RE: Digest Number 1435

[Guest guest]

Rabecca

Thanks so much for the welcome. I am really hoping things will start getting better now, I am trying to seek out the services and therapies that will benefit him the most, and getting rid of what doesn't work. I like your comparison to the dart board, that is exactly the way it feels most of the time.

ita

-- Hello from a New MemberHello,I just joined this group late last night. My name is ita, I am themarried mother of five children, who is 21 and expecting her firstchild in Sept., Krystle who is 17 years old, Ricky who is 15 years old, Nickwho is 14 years old, and Angie who is 6 years old. We live in NorthwesternPA near Erie.Nick was diagnosed with Aspergers Syndrome this past November. Previouslyhe diagnosis was PDD. Additionally he has been diagnosed with ADHD, OCD,Anxiety Disorder, and Conduct Disorder.Here is some of our story. When Nick was born he was a bright eyed, alertbaby. Then when he was 18 months old he spiked a high temperature of over105 and had a seizure. He was hospitalized for 5 days as doctors struggledto bring his temp. down. Finally he temp did return to normal and he wasreleased from the hospital. After he came home, I began to notice he oftenhad a glazed over distant look to his eyes, they were droopier than normal.Despite my worries, I was told nothing was wrong, and that I wasoverreacting. I still to this day believe this is when his problems began.As a preschooler, he was hard to handle. He preferred to play alone, anddidn't like to be held much. He did not seem to connect to me or anyonearound him. Once he started school, he was promptly diagnosed with ADHD andprescribe Ritalin which only made him more difficult to manage (but madethe school happy), they then changed him to Adderall. (same results) Hisbehavior continued to become intolerable. I finally convinced the familydoctor to refer him to a neurologist when he was 7 years old. Who in turnreferred him to a psychologist. The psychologist was the first to diagnosethe PDD and referred him to a child psychiatrist. He was then diagnosed withPDD, ADHD, OCD, Anxiety Disorder, and Conduct Disorder. He then prescribedRisperadal, Paxil, and Trazadone. He took him off of the Adderall. He wasbecoming a nightmare to handle the older he got. He was/ is very compulsiveand would just do things. Such as waking in the middle of the night, andsetting fire to the basement when he was nine, and killing our pet cat. Icouldn't get a babysitter for him, outside of grandma or his oldest sister.Then in 5th grade he touch a female classmate in the but, and kissed ayounger boy. The school filed charges and he became involved with juvenileprobation. He was then placed in a group home for juvenile sexual offenders.They then realized he did not belong there (they actually kicked him outafter 3 months and put him in a delinquency shelter until they could find abetter place for him) . His information was sent to one place, but theydeclined to accept him saying he was too needy for their program. Finally hewas accepted to Children's Center. A residential center forchildren with behavioral problems. While there, the treating psychiatristtook him off of risperadal (the only med that ever seemed to help) and puthim on tenex (a blood pressure med) that was supposed to work wonders, tookhim off of trazadone and put him back on adderall. While there he stole keysfound a lighter in the yard and started a fire, openly masturbated, andexposed himself. Despite all of this he was released home in August of 2003(basically his discharge papers state they couldn't do anything for him).After coming home he still attended their school being bused 45 miles oneway daily and received his medical/psychiatric care in school. This was whenthe psychiatrist diagnosed Aspergers. The in home services he was prescribewere family-base mental health services. He had two therapists who came tothe house three days a week to work with him and the whole family. Nothingever seemed to get resolved or to help. Their suggestions of reward systems,and a three count did nothing to impact him. Then in Jan, he was transferredto our local school in a full time emotional support classroom. Hisprobation came to an end. And we were able to get another Dr. She then puthim back on risperadal (replacing the tenex). He began to improve again.Family based services came to an end(6 months max) and he got a mobiletherapist (through wrap-around)who works with him three hours a week. In themeantime he got into trouble again, as his youngest sister accused him oftouching her. So he became involved with probation again. However afterextensive interviews with my daughter and a medical exam, we put our mindsat ease that nothing occurred( He is naturally over affectionate which madeher uncomfortable, but he did not do anything that he should not have done).He was sent to another dr. to find him mentally incompetent. Therefore thecharges were dropped, and juvenile probation referred us to children'sservices. They informed us that all of the services he has received so farare not right for him. They gave me information for the Gertrude BarberCenter which has a Autism/Aspergers program. They also provided me withnumbers for other services as well. I have a MRBSU case manager who iscoming to the house next month to see if he will qualify for a case manager.I am still waiting for his present psychiatrist to refer him to the BarberCenter. I work full-time and am going to school two nights a week pursuingan associates degree, and my time to call to find out what is available islimited. Most of the time, I feel as all I do is leave messages and neverhear back. My employer is as supportive as possible, my supervisor allows meto use her phone during the day as needed, and they gave me FMLA for Nick. Anew service I just qualified for was Out of home stabilization. (sort of arespite program but again for mental/behavioral health). We were approvedfor about 8 days a month. However the way it works is the child has to wantto go and can choose to go home anytime they want. He decided Tuesday hewanted to go and stay a week. Well, I had to miss half a day work to takehim, only for him to decide late Tuesday night that he wanted to come homealready. The place is an hour away from us. So, I had to pick him up Tuesdaynight. We think the program gives him to much control as his mentalreasoning is at about a 5 year olds. We don't think we will try that again.My 17 and 15 year olds watch him during the day while we work which is aconstant worry. He is too much for my husband and myself to handle most ofthe time, let alone them. But, what are my choices we both have to work. Idon't know what I will do when they leave home. We are frustrated daily, donot know what services we need yet, where to find them, or even the bestways to cope/manage Nick. We want nothing more then to see Nick reach hisfull potential, whatever that may be, and be as successful as possible.Presently he is taking only risperadal (just had his dose doubled) and paxil(dose increased last month to nearly double what it was).Sorry if I rambled on to much. My time on-line is limited between work,school, and my family, and we camp every weekend from April through Oct. soI may not always respond in a timely manner.Thanks for listening,ita