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June 17 ZAC Browser - Invite parents
Morning........
UP in the morning, kids ready to go... mom I want breakfast, mom i want the computer, mom, Emilly is bugging me, mom I want a twinkie for breakfast!
Summer is no exception to crazy mornings.......thanks to summer school. June 09 SARAH J CLARK: Car Karaoke - Lost in Oklahoma
SARAH J CLARK: Car Karaoke - Lost in Oklahoma Click to see my AWESOME Sarah Yvonne (queen of the Electric slide..sorry Sarah...I STILL never learned that dance!) as she sings her way down the road, proving that people can truly stay who they were when they were kids! OMG! Do ya ever get tired girl?
LOVE, LOVE, LOVE that girl, she's one of the few people I know who live life like it should be, full on and with a smile!
Laramy June 03 Medicaid Rejects medication for kids under age 6June 1, 2008 Dear Sirs, I have been awake this morning since 4:30 a.m. because my son, Matthew, woke me up again. He continued to get up every 10- 15 mins, which was upsetting to us both. Thankfully, my husband and daughter are sleeping like logs, and don’t know the discomfort the rest of us are feeling. I lay awake for several minutes, trying to ignore the plain fact. It is because of a shadow of a bureaucracy lurking in an office somewhere that we, my son and I are being deprived of our rest, and our peace of mind. If my husband were awake, he’d be as upset as Matthew and I are. Let me make clear my case. Matthew has an Autism Spectrum Disorder. He was diagnosed just after he turned 3, when we lived in Columbia, MO. We were fortunate to live in an area for 4 years where there were therapists, county resources, and Doctors at the Autism Center to diagnose him, and help us with how to help Matthew function daily. We were able to use tools and strategies presented to us by Judevine to reduce meltdowns, deal with sensory malfunctions, and communication tools to help Matthew utilize his potential. He is an incredibly loveable, smart, verbal child, with a strong desire to please, and to feel happy in his daily life. These resources allowed us to live with the Autism, and help Matthew to function in public and in private, as the wonderful little boy we knew he was underneath his struggle with his body. Medication was recommended to us multiple times, but at 3 years old, we felt that would be a disservice to Matthew, because we didn’t want to be the kind of parents that medicated their child to suppress them, and just shove their personality down. We wanted to help him without suppressing him, we didn’t want a zombie for a child, we wanted our Matthew. So for 2 years, we utilized the strategies that were taught to us by Judevine staff, Occupational Therapists, and other medical professionals in our lives. We worked with Matthew daily, and saw huge leaps in his development, and his function in daily living. He was able to go to noisy stores, and survive a short trip without more than 2 meltdowns. He was able to vocalize his needs appropriately more often than he resorted to maladaptive behaviors. He was able to verbalize when he needed assistance with his sensory issues, rather than seeking input in aggressive ways, or becoming aggressive when he needed to avoid further sensory stimulation. Despite our tools and strategies, however, Matthew still had difficulty with social aggression, focus on tasks, attention, impulsiveness in stressful situations, sleep disturbances, and hyperactivity. We struggled with these symptoms of his disability, because they were ‘leftovers’ that were neurologically based, and not something we could fix with contingencies and strategies. They were beyond our scope of help for Matthew, and he was suffering for it. He received discipline at school for symptoms of his disability, he was shunned by peers due to his meltdowns, and he was unable to maintain attention to task, or comply with directives when he was over-stimulated in a stressful setting. He spent much of his time agitated, upset, and these led to aggression towards his parents, and sister at home, and meltdowns and discipline in his preschool. Once he had a 2 hour meltdown in preschool which resulted in multiple time outs, and a removal from the after school program for the day because no one could ‘handle him.’ It all started because of a change in his day that he was unprepared for, and could not understand. It ended with our child worn out, crying, shunned by his peers, singled out for his symptom of his disability…..as a change in routine is at the core of Autism difficulties. Matthew couldn’t control his symptoms, and couldn’t calm down, and couldn’t reason through the problem. His disability was controlling his reaction to a problem that was out of his control, and he was unable to navigate the situation in an ‘appropriate way’ that allowed him to move past the ‘glitch’ in his schedule for the day. A ‘glitch’ that cost him a snack, a recess, and caused his peers to be afraid of him, his teachers to punish him for his ‘behavior’, and the after school workers to shun him because they couldn’t ‘deal’ with a child like that. It was heartbreaking to him, and to us, as his parents because we knew he wanted to ‘be good’ and knew that when he was told to ‘get it together’ that he really was trying to comply, he just couldn’t, his disability wouldn’t let him. Because of these things, we inquired about medication to Dr. Tracy Stroud in 2007. We felt that we’d all done as many things as we could to avoid it. We given occupational therapy, had ear tubes placed due to multiple ear infections, (to help his overall health, and attention), removed his tonsils and adenoids due to their enlargement and sleep disturbances caused by their blockage of his airway at night, which was hindering his sleep (which could lead to irritability during the day). We had utilized his educational, community, and medical resources available to us. We were not looking for a cure to Autism, we were looking for something to help Matthew be happy, and function at his potential, without suffering from the fog of symptoms he seemed powerless to defend himself against. We spoke with Dr. Stroud, and tried to make it clear that we didn’t want to lose our child to a fog of medication. We both knew children who had been medicated to relieve the discomfort of the Parents, not to help the child. That was NOT what we wanted for Matthew. We wanted to find our son among his symptoms, not numb him to the world around him and make him disappear. We wanted him to function at the peak of his abilities, not push him down with medicines that would make him a zombie. We wanted him to harness his energy to motivate and help him, not remove his will to investigate life on every fascinating level. Dr. Stroud went down a list of medicines that were available, and which ones she felt might be an option for Matthew. She was very patient with us, as we struggled with the decision, and took lots of time to answer our questions about each possibility. We discussed which ones were absolutely unacceptable. The ones that would remove his appetite, or make him have side effects that might be more than he could handle. Because we wanted him to remain “Matthew” we immediately weeded out the ones that were not right on face value. Because he is small, and prone to problems with lack of weight gain, and issues related to eating that stem from his Autism Spectrum Disorder (selective eating, refusal of certain foods, narrow food interests, etc.), we were adamant that he not lose weight or health while on a medication. We began testing Strattera as a morning dose at the first, because Dr. Stroud recommended it as a medicine that would have the least undesired side effects for Matthew. Within 3 days, we realized how much of a change we were seeing in Matthew. For his sleep issues, Dr. Stroud recommended Clonidine, .01 mg with a half pill administered nightly. This improved his sleep onset immediately. By the time we were on a split dose of Strattera daily, his night time wakings were significantly reduced. Instead of 10-15 wakings per night, his wakings were reduced to around 5 per night. Also, he no longer struggled for 2-3 hours to fall asleep, instead he began falling asleep within 30 mins of being put to bed for the evening, and remained asleep for 2-4 hours before his first waking in the middle of the night. He was more calm for longer periods of time. He paused somewhat before responding to a negative situation, and at times, attempted to deal with it calmly, instead of becoming aggressive, or melting down. He was able to sit and attend to tasks longer, with less movement, distraction, or frustration more times than usual. He was able to sit and play with his sister more often while not only tolerating her presence, but sometimes allowing her to take turns with him, and change his play area, or touch his toys, without hitting or pushing her. We were happy at the positive changes we were seeing, and sad that we’d waited so long to allow this treatment for our child. It took several weeks of trial and error, and closely watching Matthews behavior, sleep patterns, eating patterns, and overall wellness to decide which mg strength, and combination worked well for him. We noticed that the medication didn’t seem to be effective past a certain point in the day. We noticed his behavior was massively improved within 2 hours of taking his morning dose of Strattera. We noted that in the afternoon he began demonstrating disorganized behavior, aggression, frustration, agitation, and overall discontent. We communicated frequently with Dr. Stroud, and it was agreed that we would try a split dose of Strattera, one for morning, and one for afternoon, at the dose of 18 mg and 10 mg respectively. The change it made for Matthew was such a positive one. He no longer received reports daily of misbehavior at school, they were reduced to less frequent occurrences. He began tolerating the times when his little sister would ‘interfere’ with his playing, or move his toys around, and occasionally allowed her to join in, and make choices about how they would use some of the toys. If she upset him, he began to tell on her, and let us intervene, rather than impulsively hitting or pushing her. He began to recognize when he needed a ‘break’ and needed to be alone, rather than acting out when he became over-stimulated. He began to tell us when he needed help with his sensory issues. He began to recognize his own body cues. He began to actively participate in preventing meltdowns, by treating issues before he couldn’t deal with them. He actively came to us for assistance, rather than us following him around, trying to avoid little disasters throughout his day. He seemed to be more aware of the difference between days when he had medication, and days when he hadn’t yet had his dosage. He became able, over time, to tell me when I’d forgotten to give him his medicine before school, and actually get onto me for it!! THIS from a child who spent years, kicking and screaming when ANY medication needed to be given, no matter HOW sick he was!! He began to recognize that taking the medicine was important to how well his day went for him. At 5 years old, we never dreamed that he would be so aware of his functioning on a medication and off of it as well. Yet, Matthew will tell ‘Mom, you forgot my medicine this morning, and I had a bad day. I didn’t listen and I had to pull a card’ Or tell me that he felt bad and couldn’t sit still or follow directions in class. We moved in November 2007 to return to South East Missouri. The resources here are lacking. There are no Occupational or Speech therapists to be found. Most are tied up with the schools, and do not have time for private therapy. We have few supports from our local regional center, as we are STILL on a waiting list for the past 7 months, waiting for services. We receive some support from our local Judevine office out of Cape Girardeau. We mostly rely on our knowledge of our child, and the things we’ve learned in the past 3 years, and do the best we can with what we have. One bright spot is Matthew’s pediatrician here, Dr. Claudia Preuschoff. She was Matthew’s Doctor when he was born in 2002, prior to our move to Columbia. We were able to begin seeing her again, and she continued with Matthew’s treatment as it had been with Dr. Stroud at the Thompson Center for Autism in Columbia. We discussed the medications that Matthew was on, and continued to evaluate how his medication was affecting his daily life, and if it needed any adjustments. We inquired about other medications that might be an aid to the Strattera for Matthew. Again, we wanted something mild, but effective, that would help Matthew throughout his day. We tried Adderall in a 5mg and XR 10 mg form, but felt that they interfered with his sleep and his appetite more than was acceptable. We also saw some symptoms that we were unsure about, and attempted to evaluate if they were medication related, or due to some other influence. We didn’t feel that Adderall was appropriate for Matthew at that time. So Dr. Preuschoff recommended Metadate CD 10 mg. She told us that it was similar to the Adderall, but was found to usually have less effects on appetite. We agreed to allow Matthew to begin taking it on a trial basis, as we had done with the new medications in the past. We began seeing positive effects within days, and noted that Matthew’s appetite improved, compared to the Adderall, and that there were less incidents of impulsive aggression with his playmates than there had been with the Adderall. He also seemed less agitated in general, and more willing to pause before reacting to an unscheduled change in his routine or expectations. He was easier to reason with, and actually began to be able to take the time to problem solve when a difficult issue presented itself. His impulsiveness overall decreased, his aggression became minimal, and his tendencies to have oral sensory issues decreased somewhat. Then, in late May, we had a major problem arise. On May 27th, we visited Dr. Preuschoff for Matthew’s monthly medication evaluation appointment. It was then we discovered that Medicaid/MO Health had begun to deny the very medications that Matthew needed. I knew something had happened because I tried to fill Matthew’s Strattera at Wal-Mart, and Medicaid refused to pay. I thought at the time that it might be a timing issue, that perhaps I was trying to fill it a few days too soon. So I told them I’d come back in a few days and have them run it through again. So when the Doctors office filled me in, I called MO Health myself. I was informed that it was the Dr. ’s responsibility to provide documentation that Matthew needed these medications. I was informed that MO Health would never ask for the impossible, and that what was needed for prior authorization was well within my Dr. ’s grasp, if they would only comply. In the mean time, we, as the family, are supposed to just wait. We cannot afford the medications on our own. So we have to rely on a few samples that we received from the Dr. ’s office, and the remaining pills we have. Again, we are doing the best we can with what we have available to us. Since Matthew’s medication changes, we’ve seen a drastic regression in his behavior and functioning. He has begun to seek sensory input by hitting his head with his fist at times, he licks objects and people, chews on his clothing, and is again waking up frequently in the night, unable to go back to sleep. Prior to the loss of his medications, he had begun trying new foods, now refuses those new foods, and has regressed back to his limited basic menu of chicken nuggets, bologna, milk, and ketchup with everything. He has problems listening, by his own report. “I have a problem listening.” He has incidents of property destruction, increased meltdowns, reduced tolerance of his sisters presence during play, isolation during play, rather than playing with his cousins, and sister. He yells out when upset, makes odd noises such as quacking, and mouth noises, and picks at his skin, sometimes causing his lips or skin to bleed. He has had repeated incidents of throwing things, kicking, screaming, and has begun pushing his sister and hitting her again when upset, rather than coming to an adult for help. Prior to the loss of his medications, he had begun to assist somewhat in his dressing each day, now, he has returned to running away and screaming and fighting when it is time to get dressed. He jumps on furniture, runs into people, and cannot stick to a task, even when it is a desired activity. He is easily frustrated, and easily distracted from his tasks and playing. He is easily over-stimulated, and when this occurs, he begins showing aggression, frustration, cries, yells, throws things, kicks, sometimes hits himself, and attempts to run away from the area to be alone or meltdown. Since beginning summer school May 28th, he has gotten his name on the board multiple times, pulled his tickets, and lost the privilege of eating a popsicle with his classmates, a very upsetting punishment for him for not listening to his teacher, and making noises with his mouth during class. For a child who was deemed NOT a behavior problem at the end of Kindergarten, to a child who has been in trouble 3/3 days of summer school. From a child who was beginning to function in his family and community to a child who becomes easily agitated and overwhelmed again. All since his medication was disrupted. We believe the regression is obvious. The major change is the medication. We see the effects at home, and now we see his attention at school suffering No amount of strategies or tools can correct the things that medication assists with. If we could do it without medication, we absolutely would. We dislike giving medication to Matthew, but we now realize exactly why we agreed to medication to begin with. Matthew needs the benefits that these medications provide for him. We have found a good combination for him at this point in his development. We have been very careful to find medication that doesn’t change who Matthew is as a person, yet helps him function at his highest level possible, with minimal side effects that we all can live with. To now lose that tool is overwhelming for us. Matthew is very aware of the change, he knows that something is wrong. He is very aware that he is having more problems in the past week. He is very aware that he can’t control his own body, and stop picking, chewing, quacking, fidgeting, yelling out, melting down, over reacting, getting upset, feeling frustrated and has a harder time listening, following directions, following rules, waiting, and living with his sensory needs. These things are harder to tolerate now, for all of us. His parents, sister, grandparents, cousins, aunts and uncles all see how different he is, how out of control he seems. In just one week, we have lost nearly a years progress. We have lost a piece of the treatment puzzle. All because Mr Redtape behind a desk somewhere who is looking for ways to save money. Because this person, or group of people do not know anything about Autism treatment. That each child is individual, and therefore, the treatment is not a cookie cutter treatment for a group of kids. We, as parents, work diligently with Drs., therapists, teachers, case workers, and others to find what is right for MATTHEW. We are not trying to just give him a blanket treatment, or give him the ‘one size fits all’ approach. We are very aware that what works for Matthew may not work for anyone else. We acknowledge that on paper, it may not look like much, but for Matthew, it is everything. A delicate balance. It is his life that this red tape is screwing with. He suffers because someone wants a fax, or a ratings scale that doesn’t exist. If you want to know that his treatment is valid, that his medication is helping or harming him, then talk to the people who live with him daily, his parents, his teachers, his family, and even Matthew. He might not be as educated as Mr Redtape, maybe not as eloquent, but he knows how he feels when his body betrays him. When he can’t focus, or do what he wants it to do. He knows misery, and sadness when he feels out of control. He knows when he’s been punished for something that he can’t help. He knows that his disability makes him vulnerable to being in trouble, unhappy, and out of control of his own choices. He knows that his medicine has helped him. He knows that the medicine has been changed. He knows that Dr. Preuschoff and Mom and Dad are trying to help him. He is trying to be patient, and ‘be good.’ Trying to not get lost in a fog of symptoms. Yet, he wakes me up 10 times last night, and has been up since 4:30 a.m. He is yelling, quacking, licking, spitting, can’t stand to have clothing on his skin, tolerating his underwear, but turns it down to avoid the sensation of the tag on his skin, fidgeting, fussing, agitated, yet strangely, in good spirits between episodes. He woke his sister up at 5 a.m. with all of the noise he was making. He wails every few minutes with no apparent source of discomfort. He bounces in place on his bed, chewing at his lip, scratching at every scab, itch, odd spot on his skin. Flapping his hands. Unable to allow his sister to sit next to him. Needing a wide berth of personal space from anyone touching him. Can’t even tolerate a hug. All of this, and it isn’t even 8 a.m. yet. We have 12 hours until bedtime tonight. I wonder how the rest of the day will go, how much worse it might get, how many meltdowns he will have. What can we do to prevent them. How can we protect him from the agitations that will follow as his day gets more full of noise, people, sensations, and frustrations? A tool from our tool box has been removed. How can one drill a hole when there is no drill? Or attempt to hammer a nail with their bare hand. Emotionally, this situation is just as frustrating to our family, and to those who know Matthew so well. How can we all be expected to accept this, when we know now what this medication helps him with? This part of his treatment is as necessary as love, patience, contingencies, strategies, and anything else available to us. To be denied this treatment is an injustice to Matthew. To be delayed in receiving medication that he’s found helpful is torture. To know that there is something out there, but Mr Redtape just won’t let him use it……is just cruel. Like denying seizure medication to person with epilepsy, or denying insulin to a person with diabetes. Why should a child with Autism Spectrum Disorder be denied the medication which alleviates the symptoms which torment him? Such a denial is discriminatory, and intolerable. I send this to you in hopes of giving some information which might help someone understand the desperate state our child is in. Denial of all of his medication is pushing him into regression. He is alienating himself from us. Isolating himself from us behind a fog of symptoms. All that he has gained is being jeopardized by Mr Redtape. No amount of therapy, patience, and love can fix a neurological issue. So please don’t tell us to find something else to do for him. We tried for 2 years to do all we could without medication. With the help of specialists, and Drs., we finally allowed medication to become part of Matthew’s treatment. We realize that he needs it, and without it, he will regress, and lose the independence, and progress he has made in the past 11 months since beginning his first medication. Please make amends with this, and allow our son to continue with his medications, prescribed by his Drs., and monitored by us. Otherwise, we require a hearing to resolve this issue, which has been documented in your letter to us dated May 22, 2008, which I am enclosing a copy of. Sincerely, Laramy Montgomery The Montgomery Family (Matt, Laramy, Matthew, and Emily) 573-429-2164 cell medicaidhttp://www.dss.mo.gov/mhd/cs/pharmacy/pdf/adhd.pdf April 22 Sooo Tired!I don't understand why my body and my kids have my sleep so messed up. I FINALLY get the kids to sleep nearly all night, and my body wakes me up at 3:45 a.m......WIDE awake.
So I browse the internet. Look for real estate. After all, we need to be moving closer to Matt's work as soon as school gets out. But I don't look forward to the packing. But once IEP time is done, we really need to get a move on. Dragging our feet will only make it harder to get Matthew settled into a new school, wherever that may be.
Seems so busy around here, yet so boring too. I guess that means in a lot of ways, our stress level is down. Matt and I have time to go fishing, play pool, and visit with family. Better than driving 8 hrs in a weekend to cram in a visit once a month. But as the kids get older, and we are closed in such a small house, it gets harder to do things around here. I can't even clean house at 3:45 in the morning for fear of waking everyone else. So to a certain extent, there is less freedom here than in Columbia, but there we didn't have the family support to give us the alone time to choose our activities. So there's always something to gripe about I guess.
ON the good side, Matthew is happy at school. Seems to care about takng things to show his class, even though I doubt that they are as excited about model railroad magazine as he is. I just hope he doesn't get teased, or in trouble for taking it.
Oh, I think I will ry to lay down for a few minutes. Maybe a nap will get me through the after-school rush, and make it to bed. I just hope that tonight I can find a way to get 8 hrs, and make my body accept it!
Sunflower Bee, Inc.This company is offering Autism journals for families at a discount until late June. Worth a look, however, most of us computer savvy moms could whip up a substitute to get us by until then, if not longer. And those of us who are in the daily grind of Autism rarely have time for bon bons and journaling, so perhaps a scaled down version for those of us who aren't in the early stages. I think that first, one must get past the diagnosis and initial puppet string pulling of scheduling initial evaluations, therapies, and service coordinations. Perhaps then this level of record keeping wouldn't be as taxing on the time of the adult in charge of such detailed record keeping.
This actually models my current record keeping in some manners because I'm all about binders, hole punches, dividers, and sheet covers. Moving to a new area was a big challenge, because services are NIL here! So it has given me time to look at the past 5 yrs of Matthews life, and get it in 'order' as far as the paperwork is concerned. Now if I only had more time for bon bons and soap operas like I've been told that Stay at home Mom's are entitled to... ;) Peace, love, and bubble baths......
Laramy |
As the parent or caregiver of a autistic child you know so much about psychology, sociology, pharmacology, local government, school systems, insurance processes, and above all love . You are truly the ultimate advocate and best supporter of your child - and this amazing task is very challenging! Because our daughter faces so many of the same challenges with her autistic child, Zackary, as you do - we understand that you often feel alone when trying to navigate a way to provide your child with the BEST quality of life possible. 
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