, he got a GJ tube.

After Lively came home again with us, my husband and I were able to transition him from continuous GJ feeds to bolus G-tube feeds over the course of many months. We slowly introduced pureed foods and thickened liquids. Today, a year later, he eats stage 2 purees, and occasionally some soft stage 3 foods. He is able to drink water from a sippy cup. He does not know how to chew, and when we offer solids, he holds them in his mouth and eventually spits them out. His OTs believe that he is not able to coordinate chewing to push foods between his teeth or to form a bolus that he can swallow. He receives around half his calories overnight through the G-tube.

My son’s other medical problems include global delays, likely due to his stroke. His seizures are under control with Keppra, and his EEG no longer shows hypsarrythmia, and continues to look more normal each time. He started walking at 19 months and is steadily gaining strength in his left side. He has fine motor delays, but they are improving with therapy. His cognition appears to be improving as well, as he is increasingly imitating, referencing, and trying to sign and speak. Nevertheless, he meets criteria for autism, and received this diagnosis in April, at age 21 months. He is a very happy and engaged little boy, and although my husband and I understand that he qualifies for the autism diagnosis, we have hope that he will continue to improve so that he no longer carries this diagnosis.

With regard to his feeding, we have hit a wall. We cannot get more than 50% of his calories into him by mouth. He is showing no improvement with his ability to tolerate solids.

I know that my son would not have received half of the care that has helped him if I had not been proactive in getting him the appointments that he needs. I have tried to go through the “regular” channels, but almost always, that has failed me, both at U of M, and now with your center. So I am asking you to please help my son be seen by someone who might help him. We have exhausted our resources here, and need your help.

Please contact me with any questions or advice. I look forward to hearing from you.


Sincerely,
Katie Pasque

To my most special boy, on his birthday

Dear Lively,

You are two!

You started your second year in the hospital, just 2 floors above the place you were born. You were hospitalized 5 times in your first year, but happily only once during your second, and you have managed to stay healthy enough that we have stayed out for 11 months now.

This is a picture of you on your first birthday. We spent it in the hospital. You had presents and cakes, and I gave you a little bit of icing on your lips because you weren't eating at all at that time. I think you liked it though!

Seeing these photos of you makes it feel even more surprising to me that a whole year has passed. You were so different then, in so many ways. One year ago you could not sit up. You basically did not eat at all. You had a G-J tube, which meant either I had to dress you in button down shirts, or I had to cut holes in your shirts so the tube could come through. We fed your intestine directly, and you weren't able to tolerate much more than a dribble, so we pumped feeds into you continuously.

This is a photo from your last readmission to the hospital, when you were 12 1/2 months old. Even though you had the G-J tube, your doctors placed an N-G tube as well to drain your stomach because you were vomiting so frequently. I fought this because your last N-G, placed by me, led to hydropneumothorax, surgery, intubation, failed extubation, and a very scary week in the PICU. In this picture, you are in the hospital, but not in the ICU. We waited, you received hydration through your tube, you got better, and we went home after about a week.

When you recovered enough to go home, you looked like this:

You were still so chubby due to all those months of ACTH. You were pretty uncomfortable, because of the new tube sticking out of your tummy, and also, I think, because you had so many rolls on you that it was hard for you to move around. You just didn't feel well at all. You were taking about a million medications, and you vomited several times each night.

Daddy and I slowly transitioned your feeds from your intestine to your stomach as your digestion improved. We weren't able to find a doctor or therapist who understood what was happening to you, or who could give us suggestions to help you improve, so I got most advice from other parents on the internet whose children were going through similar situations. In early September, when we had completely transitioned to stomach feeds, the big tube was replaced with a much more discrete G-button.

Despite being told that you were aspirating on a swallow study and that we should limit feeds to your G-tube, Pete and I felt you were making no progress in overcoming your oral aversion or in learning to eat, and so we started to feed you by mouth. We gave you thickened, pureed foods, and you spit out 100% for months. We would sit with you for hours at a time each meal, trying to convince you to swallow. You didn't for several months. And you looked like this when  you tried:

Beautiful!

By fall 2010 you were able to sit. You were even able to slide (with help)!

In this picture, you were actually well on your way to slimming down, although it's a little hard to tell. Look at the rolls behind your knees!

During all of this time, you were as weak as a kitten. You tired easily. We went to physical therapy 2-3 days a week. You learned to sit. And kneel. This is a post-sit, pre-crawl photo of you from October 2010.

By mid-November, right around 16 months, you were finally strong enough to crawl. As you developed, we also noticed more obvious weakness on your left side when compared with your right. None of these things are apparent in the following photo, which was taken in November 2010. You look upright and steady.

Your progress through the winter months was slow, but we felt we were heading in the right direction. You strengthened the muscles in your arms and legs. And you learned how to be a snow-dino.

Although you still struggled with food and drink, you learned pretty quickly how to eat snow.

In March, when you were 19 1/2 months, we finally celebrated your first steps. You worked so hard for them! We spent countless hours of physical therapy (not to mention 4 or 5 other kinds of therapy) trying to get to this milestone. When I watched you walk for the first time, I felt a weight lift that I hadn't even known I'd been carrying.

As soon as you started walking, you immediately started to lose your baby weight (and your ACTH weight). By Easter, you looked like this:

You started to eat more and more, but not enough. You were able to take in about half of your calories by mouth, and for the other half, we ran formula through your tube overnight. We realized that you didn't know how to chew, and so we added occupational therapy sessions to try to help. You don't seem to understand how to coordinate using your teeth and moving food around your mouth in order to swallow. Today, you continue only to be able to take in half your nutritional needs by mouth, and you are able to eat only soft or pureed foods.

In April, at 21 months old, you were diagnosed with autism. The worry I had lost when you walked resettled and brought friends. We don't know what to think about this diagnosis. We aren't sure what it means for you now, or what it will mean for you as you grow. The uncertainty is hard on me. I try to stay positive for you, and your happy disposition and smiling face make it easy to do when I am with you. You learn something new every day. This is a picture I took in May of you practicing your dancing:



I look at these photos of you, and still wonder if the autism diagnosis is correct.

Today was a bittersweet day for me, and for Daddy too. You are two! You walk! You eat (some)! You drink (a little)! You are snuggly and loving and happy. But today, when I went to the grocery to try to buy a gluten-free casein-free cake for you (I was sure Whole Foods would have something, but they didn't), I couldn't help but think, the life I planned for you included cake and ice cream. It didn't include g-tubes, intensive early intervention, feeding programs, autism studies, hospitalizations, and seizure medication. Tonight, we ate ice cream bars for dessert (you had a chocolate-covered coconut milk bar) instead of cake, and no one seemed to mind.

My wish for your second birthday is that when we have to make compromises in the future, it be no harder than replacing cake with coconut milk bars.

Happy birthday, my love. May you continue to be as happy as you are today, despite the challenges you face, and those to come. You are my sunshine.

Love,

Mama 

Vacation

I was off work last week (Pete is off for the summer) and since we just moved, we spent the week unpacking, at least a little, and generally trying to get settled. Lively had several appointments, including his new Early On Young Twos group, which is now twice a week, and I spent hours on the phone trying to coordinate speech therapy (I've been fighting with insurance and for new approval for this since March) and looking into intensive feeding programs. More on this another day, but suffice it to say, I'm beyond frustrated. However, Pete and I both got to spend a lot more time with Lively this week, and we really noticed what we are hoping is developmental progress. Here are the things I can remember right now:

1. Lots of uh ohs, used appropriately, or, perhaps, a bit sarcastically. (Ex: Lively throws spoon full of oatmeal on the floor. "Uh oh!")
2. More repetition. This morning as I was telling Pete that I put applesauce in Lively's cereal, he said, "a-poo" several times.
3. He has been signing "eat" appropriately consistently! If he's hungry, he'll walk to us and sign "eat" by holding the tips of his fingers to his mouth. This is a huge step in his language development: he wants something, he formulates a word in sign language (or sometimes verbally), and then uses it correctly. For his other words, check out my list on the right side of the page.
4. Lively has learned to flip the light switch on and off with one finger. Pointing is a skill that has not come naturally, and we have worked on it endlessly. The work continues. But he loves to flip the switch, and he does it with one finger.
5. When he wants food that's out of his reach, or a toy, he reaches for it instead of throwing himself on the floor and having a tantrum. We still have plenty of tantrums, but he's figured out that he can reach toward something to show us, "I want that." Most 9 months old do this, but Lively just learned it.
6. We've taken him out in public, at times to very crowded places, and he's done generally well. Pete took him to the last night of Top of the Park (part of Ann Arbor's summer festival) tonight, and it sounds like he only had the normal 2-year-old kind of tantrum (when he wanted to go in one direction and Pete needed him to go in another). Yesterday we took both kids to the Ann Arbor Farmers' Market, and he did great! It was so crowded we could barely make our way through, but Lively rode happily in the stroller with Annie and calmly took in all of it. A woman even walked up to him and baby-talked to him about how cute he is (she is so right!) and he gave her a winning smile.
7. We've also had friends over several times in the last week or so, and Lively has given lots of high fives, hugs, and has even allowed himself to be held for around 5 seconds by someone other than Pete or me. When kid-friends come over, he is delighted and follows/chases them. He wants to play!
8. Lively is babbling a lot! Sometimes he sounds like he is speaking another language that I don't understand fluently. He may be. He's speaking Lively.
9. A couple days ago when I was giving Lively a bath, I said, "Let me put bubbles on your foot," and he held his foot out of the water for me! He knows where his foot is! He knows what his foot is!
10. He let me give him a haircut. Sort of. This involved me sneaking up on him while he was playing in the sink and getting approximately 3 snips, following him around the house for about an hour (4 more snips), and then Pete came home and held him and distracted him so I could complete the "cut."
11. He's been singing! Well, humming. While I was driving him home from Early On, I heard humming coming from the back seat. I hummed with him, 2 or 3 notes at a time, and he imitated the tune.
12. He has been finding my shoes and stepping into them and walking around the house, saying and signing "shoes."
13. Yesterday Lively picked up my water bottle, pretended to drink out of it, and then pretended to feed me with it. This is called associative play, and we haven't seen a lot of it. It's a developmental milestone, so hopefully we'll see more.

It's been a great week.

Be vewy vewy quiet, I'm hunting wabbits.

We moved into our new house last month, and a family of bunnies moved in under our deck. They're very cute. There are little baby bunnies everywhere. And Annie loves them. She sees them and gets very excited, and wants to hold them so badly that she gets a little upset when they hop away.

Tonight Annie and her friend Alicia were playing in our back yard, and Annie decided they should go find the bunnies. The girls (4 years old and almost 4) had been running wildly around the yard, and so I suggested that they move quietly so that they might not startle and scare away any nearby bunnies. Annie went around to all of the adults with her finger to her lips, "Shhhhh. We'w going to look fow bunnies." Lively wanted to play with the girls so much, and was following them around, and after Annie starting shushing all of us, he turned to me with a big smile on his face, and put his index finger next to his mouth. "Shhhhh."

Here's a picture of Pete and Lively from this weekend. I like dressing them alike!

Socks

This story is per Pete's account:

This morning, Pete went to get Lively out of bed, and as soon as he lifted Lively out of his crib, Lively looked over to his dresser, pointed, and said, "Ssssaah." Pete put Lively down on the floor, and Lively walked over to the dresser, picked up the socks on top, then walked back to Pete, handed him the socks, and sat in Pete's lap. He then signed socks, as he said "Ssssah." Pete held the sock open, and Lively happily put his foot into it, signing "socks" over and over.

We've practiced the sign for socks before, awhile ago, but not lately, and I haven't ever seen Lively do the sign before today, especially unprompted.

When it was time for nap, I attempted to remove Lively's socks (it was 90 degrees outside, and not a lot cooler in his bedroom), and Lively expressed his dissent, and repeated the socks sign. I left them on. And gave him about a million kisses.

Today's other fun tidbit:

We sang, "If you're happy and you know it" with Lively today out on our porch, and Lively danced around delightedly for the whole song. He has learned to clap his hands, stomp his feet, or say "hurray!" (he just lifts his arms over his head with a happy smile) at the appropriate time in the song, instead of throughout the whole song. (If you're happy and you know it stomp your feet. *STOMP *STOMP.)

We were all happy. And we knew it.

23 1/2 months, some of today's accomplishments

My brother (aka Uncle Robbob) and his girlfriend Taylor are visiting for a long weekend. Taylor hasn't seen Lively in over a year, so he doesn't know her, but he has really warmed up to her quickly. He approached her several times today (the first day of their visit) and gave her hugs, and tried to climb up on the couch with her. He won't let her hold him - he really only lets Pete, our babysitter, and me hold him - but I've encouraged Taylor to keep trying, so maybe by the end of the visit he will tolerate it more.

My brother has a beautiful dog, Bo, who came along for the visit. Annie and Lively haven't spent much time around dogs, but they are crazy for Bo. Lively walked up to Bo several times this evening and touched him quickly, with one finger, and then ran away squealing delightedly and very proud of himself. Notice, I said one finger. We've been working hard to get Lively to gesture toward anything, and pointing with one finger is a new and advanced skill for him. I've been working on pointing with him multiple, multiple times a day. I make his finger point while holding back his others when I known he wants something, when we're reading a book, whenever I'm trying to show him something, and he seems to be starting to get it.

And, Lively also said "Bo." I'm trying not to be offended that he still doesn't really say "Mama" (just kidding, I'm thrilled for every new word.) There's something about the way he vocalizes that is seeming stranger to me. He seems to know that he sees Bo, he likes Bo, he wants to pet Bo, and that Bo is an all-around good idea, and he seems to understand that Bo is Bo's name. But Lively has a hard time getting it out. He tries to say Bo, but it just doesn't always come. Another example: he's obsessed with ceiling fans (not in an autistic repetitive motion spinny way, ok, well maybe just like that), and he often wants me to walk into a room and turn on the fan. So I've been working to teach him to go into the room, point to the fan and sort of trace the movement of the fan in the air (we're making up our own signs now), and say "fan". Instead, he says "ffffffff..." He just can't get the word out. He knows the word and what he wants to say, but he's not able to make his mouth say that word.

Just some of today's observations. Hopefully I'll have more (positive ones) to share tomorrow.

23 1/2 months

Today Lively played happily with his Aunt Penny for around 30 minutes. This is a big deal because when he's outside of his comfort zone, Lively oftentimes just sort of melts down and refuses to function. Penny lives in Oklahoma, so the kids only get to see her 3 or 4 times a year, but Lively had tons of fun playing with his connecting beads, and was even able to push 2 of them together, which is something I'm not sure he's done before. He still has a lot of fine motor delays and left-sided weakness because of his stroke, and he struggles to manipulate small objects. But today he connected 2 beads. Go Lively!

Lively also enjoyed playing his xylophone with Penny, and even signed "music" to all of us on his way to bed.

Right now, Lively does these signs pretty consistently:

• all done
• cup
• shoes
• night night
• love
• eat
• up
• down
• bye bye

And that's about all we have for words. I guess it's a start.

The First 100 Days of Autism

It’s not that I haven’t wanted to write here, it’s just that I let too many days go by, and there’s too much to say. Sitting down and tackling it all is a bigger challenge each day, and each day I feel a little less up to it. But here’s a start.

When a kid is diagnosed with autism, the parents are usually given a book called The First 100 Days Kit, put together by an organization called Autism Speaks.

Lively was diagnosed around 80 days ago, if my calculations are correct, and I haven’t cracked the book yet. OK, I cracked it, skimmed it, and put it away.

Perhaps the kit would be better named the Second 100 Days of Autism, especially if many parents respond the way to this diagnosis that I have – with denial. I will, I’m sure, spend at least the rest of the first 100 days trying to convince myself that Lively is not, in fact, autistic.

These are the reasons to which I am clinging today:

1. He had a stroke, so his developmental delays are due to that, not autism.
2. Lively spent 3 months on a drug that halted his development. Then he got sick, maybe because of the drug, and spent another several months in the hospital, including intubated for weeks In the ICU. So development was halted by non-autism medical issues.
3. He’s probably not talking because his stroke affected his speech centers in his brain, not because of autism.
4. He makes great eye contact and is very engaged, so not autistic.
5. He’s making developmental progress.
6. He gives hugs and kisses.
7. After everything that has happened, surely to God this can’t happen too.
   

Lively’s Early Intervention providers, however, are not on the same page.

Lively gets services through the Ann Arbor Public School system through Early On, at the Ann Arbor Preschool. There, they have 5 (!) preschool classes for autistic kids. These are just for 3 and 4 year olds living in Ann Arbor who have already been diagnosed with autism. 5 classes. Lively’s occupational therapist told me that in rare circumstances, if a kid is really in need of intensive intervention, he can start in one of these preschool classes at age 2 ½ instead of waiting until age 3. It took me a few weeks to realize that she was talking about Lively. In need of intensive intervention. Don’t wait until age 3. Start now.

Lively turns 2 in 2 weeks. So he will probably start at the preschool in January, 5 hours a day, 5 days a week. The first class is a “level 1”, where the kids have to be 1 on 1 with their teachers because they’re not able to communicate enough or work well enough with other kids to be in a group setting. There are level 2 and 3 classes, where kids are able to function progressively better in classroom settings, and hopefully Lively’s functioning will improve enough that he’s able to move through the levels.

It was a shock to me to realize that Lively would even qualify for this kind of intervention. I’m barely able to admit that Lively might have autism, much less that he is severely impaired and low-functioning enough to be put on the fast track for these special services.

I can’t even begin to start to explain how all of this has changed my life. I worry about Lively every waking hour of every day. I worry so much, that I think it’s making me sick – I have had this silly cold that has hung on for weeks and has now progressed to bronchitis requiring oral and inhaled steroids and breathing treatments every 4 hours. I’ve never wheezed once in my life, and now (literally, right now) I’m breathing nebulized albuterol. It’s not actually unusual for me to be a stress case – I mean, most people who are dumb enough to think that going to medical school is a good idea have enough type A in them that they have their share of migraines, but really, my lungs have stopped working. I’ve never really believed that stress could affect me this way, and I’ve never put much stock in naturopathic medicine (Why do they call it alternative medicine? Because if anyone could prove that it worked, they’d call it medicine!) but I feel the need to take some vitamins and perhaps find a meditation retreat in the mountains somewhere. Trust me, I’m crazy enough right now without adding 60 mg of prednisone each day into the mix.

Goal number next, in an effort to be positive, is to try to enter Lively's accomplishment of the day as a blog entry, on a semi-daily basis. My idea is that if I do this, I can look back and really see his progress, and progress always makes me feel a bit more hopeful. Yes, I'm the same person who vowed to blog weekly and then took 3 months off. But it's good to have goals, right?

10 Reasons That Autism Sucks

1. Second-guessing. A few weeks ago, Lively learned an adorable new trick from his big sister. When we sing "Ring around the Rosie" a HUGE smile comes over his face, and he slowly walks in a circle, to the beat of the song, and at the part that goes, "We all fall down!" he falls down. He even says, "Dun!" I was thrilled to see this because I don't always know that he understands much of what I'm saying to him. Now at least I know that he anticipates the words to the song and maybe even has a clue as to what "down" means.

Now that he has the autism diagnosis though, I second-guess everything he does. Is he spinning because he's playing a fun game, or because he has autism and spinning is a repetitive stimmy thing? His therapists tell us we should try to stop him when he's doing a repetitive behavior and redirect him to something else, but I don't know what this behavior is! All little kids spin around, right? So is Lively's spinning a normal little kid thing, or an autistic thing?

2. Is autism the wrong diagnosis? In my last post I talked about Lively freaking out in the grocery store recently, crying, overwhelmed, terrified. And during that episode, all I could think was, this is it. My baby has autism. But all kids freak out in grocery stores once in awhile, right? So was it just a bad day, or was is autism?

A few days later, Pete and I took Annie and Lively to the mall. Our house is for sale, so when there is a showing, we have to leave for an hour or two. For this trip, Lively looked like this:

And the mall was crazy! It was full of large groups of roaming teenagers, one store blasted music so loud that I could feel the floor outside vibrating, Annie ran around screaming her head off, weird lights made pictures on the floor, the Easter Bunny was there, and Lively was FINE. He chased his sister around, laughing delightedly. He got frustrated when I tried to make him try on new shoes in a nice quiet little store, and happily ran out into the chaos. And Pete and I thought, he isn't autistic.

The next day, we took Lively to Lowe's, and he looked like this:



I can almost convince myself that there isn't a problem here.

3. Is autism the right diagnosis? Lively has had a gastrointestinal bug the last few days and hasn't been able to hold down any food. He has a runny nose too, and seems not to feel well. Last night we walked over to our new house, and instead of happily frolicking in the back yard (which is a beautiful fenced-in yard, and I have been dreaming about seeing my kids chasing one another in it), he cried so hard when I picked him up that I eventually set him down in the grass and let him rock and do this finger-flicking thing he's just started to do. My heart broke into a thousand pieces.

4. I feel enormous self-imposed pressure to quit my job and devote myself full-time to doing therapeutic activities with Lively to help his development.

5. The problem with number 4? Therapy is incredibly expensive. My 21-month-old has around 10 words that he uses so irregularly that I'm not sure we should really even say he has 10 words.  He needs speech therapy. But the fine print in our health insurance policy reads that although we are entitled to 60 visits of PT, OT, and speech per year, if Lively is eligible for free services, such as those in the public school system, insurance may decline to pay for additional services. Lively gets about 25 minutes of speech a week through Early On, but I haven't been impressed at all that it has made any difference for him. He needs more. A speech therapist who recently evaluated him recommended at least 2 hours of additional speech per week, and this, if we need to pay out-of-pocket, will cost around $1200 a month. And that's just speech. What if I want to take him to music therapy (which has been shown to be helpful with some autistic children)? Another $100 a month. The local pediatrician who specializes in autism and comes highly recommended, but doesn't take insurance? $300-$500 a month. The herbal supplements and millions of other products the internet recommends? $300 a month at least. So actually, instead of cutting back, perhaps I should pick up a second job.

6. When I do come home from work, I'm so exhausted both from work-related pressures as well as the underlying stress that comes from worrying about Lively 24/7, that my fuse is short and I'm not the positive, patient, therapeutic-play providing parent that I want to be. It takes all of our energy to get dinner on the table, to bathe a kid or two, give Lively his medicines and set up his tube feeds, read him a story, watch a Phineas and Ferb with Annie, read her a story, and get them both in bed. And then it's 9 o'clock. Which is when Pete and I crawl into bed and both fall asleep in the middle of a conversation about how I'm so worried about Lively.

Despite my neglect, the movie star seems to be taking things in stride.

7. The internet. I frequently tell my patients not to believe everything they read online. But there is so much conflicting information out there, I just don't know what to do. Do I experiment with a gluten free casein free diet? Am I the worst mother in the world if I don't try this? Do I vaccinate him when it comes time for his next round of shots? I have always believed whole-heartedly in vaccinations, and if I decided not to continue to vaccinate him, I think I might worry just as much about his risk of measles or rubella. Do I try the million-dollar vitamin supplements? Or the transdermal glutathione cream? I am actually thinking of a trial of the GFCG diet, although I'm not sure how to start because Lively requires about 750 ml of formula in his tube feeds every night, and finding a replacement for that seems almost impossible.

So far when it has come to Lively's health, we have had tons of questions his doctors can't answer. Pete and I have tried various methods to get him to take food by mouth based on things I've read in mom-blogs. And some of them have worked. But seriously, my son won't even eat non-pureed food, so how in the hell am I going to get 1400 calories a day in him if I can't even use his formula to make up the difference anymore?

8. Did I mention, um, the guilt?

9. The unknown. Lively is interactive, loving, happy, cuddly, and engaged. Will he continue to be this way, or will I wake up one morning and no longer see my sweet baby's personality in his eyes? Will he be able to have a job one day, or do we need to start thinking about providing for him forever? Should I hope for better treatments and therapies, or just accept that he will always struggle with this diagnosis?

10. I am neglecting the rest of my family. And myself. I need to go to the dentist. I need a haircut. I need to exercise. I need to cook a healthy meal for my family. I need to have a conversation with my husband about his day without being interrupted by kids or being too tired to listen. I need to be able to focus on Annie. I need to be able to provide a more therapeutic environment for Lively. I need a vacation (and for everything to be perfect when I get back).

Fortunately, for now, despite the suckiness of autism, I still come home to this guy every day. Seeing him and Annie and Pete when I walk in the door is the best moment of my day. You can probably understand why.





Autism Awareness Month

As my recent posts suggest, I have been more acutely aware of autism in the last few months than I ever have been before. It's a much-feared diagnosis for all parents, I suspect. Since the first instant that it was suggested to me that Lively may have some autistic features, I have been trying to find a way to prove that it's not true, that the developmental delays he has, the flapping, wheel-spinning, hand-twisting, and head-shaking can be explained by his stroke, his history of infantile spasms, anything else. Each time he looks me in the eye, checks in visually with me while playing, happily approaches another person, or waves bye-bye, I put a mental check mark in the "not autism" column in my mind. 

For the last 2 days, Pete and I have participated in a study at U of M: the First Words Project. Yesterday we had a 4 hour interview with a very nice psychologist specializing in autism diagnosis, and today Lively underwent 3 hours of testing, including the ADOS (Autism Diagnosis Observation Schedule) and a different test that assesses his cognitive development. Last month the developmental pediatrics specialist we saw diagnosed Lively with Pervasive Developmental Disorder, Not Otherwise Specified. Today Lively was diagnosed with autism.

I was expecting the spectrum diagnosis (PDD), but I was still hoping not to get the autism label. Lots of people don't know what PDD is. It sounds benign, or like a catch-all (we don't really know what's wrong with you, so we'll call you PDD!) It leaves hope that my son may one day not meet criteria for an ASD. Autism comes with preconceived notions. It's a label no one wants, that most people pray to avoid at all costs.

Yesterday I got a big dose of mothering an autistic child. I took Lively for a quick trip to the grocery store with me, which is something we've done quite a few times, although not as much as I had with Annie at his age because we've struggled with physical illness with Lively so many times. He was fine at first, smiling at me, seeming fairly interested in the process. After a few minutes he started to squirm. And fuss. And cry. And yell. And scream. I couldn't console him. I walked to the checkout line, with the most miserable little boy in the world in my grocery cart. I couldn't take him out (I had already tried, which resulted in a back-arching that almost launched him out of my arms, followed by bonelessness that almost made me drop him) so I wrapped my arms around him and tried, with only minimal success, to soothe him. The cashier took my credit card and ran it through the do-it-yourself credit card machine and then signed for me. Two people came over to help bag the groceries, and threw them into 2 carts. Someone walked out with us and unloaded the groceries into my car. They could not have gotten us out any faster. And the instant big-boy was in his car seat, he was happy as a lark.

Should we never leave the house again? Right now, that's my plan.

Back to the testing results -- it gets better. We were also told that Lively has severe cognitive delays. So in addition to autism, Lively also has impaired intellectual functioning. These do not go hand-in-hand; many people with autism have very high IQs. According to the psychologist, with intervention, it's possible that Lively might improve his development, including his cognition, and "catch-up." Right now, my almost-21-month-old is functioning at around 13-14 months intellectually. The worry is that he may fall even further behind. (I actually thought we were intervening with the endless appointments and therapies over the last 9 months, but evidently he needs more.) So we're going to intervene more.

Anyway, I am aware of autism now, and in fact, get to join yet another club -- mothers of autistic children. I know that this diagnosis is not a death sentence, and I know that my precious little boy is the same precious little boy that I had yesterday. I just want every opportunity possible for him, and shit, we barely stop reeling from the last diagnosis, and then we're hit with another. And I'm so freaking tired of it.

Developmental testing, take 2

The following is the exam, assessment, and plan from Lively's testing a week and a half ago. It took me about a week to bring myself to read it, and I've been thinking about it constantly since. My annotations are in bold.

Lively presents for a neurodevelopmental assessment:

Physical Examination:

GEN: He was awake, alert. He was somewhat difficult to engage. He demonstrated some spontaneously produced speech, reasonable eye contact but notably better with parents. He was somewhat uncooperative with developmental testing. Lively was obviously uncomfortable during the testing, which occurred in a small, windowless, disorganized room with Lively, Pete and me, the attending physician, a resident, and a medical student. Lively was asked to perform in front of 3 people he doesn't know, at very close quarters. The doctor insisted on having him sit in a wooden chair at a table. Lively doesn't sit in chairs other than his high chair, which is comfy, and has a back, arms, and straps to hold him in securely. Pete and I suggested that she test him on the floor, where he would be more in his element, and after he basically refused to do anything for 15 minutes, she consented to Lively sitting in his stroller for testing (also comfy, with back, sides, straps). Yes, he was uncooperative. I felt fairly uncooperative myself.

NEUROBEHAVIORAL STATUS EXAM: This neurobehavioral status exam includes clinical observations and assessment of motor function, thinking, reasoning, and judgment including knowledge, attention, language, memory, problem solving, and visual spatial abilities. Observations as follows:
Activity level: Normal activity

Attention Span: Variable but maintained limited attention with developmental testing.

Gross Motor: Able to walk without assistance with toddler wide-based gait; able to walk up stairs with one-hand assistance; crawls up stairs on own

Fine Motor: Has pincer grasp with cereal; fisted pencil grasp with spontaneous writing. Lively, for the first and only time, picked up a Cheerio with his thumb and pointer fingers, which is the pincer grasp. I have not seen him do it before or since. He'll get there, but now, he rakes the cereal into his hand palms it, struggles to get it to his mouth, and drops it half the time. However, because he did this once, his fine motor skills were judged to be "his best," at 17 months developmentally. This is not the case. And this result is one of many indications, to me, that this particular testing is a load of crap.

Speech and Language: + vowel and consonant sounds, "dada," and other babbling

Mood/Affect: Engaged at times, other times fussy.

Play: Repetitive movements with the following -- moving blocks back and forth, spinning board in circles, flipping puzzle pieces in fingers, banging toys, tapping on the table and wall. Does show symbolic play with hair brush (tried to brush his own hair). Observed his focusing on the lights and finger flicking without purpose. At times, offers toy to share and symbolic play but not consistent behaviors. Subjectively had to work hard to get him to engage with play. These are some of the issues that have had me worried for awhile. Lively has numerous repetitive motions. He used to do a lot of flapping and "stimming", but as he's gotten older, we see this less. He does like to spin toys and to bang on things, but with his motor delays, it has been all he can really do. He will, for example, spin a part of a toy, and seem to focus intently on it, but if I call his name or show him something else, he changes focus easily. He does lots of finger flicking, but only with his left hand, which is the side affected by his stroke. He's always postured with that hand, he's definitely weaker on the left, and we've always thought that it probably feels different to him. As he gains motor abilities, some of his disorganized and repetitive behaviors are shifting. For example, he used to sort of bang around a bucket full of blocks, but now he's able to dump out the blocks and put them back in, so he doesn't really bang them anymore. As far as symbolic play, the doctor gave him a doll and a bottle and wanted him to "feed the baby". Lively has a g-tube, and isn't able to take liquids by mouth at all. He hasn't had a bottle since he was 9 months old, and I know there's no way he would remember what to do with one. If she'd given him a freaking toy phone, he would have held it up to his ear and said, "Dada?"

Cognition: Appeared to be delayed based on his verbal capacities. Object permanence -- able to find ring; able to find car with multiple attempts. This means that he was able to find a toy that was hidden under a blanket. It's a developmental milestone when a child knows that a toy still exists even though he can't see it (object permanence).

Relatedness: Demonstrates some eye contact but notably better with parents. He does check in with parents intermittently. Parents report he is referencing his parents more at home. Referencing is when a child is playing, and he stops and checks in visually with the caretaker, like, look at me! Did you see that?! For a long time Lively didn't do this, but we're definitely seeing it more and more. The other day, he pulled Annie's hair, and got "in trouble" for it (which means we said no, sternly, and picked him up and sat him down in the corner). This is actually mostly for Annie's benefit, to try to show her that it's not OK to hurt people, and to show her that we will not let Lively get away with hurting her. When he came out of time out, he went right back to Annie, reached for her hair, stopped, turned around and looked at Pete, and smiled with an expression that said "Look what I almost did! Ha!" Or other times, he will roll a ball back and forth with Pete, and he'll look at me proudly, as if to say "Did you see that Mom?"

DEVELOPMENTAL ASSESSMENT: Lively was assessed with a Mullen Scales of Early Learning. The Mullen Scales of Early Learning consist of a gross motor skill together with four cognitive skills: Visual reception, fine motor, receptive language, and expressive language. The gross motor skill measures central motor control and ability in supine, prone, sitting, and fully upright positions. The visual perception skill test of the child performance and processing individual patterns, and the primary ability areas covered in the scale are visual discrimination and visual memory. These abilities involve visual orientation, visual sequencing, and visual spatial awareness. The fine motor skill provides a measure of visual motor ability. It reflects the output side of visual organization. These items require visually directed planning. Primary ability areas covered in this scale are unilateral and bilateral manipulation and writing many enough. The receptive language scale measures the child's ability to process linguistic input. The primary ability areas covered in this scale are auditory comprehension and auditory memory. The expressive language scale measures child's ability to use language productively. The primary ability areas covered in this scale are speaking ability and language formation including ability to verbalize concepts.

Lively's scores were as follows:

Gross Motor age equivalent, 16 months; agreed
Visual reception, age equivalent, 14 months; no clue
Fine motor, age equivalent, 17 months; I'd say more like 14-15 months
Receptive language, age equivalent, 11 months; I think closer to 14 months
Expressive language, age equivalent, 10 months; maybe

Lively's age is 19 months. At the time of this test, he was 4 days short of 20 months.

In the domain of gross motor development, Lively could stand and walk up stairs with help.

In the domain of visual reception, Lively could turn cup right-side up, makes object association with brush, looks for car under two washcloths, and shows interest in book as hinge.

In the domain of fine motor development, Lively could bang in midline, take 4 blocks out and put block in, uses two hands together, show refined pincer grasp, turns pages one at a time, imitates crayon lines in any direction. He also showed repetitive turning of blocks, turning of puzzle in circles, and turning shape around in hands.

In the domain of receptive language, Lively could understand simple verbal input (bye-bye) and identifies objects.

In the domain of expressive language, Lively was able to show voluntary babbling, produce three consonant sounds, vocalize two-syllable sound (dada), plays gesture game (peek-a-boo), combines jargon, and said "cu" to approximate for cup.

Impression: Lively is a sweet and adorable 19-month-old little male who presents to the Developmental Clinic with concerns about speech, language, and behavioral development. I couldn't agree more with the sweet and adorable part.

On developmental assessment, Lively demonstrates some receptive and expressive language delays with additional notable deficits in the pragmatics of social communication, which includes deficits in how he uses eye contact to initiate and maintain social interactions with others. He demonstrated notable delays in his expressive language (expressive language skills at 10 months).

In addition, he demonstrated some atypical restrictive patterns of play: moving blocks back and forth, spinning the puzzle base, rolling puzzle piece around in fingers, finger flicking, and banging hands against table and wall. He demonstrated intermittent eye contact and inconsistent social referencing. There was little shared back-and-forth reciprocity with him. I forgot to mention -- she tried to have him do a puzzle. He absolutely doesn't have the fine motor skills yet to do a puzzle. The eye contact is actually much better than what she saw. I think he was just as pissed as I was.

These constellations of symptoms characterized by limited bidirectional social interaction (characterized by poor eye contact and limited use of nonverbal gestures and limited initiation of back-and-forth interactions), and restrictive range of interests suggest a diagnosis of pervasive developmental disorder, not otherwise specified (PDD-NOS). Lively demonstrates some notable strengths, including improved eye contact with parents and an ability to engage in some limited reciprocal activities with his caregivers. Lively is a sweet and responsive little boy who, with scaffolding and redirection, is able to engage in some bidirectional activities. He is verbal and demonstrates limited intentional spontaneously produced speech sounds. It is encouraging that he is demonstrating progress in two weeks since his last visit. He would benefit from early intervention. Perhaps, most importantly, he has loving, invested, caring, and committed parents who are very dedicated to him and who are very vigilant in helping Lively reach his developmental potential. We are happy to support them in that regard.

Our diagnoses are as follows:
1. Pervasive developmental disorder
2. Lack of expected development
3. Global developmental delay.

Medical decision making included the following.
1. Obtaining history from the parents.
2. Review and summary of previous records and evaluation.
3. Findings discussed with Dr. Joshi

Recommendations: Our recommendations are as follows: another interjection here. The doctor spent quite a bit of time with us discussing her recommendations. However, there's a lot here that she didn't mention to us. We don't have a return visit scheduled with her either to discuss further recommendations.

1. Because of Lively's atypical developmental picture, we are recommending a referral to Genetics to rule out a genetic contribution to his atypical developmental picture. She did not tell us this. We told her that Lively has already seen genetics, and the geneticists don't think he needs further evaluation from them. Lively has had some targeted testing, and everything was negative. For now, I'm satisfied that there is not an underlying genetic condition. Lively had a stroke, likely perinatal, which caused infantile spasms and a seizure disorder. He has experienced many complications of medical intervention that kept him either feeling terrible for 3 months due to medication side effects, or that landed him in the ICU on a ventilator (twice) with long term hospitalizations totaling 2 months. So perhaps it's expected for him to have a 5 or 6 month delay.

2. Because Lively has several developmental and learning needs, we are recommending an assessment through UMACC and parents have set up an appointment for early April. Long term needs will likely include the following developmental assessments:

-IQ and achievement testing.
-Speech and language assessment to look at receptive and expressive language and the pragmatics of social communication.
-Occupational therapy assessment to look at fine motor skills.
-Behavioral assessment with some measure of adaptive functioning such as using the Vineland Adaptive Behavior Scales.
-Play assessment and observation of interactions with other children.

3. If Lively does not meet criteria for inclusion in the ESI Program, we would recommend increasing developmental services to include speech therapy twice a week to address receptive and expressive language skills and the social pragmatics. We have been referred for speech therapy twice a week, and our intake is scheduled.

We recommend that Lively receive intense speech therapy to focus on the pragmatics of social communication. We feel that Lively's language needs are best provided by intensive speech therapy at the frequency of 2 times per week. We have given the family a prescription for private speech therapy services for 2 times per week.

Speech therapy can address, for example, having him make requests that involve both the use of eye contact and a combination of vocalizations, and/or gestures and signs. We also discussed encouraging all methods of communication.

4. We feel that Lively should continue occupational therapy to address his sensory symptoms and his fine motor delay through Early On and Milestones.

5. Lively could benefit from the addition of behavioral interventions to assist him with his capacity to engage in bidirectional social communication. I have no idea what this means, or where we get "behavioral interventions".

6. Lively should be enrolled in a full time program which addresses his neurological and developmental needs, and provides intensive services in a setting with a small student-teacher ratio. Lively is at risk for developmental regression if developmental services are not provides in the context of a year-round program. Whaaaaatttt? Um, this is news. Thank goodness I have access to his medical record. What kind of full-time program? Where? How do we get in? How much does it cost? Does insurance pay? This "full-time program" seems like a pretty big thing to forget to mention to the parents. I still don't know what we're going to do about this.

It will also be important that Lively receive services that are specific to children with PDD-NOS. Specifically, researchers recommend that children with PDD-NOS/autism receive 25 hours per week of structured intervention that targets their areas of need. It will be important that therapy focus on building his capacity to engage in reciprocal play with others, building imaginative play skills, as well as minimizing repetitive behaviors and play.

It will be important that Lively's teachers, therapists, parents, and medical professionals, maintain close contact with one another to insure his progress. It will be particularly important that he receive follow-up evaluations of his verbal reasoning skills (and eventually his skills in reading comprehension and written expression) since he is likely to require assistance in these areas.

So, here's my plan:

1. We have intake scheduled through the University of Michigan Autism and Communication Center. However, I'm a little worried about their ability to provide appropriate care to Lively based on an inside scoop. We're going to complete the intake and see how we feel.

2. We have appointments to see almost all of Lively's providers in the next few weeks, and I'm asking all of them about U of M's program, and if they have any other or better recommendations. If my blog-reading friends have information on local resources, I'd really appreciate hearing about them.

3. There is a private doctor in Ann Arbor who seems to be doing important and successful work with young autistic children. He is extremely expensive, and insurance does not cover his services at all. I have a bit of an issue with this. The cost for this care is high enough that Pete and I would have to do some serious belt-tightening to afford it, but if we never go out, ever, and start clipping coupons, we could make it work. And I'm a doctor folks. I work for a university, so although I don't get paid anything like what I would in private practice, I know Pete and I make more money than most families in this country, and it would be a struggle for us to pay for this care. And I just don't think it's right. Why should only the autistic kids that come from well-off families get help? Still, like most parents, I would do anything for my son's health and happiness. Perhaps I'll find out that this doctor donates free or reduced-cost care to families that can't afford to pay him, but if this is the case, it's not indicated on his website. I'd say, however, that there's a pretty good chance that I'm going to take Lively to see him for an initial assessment.

4. We're going to get lots of speech therapy.

5. We're probably going to add some more occupational therapy.

6. I'm going to try, very hard, not to lose my mind.