jump to navigation

excuse me. i have a grievance. September 30, 2010

Posted by caizooka in autism, autism parenting.
Tags: ,
2 comments

In the back of mind this past year, I’ve been drafting this letter. I’m sending it off today. I have removed all doctor’s information and names.

——————-

Dear (said doctor’s clinic):

I am writing to you because I don’t want to see another family have to endure the pain, uncertainty, and unnecessary distress that my family has. I would like to take this opportunity to express my dissatisfaction with our care at Your Clinic. I would most like to see fundamental care changes made to be able to identify Autism Spectrum Disorders and other developmental delays identified in a more timely, compassionate, and diligent manner.

My oldest son who is 13, as well as my youngest son, who is 2, both are neuro-typically developing children and we encountered no problems with Your Clinic. I was satisfied with the care and numerous times came to the defense of our doctor, Dr. ABCD . In my mom group and in the community, there were several nay-sayers of whom I quickly dismissed and told them of our extreme dedication to Dr. ABCD and the other doctors at Your Clinic. Especially Dr. EFGH and Dr. IJKL.

Where I take up issue is in regards to my son, O, who is 5. He has had numerous health issues. He had respiratory issues from the time of just a few weeks old, asthma, repeated colds and ear infections, and many clear signs of developmental delays. We were constantly seeking answers for the variety of health problems that we were encountering. There was never a clear asthma plan laid out for us. We met once with a different doctor at Your Clinic who asked where his asthma plan was.  I had never heard of an asthma plan and this was months after being treated for and medicated for the condition.  After this and also after being put on a barrage of medications for asthma, we finally were able to obtain the referral to Local Asthma Clinic where our needs were better met for his asthma.

Early on in O’s care at your clinic, we expressed our concerns of his atypical behaviors. These are the ones that I think could have been better evaluated and picked up by our doctor earlier on his care:

-little or no eye contact

-extreme fear of water

-screamed in small places (claustrophobic-like)

-irrational behavior around noise
-panic in group settings

-strange speaking behaviors
-spacing out, glazed look in his eyes
-seemed not to hear sometimes

-showed little or no interest in other children

-covering his ears a lot

After a suspected bout of encephalitis at age 2, these behaviors were even more apparent, as well as these:

-loss of language

-irrational reaction to pain

-OCD (very obviously lining things up)

-a lot more spacing out

-inability to answer a direct question

-violent, intense tantrums

-pattern walking

-abnormal pickiness in eating

-complained that his ears hurt when they don’t

There are a few other times that I think that O’s health care could have been better handled.

-The entire encephalitis incident. Dr. ABCD didn’t have enough information to go from and called in Dr. EFGH to concur that it was probably not Kawasaki Disease, because of the absence of mouth lesions, but rather, it was most likely encephalitis. They sent us to Local Hospital to undergo further testing. Up until this point, I think that things were handled okay. However, never were either of these two scenarios explained to me and I left the clinic with my screaming child, and myself in tears and headed to Local Hospital’s ER where they were awaiting our arrival. I was trying to search desperately from the parking lot on my iPhone what Kawasaki Disease meant. What was encephalitis? How did he get either of those? What did that mean? Why was my son so sick? Why was he screaming non-stop and could not calm down. Was my son going to die? After enduring a battery of tests at the ER, they found nothing but ruled out several sicknesses including diabetes. O only calmed down once we found his favorite movie to put in the VCR in our room. Dr. ABCD decided that based upon the findings (nothing) that it was most likely encephalitis and we should treat him at home with acetaminophen and ibuprofen. We were given no follow up care or instructions of what to look for in terms of him becoming more ill. It is after this incident that O lost a significant amount of speech and began spacing out a lot. He went from speaking in paragraphs to screaming one word demands.

-The incident that finally caused us to leave Your Clinic occurred in 5/09. O woke up screaming and would not stop. Finally, at 9, I called Your Clinic and explained my concern that my son was screaming and was in apparent pain and that I needed advice as to what to do. At that point he had been screaming and crying for 2 hours, unable to calm down on his own or by diverting his attention to something else. I consider myself to be a very resourceful mom. I tried everything. Change of venue, distraction, ride in the stroller. The nurse said that she would consult with the doctor and call me back. She called back at 11 asking a few questions but offering no advice. By that time the behavior was escalating further and was unable to calm down; it had been 4 hours. I told her that I thought that he needed to be seen and I didn’t know what to do. She said that she would have Dr. ABCD call me right back. I was very clear in describing to her the urgency of the situation. My husband had to come home from work because I still couldn’t get O to settle down and the screaming and tantrum was spiraling. I was so worried that there was something medically wrong that was causing this behavior. Did he have a headache? There was definitely some sort of inexplicable pain. At 1:30, I decided to take him on a drive in the car. He managed to get out of his 5 point harness car seat and was trying to jump out of the car. At that point, I took him to the ER because he was then a danger to himself. They didn’t find anything medically wrong with him but we spent several hours there trying to get him calmed down enough to run tests. When we finally got home at 7pm from the ER, there was a message from Dr. ABCD’s nurse at 2:30 stating that if the behavior was bad that we should probably go to the ER. Too little, too late. No follow up calls or care was provided by Your Clinic. After this incident, I requested a neurological-psych exam referral to Local Hospital. There was something not right about O and I was determined to find out what it was. I was not going to feel bad for hurting my doctor’s feelings by requesting this. He referred us. When we met with the neurologist at Local Hospital, she told us that our doctor had specifically written, ‘parent requested referral’. That spoke volumes to the fact that our doctor didn’t hear what our concerns were and support us in finding out what was going on. Considering that he had had suspected encephalitis, which was followed by severe loss of language and constant spacing out, I would assume that a doctor looking out for the best needs of their patient would want to rule out any neurological impairments. Seizure disorder? Autism? Other Processing disorders? Brain tumors?

Reflecting upon Oliver’s care at Your Clinic, I recall vividly telling our doctors every appointment that there was something ‘different’ about O. I always remarked that he screamed when in a crowded room and wondered if perhaps he had some sort of processing disorder. We were always searching for answers for what we were dealing with and always left Your Clinic still wondering. Looking back, this is not how it should have been. I should have been more persistent but felt so lost.

It has taken me a great deal of time to think and process this situation before I could sit down and write this letter. I have thought long and hard about what I wanted as an outcome of this letter. For one, I believe that your doctors need to have more time with each patient.  5-7 minutes with each patient might be enough time to diagnose an ear infection or simple cold. It is not nearly enough time to be able to decipher if there are developmental delays. If they suspect there might be, then perhaps there could be a point doctor in your practice who might help guide the other doctors in fielding questions and furthering referrals to obtain earlier diagnoses. Your doctors need to be better informed on what to look for in order to detect developmental delays. With Autism Spectrum Disorders on the rise, you are doing a disservice to your community by not better educating your staff on what to look for, when, and how. There should be better protocols for when a parent or doctor is suspicious of a behavior or there is a sign that perhaps is not developmentally normal. I recall asking Dr. ABCD repeatedly if he thought that O might have any processing issues. He told me that he did the appropriate AAP screening and that he was fine. He never had the time to listen to our concerns about O’s development beyond his immediate physical concerns.

Feeling like your doctor or medical practice is not listening to your words is a very frustrating place to be in as a parent. When I put my children’s healthcare in your hands, I expect that I am listened to and respected. I expect that as a parent that I should give our doctor as much information as possible that might be pertinent to the situation. When a child is suffering from neuro-developmental delays and possibly autism, please understand that it is a spectrum disorder. Some children present in very different ways than others. Be observant. Be patient. Listen.

I feel strongly that O’s diagnosis probably couldn’t have been obtained much earlier than it was, but he most definitely could have benefitted from early interventions and guidance. I cringe when I think about the time we lost and will never get back when we could have been getting him help. It was a very painful time for us as a family not knowing what was going on. We really could have been helped with the guidance of a strong medical practice and empathetic leadership to guide us into this diagnosis of ASD rather than grasping at straws and begging for referrals.

It is my sincere hope that our story moves your clinic to take into consideration changing your protocols involving understanding, identifying, and diagnosing Autism Spectrum Disorders. Ultimately, it would be ideal if you could set up a protocol in which if a child’s primary doctor identified something in a better screening technique than you are currently employing, that they could refer them to a lead/point doctor within your practice to spend more time with the child to further investigate if there might be any developmental delays. Obtaining a diagnosis for any development delays is a significant wait. The doctors of your clinic should be able to at least treat the symptoms that the child is contending with. Are there sensory processing disorders that could be helped with PT/OT? Are there other issues at hand that could be better dealt with ABA/DIR therapies to help the child? What can you as a medical practice do to better accommodate this child and their family? Do not waste time. Early diagnosis is important, but early therapy, guidance, and compassion from your doctor is crucial. There is so much that you can do as a medical practice to lead families gently into this diagnosis. You have such power to make this a less difficult path than the one that we took. I hope that you take the opportunity to consider how to better accommodate your patients and their families.

I am happy to meet with you to at any time to further discuss this matter and to help to create a better understanding of Autism Spectrum Disorders.

Thank you for listening,

me

what to google? September 28, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
add a comment

So, I’m having a devil of a time with E (2 1/2) who picks up every bad (and good!) thing that O or J says and does. I’ve slacked off a lot more than I would like with O because I try and give him space to get himself out of situations on his own and with assistance and try not to focus on the peripheral. When he loses control, he really doesn’t know what he is doing. In those times, he uses words like, ‘shut up’ ‘stupid’. Great. He normally doesn’t use them in everyday context. Only when he can’t handle himself. Quite frankly, I’m doing what I said that I would never do…different rules for different kids! Yep, I’ve become a massive hypocrite!

E (aka Mr. SmartPants) picks up absolutely everything that O and his 13 year old brother, J say. And, because his wheels are churning at such a rate and in such the right direction for him, he uses everything in perfect context, perfect tone, and looks us right in the eye when uttering these words. Yep, told me, while looking me in the eye and squinted at me with the devil in his eye, ‘shut your face, Mom!’. Seriously, that was such a shocker. The first time. Now it’s become our new normal. Just lowering the bar, day by day, by day.

Oh, yes, we have tried the ignoring phase. Tried the ‘oh, lets use nicer words, pal’ phase. Tried the time out. Been thru my entire, well versed parenting repertoire and have come to the conclusion that I don’t know squat! Oh, I have recently gone hoarse on a day or two because of the ‘shouting’ phase. That, also, didn’t work. DARNIT!!!!! And, I did the lemon squirt bottle in the mouth phase. Of course, that morphed into the ‘shut your face, Mom!’ followed by an immediate ‘can I have lemon juice in my mouth now? It’s spicy, Mom!’ phase. Delightful! Not to mention the looks of people wondering why I am carrying around a lemon juice bottle with me.

I’ve googled and googled. But, what to google?  ‘discipline toddler who will not listen’ ‘how to discipline toddler of autistic older brother’ ‘how to discipline toddler of autistic brother and teenager brother’ ‘how to discipline toddler of 5 year old autistic OCD brother and teenager who thinks it’s hysterical to get a rise out of his parents by making his brothers say inappropriate things’. Okay…tried all of that…and I must say that I must scoff at the suggestions of what to do for our situation. ‘simply tell your child that you don’t like their words’, ‘ignore this behavior, it’ll go away’, etc, etc…

I’m thinking to get the tabasco out. Bad word = a little squirt O’tabasco. Is that really bad?!!! J said one bad word when he was 3. I washed his mouth out with soap. Never again. Situation over. Done. He also responded well to time out and saying, ‘No thank you!’.

I know that E is going to be extremely successful in whatever he decides to do and set his sight on, but he is sure a tough nugget to raise.

Over the weekend we went to Minneapolis to my sister’s wedding. The wedding was lovely. The city and all of the events of the wedding were marvelous. Yet, E elevated to a whole nuther level of cuckoo. I think that we enter situations carefully anticipating how O is going to do. What we can do to help him get through situations. What do we need? What GF foods do we need to prepare? What kind of situation is it? Who is going to be there? Are we going to have the right coverage for 1:1 attention for him. J had an awesome time because his cousins as well as my sister’s husband’s nephews, and their new cousins had a fantastic time together. E is the one that always catches me off guard. He is the one that I guess that I expect will go with the flow as he is boy #3. In my family, girl #3 was the most pleasant and always came along to everyone else’s events gladly and was always so easy to be around and take places. This is not what I expected. Everyone says that their 3rd child is always so chill and go with the flow. Hmmm….not quite seeing that yet. Maybe soon?

Can I just say that The Mall of America is a nutty place. Loved it and hated it all in the same breath of recirculated, temperature controlled air. Just to paint the picture for ya…we walk in and went immediately to the Nickelodeon Universe. Holy cow! In the middle of the mall is the LOUDEST, funnest, LOUDEST, craziest, LOUDEST place on earth. It was insane. The older kids had the most fab time ever. They got unlimited ride wrist bracelets and were gone, gone, gone…not even breaking for lunch. My sister took them smoothies to get them some nutrients, knowing that they weren’t going to sacrifice the time to sit down for a real meal. Good call! I looked at O thinking that he might be about to wig out, but for some odd reason, he was just bee bopping along, skipping to his own tune, enjoying life. E was in the stroller, screaming and yelling that he wanted to get out. Uggg…this mommy’s brain simply could not filter out all of the sounds. The layers of noise were too darned much. Finally, after a couple of hours of walking around the MoA, Peter took E back to the hotel to get him to sleep. Then I could focus on O. We had a great time after that.

apple, oh how I love thee September 16, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
1 comment so far

It’s interesting the press that the iPad and autism has gotten recently. See the article. O loves it. E loves it. J loves it. Our exchange student, Hiroki, loves it. We went to the Hood Canal this past weekend. Car rides have not been our strong suit lately and quite honestly, have prevented us from really doing that much in the way of family outings or vacations. Peter stayed up late the night before heading out and updated our old iPhones with all of the kids apps and a few kids movies. Brilliant! I held out as long as possible, but soon enough the whining got ahold of me, I handed each of them an iPhone. Blissful quiet! Angry Birds, Fruit Ninja, Animals…they love some of these apps!

Wow. How times have changed. How being a parent of a 3rd child (11 1/2 years after the first) really freaks me out about how much I have lowered my standards, or rather, rearranged them. But, I wonder perhaps how unrealistic my initial expectations were. I was younger then. Just 26 years old. So entirely naive. Became a single mom at 28 years old. Life was so different then. My oldest son was so different. I could not have raised either of the little guys in the same situation. Their personalities would not have tolerated it. That was not their place in life. Goes to show how much we have to just trust and have faith that it will just all happen as it’s supposed to. Although I never thought that at the time, I now understand that completely and I love that. Never in a million years would I have allowed my oldest son to play with a video game, a handheld device, anything of that nature. Now my 5 year old and 2 year old play with iPads, iPods, iPhones, iEverything. They watch movies and shows of which I would never have let my oldest watch at their ages. Their world is different. Their places in the family are different. Their point of views and their perspectives will be different from each other. They will each bring something so entirely different to their futures because of their birth order, because of their place in our family, and because of their genuinely unique differences.

It’s fun being one of 3 siblings. All girls. We are all as different as night and day. We all 3 have different yet valued relationships with each other and with our parents. Neither any better than the other, just really different. I love how that we are now all 30-40ish and that we have grown more so into who we are, accepted it, and have embraced what we are, and recognized what we have to offer, our short comings, and mostly our own sense of self-awareness. With self-awareness comes great strength. I think that I walked around more than half of my life completely and totally unself-aware. Glad to meet myself. May have taken 40 years, but I’m catching up! Man, I sure do hope my kids become self-aware much earlier in their lives than I did.

O, the Kindergartener September 8, 2010

Posted by caizooka in autism, autism parenting.
Tags: , ,
4 comments

Oh, our sweet O started Kindergarten this morning. Happy to report that there were more smiles than tears! After getting the oldest and youngest off to school by 8:15, it was time to focus on O. At 9, we were waiting for the bus. Darn. The bus never came! You know how the first day of school is for transportation. I’m sure that it’ll be sorted out soon. But, try telling an autistic child that on the first day of Kindergarten! At first he was completely inflexible and stomping his feet. Then, all of a sudden, he said, ‘Ok, we can go in Mommy’s car today, but tomorrow we are going on the bus, Okay, Dad” Whew. Crisis averted. Mommy, Daddy, and O got in the car, went to the school, got to the classroom. Everything still going smoothly! We found his desk, put his things in his locker. There are 5 kids in his class. Very, very cute kids. The teacher is fabulous and O is very responsive to her voice. I was introducing O to the little boy sitting to his left. O crossed his arms and said, ‘humpf’. Majorly over exaggerated frown. His tone told me that either he was going to hit someone or hug someone. His body language basically put an exclamation point on the situation. I took a visual inventory of the little boy to his left. (you know when you rent a car you have a once over to see if there are any dents, parts missing, etc…kinda like that) Made a mental note that he did have a gash on his right cheek. So, when I pick O up later, I’ll know that wasn’t caused by him! The 2nd bell ran and we told him that was the bell for the mommies and daddies to leave the room. He looked fine when we left. After partaking in the parent coffee in the lunch room, we swung back the room to have a peek. The teacher was getting the kids to sit down on their carpets for circle time. O was walking around the room. Of course I tell Peter, ‘Oh, no…O’swalking around the room!’ Peter responds, ‘hey, he is not screaming at the top of his lungs…that is successful’. So, it seems that our new parenting standard has been reset. Again. We just keep on lowering our standards 😉 Just kidding. Can’t wait to hear how his day went!

Oh…and a big, huge THANK YOU to our wonderfully kind yard waste collector, Rodney…who (yet again) realized that we forgot to take our yard waste and trash out and took them out for us. It certainly does take a village!

two days till blast off September 6, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
add a comment

Internal and external stress at a peak. Nails bitten. Everyone freaking out. Noise level at an all time high. Yep, it’s the week before school starts. Julian starts tomorrow. Oliver on Wednesday. Can I just say that the kids are in truly bad form this past week. I always try and focus on the good and work through the negative but these past few days that has been a true challenge!

I went to a fantastic seminar this past weekend sponsored by FEAT. A very respected lawyer in the Seattle Special Education community, Howard C. Powers, spoke on the whole IEP process and making the system work for you and your child. It was fascinating! I learned so much not only from the information presented, but also from the very well versed audience. Many parents who have a better hold of this system than I, and also an extremely informative staff of FEAT of whom asked some truly poignant questions. It was a very timely lecture to attend as we jump into the Seattle School District full bore this week. We are placing a great deal of our faith in the system to care the best for our child and his education. Although we have yet to encounter anything remotely similar to what some of these parents have had to endure, it was definitely good information to have in store for the years to come. It really opened my eyes to the process of IEPs and Special Education.

One piece of the IEP that I didn’t know existed was the ‘parental concerns regarding their child’s education’. Yes, you can submit a statement of YOUR concerns of your child’s education. There are so many critical pieces to the IEP. For the process to be successful, every part needs to be in place. The many different types of evaluations, the people involved, the absolute necessity to have everything in writing pertaining to your child’s education, the wording, the need for knowledge of what is available for your child, the need for knowledge of all of the parameters of your child’s disability, when to sign what and when not to sign anything. You could get lost in all of it, but ever so coincidently, I ran into a friend the day after this conference who is a Special Education Consultant and after telling her of the amazing information I took in at this conference, she told me how far kindness will take you in this process. Indeed! Granted, if I had to endure some of the situations that some of these parents have had to endure, I would be less than inviting in my tone. I know that a great portion of the calls that my friend receives are from parents who are mad and want to hold someone accountable for the disservice that they have received. Ugg…I get that, too. First and foremost, we should assume that everyone wants the best for our children and their education. I believe that. There is so much that is just plain subjective when measuring and evaluating the social skills of a child. I don’t want to enter this realm skeptical. We have no reason to be skeptical and have received amazingly appropriate services thus far. Cross your fingers that it remains the case for us!