Dylan

November 2009
Dylan is struggling more and more physically. Dylan is having difficulty getting up from the floor and frequently asks for help to get up. We ordered a wheelchair for Dylan last month. Although he doesn't need a wheelchair immediately, Dylan is getting less and less able to walk long distance and tires often. Dylan often requests to use a stroller or borrow one of his brother's wheelchairs when he is out in the community. Although Dylan doesn't understand his diagnosis, he does know that he is unable to do more and more things.

Additionally, Dylan's behaviors can be challenging in all environments. He doesn't seem to get the connection between his behaviors and the consequences of his actions. School staff describe it as a "disconnect." One minute Dylan is tearing apart a classroom and the next minute he is quietly playing. Dylan is unable to communicate his frustrations and instead he impulsively uses aggressive behaviors towards people and objects. We continue to consult with psychiatrists and counselors to try different methods of helping Dylan resolve some of his internal conflicts and deal with his frustrations in a more acceptable manner.

July 2009
Dylan continues to challenge us with his behavioral struggles. He is simply unable to tolerate even minimal frustration. We usually have to provide him a one-on-one adult to support him on activities and redirect Dylan before he goes into a full blown tantrum. We continue to work with doctors on a medication treatment plan to reduce Dylan's aggression and improve his impulse control. Dylan also seems to be slowing down a bit physically and he often complains of sore legs and tiredness while walking. This is an obvious progression on the Duchene's Muscular Dystrophy. In the community we allow plenty of time to get from place to place with lots of rest opportunities for Dylan. Occasionally Dylan will request sitting in a large size stroller after several hours on an activity. Dylan is enjoying the swimming pool now. He is able to swim and swim and play in the pool for hours without complaining of pain. Swimming will be a great activity for Dylan as the disease progresses.

May 2009
YouTube - Dylan scared of strangers Here is a fun little YouTube video of Dylan. Justin, one of our family helpers, shot this video.

March 2009
Dylan was recently moved from his K-3rd grade special day classroom to another 4th-6th grade special day classroom with his brothers Jarrod, Alex Q., and David. His previous classroom teacher got into unnecessary power struggles with Dylan. Over the past few months Dylan's behavior at school become more and more challenging. I could see by the daily notes home that Dylan was in a vicious circle of tantrums--punishment--more severe tantrums---more severe punishment-- and then worse tantrums...and so on. In fact the previous teacher actually called the Huntington Beach Police to the school to "talk to Dylan" following a particularly severe tantrum. This was such an inappropriate response to an already anxious 8-year-old developmentally delayed child. Not to mention I was not notified by the teacher of this episode, in fact I was actually told about this situation from David who came home saying that "Dylan was arrested at school today!" As you can imagine I was furious.

After calling all of the administrators and demanding an IEP, Dylan was moved to the new classroom. Since the administration staff were all in agreement with me that calling the police to school to "scare" Dylan was inappropriate, getting Dylan out of that classroom was easy. Now that Dylan is with Mr. Dihn he is doing very well. He has completed more work in the past month with Mr. Dihn than he has in two years with the other teacher. His daily behavior report is positive despite some behaviors here and there. I am overwhelmed with happiness to finally find a teacher who can work with Dylan in a positive way and to help Dylan begin to learn how to self-regulate his impulsive behavior. Dylan is also very proud of himself, which is the most awesome part of all!

November 2008
Dylan is really improving with his behavior at school. Although Dylan's behavior can wax and wane, the trend continues to improve. Dylan continues to have a low frustration level but he is learning to give himself a "cool-out" when he gets overwhelmed. One of the reasons, I suspect, that Dylan's behavior is improving is a definite increase in Dylan's speech intelligibility. Dylan is more and more capable to using his words to express his frustration instead of using temper tantrums. It is much more pleasant to help Dylan get through his issues when we actually can talk it through.

Dylan enjoyed visiting with his former foster family, Susan, Jake and Marina over Thanksgiving break. He looks forward to this annual event. Its great that Dylan and the family continue to have a relationship. Hopefully we can all get together again some time soon.

September 2008
Dylan had a great summer. For the first month he attended summer school for part of the day and participated in community activities for the rest of the day. After summer school concluded Dylan participated in both day camps and sleep-over camps. Dylan enjoyed the various activities at camp and he was very excited when he got to attend a sleep-over camp. Dylan continues to have good days and not so good days in terms of his behaviors. He continues to need eyes-on supervision when he plays with other children so that he can be redirected when he gets aggressive or noncompliant. Dylan is adjusting to the beginning of the school year. He has the same teacher as last school year and many of the same classmates. Although Dylan attends a specialized program for children with emotional disturbances, he continues to have significant behavioral challenges at school. We hope as the school year goes on that Dylan will settle down and there will be a good reduction in his aggressiveness and noncompliance in the school setting.

May 2008
Dylan just completed his first performance with MYART Children's Theater. Dylan loved being in the ensemble in the production of "Annie." After a shaky start Dylan was able to attend the weekly rehearsals with minimum behavioral support. Dylan loved wearing a costume and getting on stage. He can't wait for rehearsals to start for the summer production of "Oliver!" In the meantime Dylan is trying to adjust to his new school, Stacey-Clegg Elementary School. He is enrolled in the pathways program for children with emotional disturbance. Even with this level of support Dylan struggles with the rigors of doing classwork. We hope that over time Dylan will show the same behavioral and academic improvement that we have seen with Jarrod, who also attends this specialized school program.

November 2007
Dylan continues to remain physically healthy. Neither his Duchene's Muscular Dystrophy nor his liver disease seem to be slowing him down for the moment. Dylan continues to struggle with serious behavioral challenges at home, at school, and in the community. He can be severely non-complaint and aggressive in all environments. The teaching staff are finding it increasingly difficult to maintain Dylan in a typical first grade classroom. While his academic work is only mildly delayed, Dylan's behaviors interfere with his learning as well as the learning of other students in his classroom. Dylan's qualifying diagnosis for special education support has always been "other health impaired." Currently Dylan is going through a thorough assessment to determine if he qualifies for a diagnosis of "emotionally disturbed." It saddens us that Dylan struggles so much to maintain appropriate behavior, but we also know that Dylan has a strong genetic component for bi-polar disorder and severe physical aggression. We actually hope that Dylan can get a new qualifying diagnosis because we believe he will then be eligible for the behavioral support and counseling that he needs.

September 2007
Dylan is back in school...first grade!! While Dylan is happy to be back to school, he is much more interested in what he is going to be for Halloween! Every day after school that is ALL he wants to talk about! Big brother, Viktor, has been very accommodating taking Dylan after school to a different store each day with Halloween displays. Dylan is just fascinated with all of the various decorations and doesn't miss an opportunity to let Viktor know that each item is "fake" or "not weal!" So far the only item that Dylan has asked to buy is a large size scary looking plastic bat which is now hanging from Dylan's bedroom ceiling! Dylan claims his bedroom is now a "fake haunted house." We promised to bring out the Halloween decorations very soon!!

August 2007
Dylan has had a fantastic summer! He has participated in many camp programs. In fact Dylan had his first overnight camp experience with the Muscular Dystrophy Association. Dylan loved it! We were worried that he might get nervous or scared being away from home without his brothers, but as Dylan put it "he is a big boy now!" The experience went well and Dylan had a few stories to tell of the other campers who got in trouble but, of course, according to Dylan his own behavior was great. Its funny what seems important to kids at this age. Dylan has also enjoyed many trips to Wild Rivers, Sea World, Disneyland and the Orange County Fair. Dylan is full of energy and we are very lucky that there are so many different and interesting activities in our area for all of the kids.

April 2007
Dylan had some sad news this month. His former foster father, Bill (53), passed away suddenly while traveling out of town. Although Dylan was placed with us at the age of two, his former foster parents and foster siblings remained active in his life. Bill and Susan and their kids visited Dylan often despite having to travel quite a long distance. It was a tradition to have their family join our at Thanksgiving. Dylan definitely knew Bill and the family as people who cared deeply for him and Dylan was always very excited to visit with them. When we explain Bill's death to Dylan he was very sad. He asked immediately if his "mom Susan" was okay, and about his "brother" and "sister." This whole family clearly made an impact on Dylan's life and we hope that we can get together with Susan and the kids soon. Our prayers are with Bill's family.

February 2007
Dylan has been complaining about pain in his legs and has been more and more resistive to walking long distances. We believe this is a sign of a physical decline related to the Duchene's Muscular Dystrophy. The therapists are now discussing the use of a wheelchair for long distances. Dylan is such a hyperactive little guy it sure is hard to picture him in a wheelchair, even part time. On the other hand, it is clear that Dylan wants to remain involved in all of the community activities but is just unable to move quickly and walk long distances without complaining of pain or fatigue. Right now, Dylan doesn't have any complaints about using a stroller or a wheelchair when we are at amusement parks or the mall. In fact he is thrilled to be able to "relax." Depending on the progression of the disease, Dylan will likely be using the wheelchair quite a bit by the end of the year.

December 2006
Dylan is looking forward to Christmas. He is loving all of the holiday festivities, the lights and decorations. Dylan has been to several Christmas parties and has seen Santa Claus more than we can count. He especially enjoyed a visit to our home from Santa Claus. (Special thanks to Hess-Verdon and Associates who provided a personal visit with a very authentic looking and loving Santa.) During this visit Santa Claus actually sat down and spent one-to-one time with all of the boys. Dylan was fascinated with how Santa Claus arrived at our house since he couldn't see the sleigh and we don't have a chimney. Dylan asked Santa if he took the ACCESS bus to our house! Its so much fun to see Christmas through the eyes of a six-year old child!

October 2006
Dylan loves to learn. He was very happy to start back at school in September. Dylan's teacher reported that Dylan remembered most of the concepts he had learned last year. She was pleased with this as many children tend to lose some of their academic skills over summer break. Dylan is participating in a "Homework Club" one day a week with the older boys. Dylan enjoys studying with the "big boys" and really tries his hardest to work independently. Dylan is also happy that Daniel is in his kindergarten class. Dylan tries help Daniel and to be the 'big brother' to Daniel even though Dylan is a year younger. :-)

July 2006
Dylan is enjoying Camp James again this summer. Dylan is settling in to the day camp routine after sort of a rough beginning. Dylan is becoming increasingly independent in this camp program and is requiring less one-to-one support. It is fantastic to watch Dylan mature and increase his social skills. Dylan is an active boy and although there continues to be concern regarding Dylan's liver function, he continues to show only minimal signs of physical decline from the Duchene's Muscular Dystrophy. After summer Dylan will return to Perry Elementary School.

March 2006 Dylan (5) remains healthy and active. Dylan is learning how to roller skate now that he has mastered the razor scooter. Dylan loves to be on the move. Any opportunity he has to go to the park, he goes! Dylan also enjoys going to amusement parks and, of course his old favorite Chuck-E-Cheese! Dylan is getting to be quite an expert on the arcade games at Chuck-E-Cheese. He is just as good at arcade games, if not better, than other kids his age. Dylan gets lots of practice since he goes to Chuck-E-Cheese at least once a month.

January 2006