on our own
hello all, i am new here, i signed up hoping to find help, friendship, heck just to let off some steam, my 8 year old Donovan, we call him donnie, is a caring, loving, happy little boy, he's sensitve to others feelings, if you cry he wants to comfort you. he's recently been diagnosed with PDD-NOS, and ADHD, he's currently in an 8.1.1 class on Methylin, Risperdone, and Zoloft. such extremes for a young mind and body. i feel lost not being able to shelter him from all the evils he's facing, he has no friends, spends most of his time with me or his dad. I'm frustrated with the school because i'm not sure if the classroom setting is right for him, i sometimes think he needs a specilized school to help him organize better.
his reading, math, and speach is below average i feel like a failure working fulltime no sleep constantly having to do smiple things for him because he's so forgetful. we live in long island ny, knowing no one here we both are isilated from the world. even with his disability i wouldnt change his joyful personality, his caring soul. just wish life wasnt so hard for my little munchkin. any help, guidence, or a listening ear would be so appreciated.
thanks all
kecia
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Hi Donnies Mom,
Hi Donnies Mom,
When I was reading your blog, some of the things you wrote reminded me of my daughter, Lala. She also likes to comfort others when they cry. Some of the things you wrote reminded me of me. I have felt guilty for working full time too. I started blogging a month ago and it has helped me so much. We are all in this journey together and we want the best for our children.
I did have some questions for you. Is Donnie currently getting any speech therapy? What is an 8.1.1 class? Have you thought about visual schedules to help him remember things?
If you are like me, I need strength to help me going sometimes. Here are some scriptures that have provided me with strength when I felt like I had none:
Jeremiah 29:11, John 9:3, and Psalms 108:13
I didn't always believe this, but I know that Lala has Autism to make my family closer, to make me a better mother, a better teacher, and a better person. If I make mistakes then I try to remember what Maya Angelou said, "When you know better you do better." That has helped me a lot on this journey.
Take care,
Lala's Mom
Hi LaLasMom,
Hi LaLasMom,
I guess we all have similar stories, i'm hoping to look back at these days that are oh so trying and say it was all worth it.. look at my collage graduate. to answer some of your questions, and by the way, THANK YOU for responding..
Donovans' class is an 8.1.1 which is, no more than 8 students in his class and it has 1 teacher and 1 assistant teacher. He also gets speech Occupational Therapy, and phycological services, he also has a shadow, who helps, keep him calm, when things become overwhelming,
it has been an ongoing struggle he doesnt transition well, not liking that change, has poor memory, i can tell him a word when reading and a second later he has forgotten it. gets distracted easily, ect ect.
the medications help with staying seated and focasing, the extended release medications like focilyn made him extremely agressive.. nightmare!
Does your daughter, get services? have they helped? what would you say is the biggest change this year? and How old is LaLa?
Has the school been helpful in giving serices without worring about budget? i'm having the fight of my life now.... lots of questions i know :)
Thanks
kecia
Hello Donnies Mom
Hello Donnies Mom
I am currently in my master program in special education. It is really sweet that your son know how to express such emotions. This is such a plus!
Can you help explain to me what is 8.1.1 class?
If you want to learn more information about school system especially special education classroom you can visit http://www2.ed.gov/about/offices/list/ocr/edlite-raceneutralreport2.html
Let me know if you need any other support or what you are find difficulty.
-KN
Hi KN,
Hi KN,
Thank you for the response, i hope my top five list was helpful, its wonderful your going for your masters, children with special needs, have limited options i know for me i have to research research research, and even after i research i feel as lost as i have in the begining of my search.
not too many straight forward answers i tell you, just wish there was a place where all inforation can be obtained in one place for all children no matter the specific diagnosis so parents can spend less time researching and more time working to help their loved one..
To answer your question about 8.1.1. it means, No more than 8 students in a class with 1 teacher, and 1 teachers assistant,..
i do have a burning question, is the IEP just for the student to learn basic acidemics or more life skills? Having a time getting my sons' IEP more specific..
thanks for the link too...
kecia.
Hello Kecia,
Hello Kecia,
To be honest I am a behavioral interventionist (providing 1:1 services at home and provide 1:1 services at school setting as a shadow aide) therefore, I do not have a lot of knowledge on IEP. My master program is in Special Education with an emphasis on BCBA. I haven't learned much about IEP in my program so far. However, I will provide you with information from what parents have told me!
Most of the time for grade school the IEP goals will be academically related. However, parents have told me they got basic life skills in there but they had to provide valid reason for this. In CA some middle school/junior high school have life learning skills; therefore, it will have these skills in the IEP depending on the school. For high school, there are 2 tracks parents can enroll their kids in. One track is the academic track, where students will get their high school diploma. The other track is for students to learn more life skills (take city bus, how to cook basic food, work at X store for 2 hours to prepare them later on in life, how to do basic chores, etc.). However, I have seen parents sign up their child in both tracks. I hope this will help.
As for the website, I totally agree. I am always researching and it can be difficult. I forget which information came from which site as well.
If there is anything I could help with, please let me know.
Can I ask you a couple of questions as well?
1: How did you feel after finding out your child’s diagnosis?
2: What are your frustration with your child’s school?
3: Do you feel guilty for not having enough time with your child with autism because you have to work full-time?
Thanks for responding,
KN
Hi KN,
Hi KN,
My son has a (shadow) in school, she's a GEM! paitent and kind, Donovan loves her, school year is about to come to an end and she offered to spend time with donovan over the summer. When is Graduation for you? I'm sure it's a rewarding job, bonding with kids and watching them flurish.
To answer your questions, when i recieved the diagnosis I honestly felt relieved, We have had test after test after test, from autism to MRI's, the only diagnosis we had recieved from the age 4 1/2 was ADHD, but we knew something else was wrong, his speech made no sense to no one but him. So, to finally know, means I can finally search for services for him and us to be able to help him progress.
I will say, our school district is probably like most in the US, you must show your willing to fight like hell to get the services needed to help your child. They have given us mostly what we asked for in our CSE meetings, they see two concerned loving parents that wont take NO for an answer, it has been times the threat of a lawyer has had to be anounced, but again for the most part he's recieving all the services we asked for including a shadow.
Working full time is challegeing, I am a NYC Bus Operator working 40 miles from where i live and getring up at 2am to be in at 4am to be home by 3pm to meet the school bus, hubby and I work split shifts he puts him on the bus i take him off, i am the homework, cook, after school activites, doctor appointments maiden. I wish i could be the stay at home mommy but, in these times NOT possible.
I am glad you love the shadow
I am glad you love the shadow aide =) In the future for some reason if you need a new shadow or behavioral therapist/interventionist and find differences, just keep in mind that person may not be the perfect fit for your son!
You really have to fight and many parents have told me the same! Heck I am not a parent yet...but I will sure fight my heart out if I was a parent as well. Keep up the FIGHTING!
-KN
Hi KN,
Hi KN,
unfortunately, I have NO say, in who his aide will be next year. The cut backs schools are doing, this lovely women is not sure if she is coming back. I can beg, plead, write glowing letters, but no garrentees. She is a GEM. BUT, be sure, whoever he gets next year, i will make my presence known...
kecia
Hello Kecia,
Hello Kecia,
I hope you are having a better day today and things went well. I know it can be hard and a big adjustment to have new aides. It may take times.
I am trying to compose a list of website for the parents I work with to help them. I am looking for other blog website or any other website that other parents have found useful. I thought this will be useful for other parents.
I have some of my own already, but I want MORE. If you have any, can you help me with this?
Thank you,
KN
Hi KN,
Hi KN,
Unfortunatly i'm learning as i go too, would be great to have that one site that has it all..
I did have a very productive meeting last Friday, met with the school psyh, principle, and remedial reading teacher, and was promised.. (fingers crossed) that his aide will remain the same next september, and all the other xtras i fought this year for.. like pulling teeth.. really!
if i come across anything with websites i'll gladly let you know.. shared info is the best info :)
kecia
According to FEDERAL LAW, the
According to FEDERAL LAW, the IEP is to enable *every* student, regardless of disability, to have the opportunity to become a productive citizen. The law allows for failure in this respect, but that's the goal.
Never give up. Never
Never give up. Never surrender.
That is what my special needs son is teaching me, and it turns out in my high functioning autistic way, I'm good at it too.
The only failure is in avoidance of trying. Even if he doesn't read before age 25.
Hi Seebert,
Hi Seebert,
THAT IS THE MOTTO! NEVER NEVER GIVE UP!
I am at times exhausted to the bone.. not knowing what to do, if i'm making all the right decisions, asking the right questions.. I look at this child and say no matter what, I MUST KEEP GOING, DO IT FOR HIM, HE DESERVES MY EVERYTHING!
Thanks for the reminder.
kecia
Hi Every one,
Hi Every one,
Blogg day.. Friday, I have a appointment with the school Psychologist. I want to go over Donnie's IEP for the 2012- 2013 school year, Make sure he's recieving enough of everything. I want donovans' IEP to be very specific, one thing i am learning is you must stay on top of the services your child recieves IE, updates from the teachers, daily.. Donovan responds well to rewards he will be less uncooperitive if he's working for something.. sort of instant gradification! has anyone had success with this method?
Knowing where i've went wrong this year i'll be better prepared next year! Learning something new every day!!!!
Kecia,
Kecia,
Have you tried token board/economy before? What I have done before was using the favorite image/cartoon character/movie..etc. and make it into a puzzle and a token board. On the laminate sheet will be a whole picture and the bottom will have the usual "I am working for ______". The same picture will be cut into 4/6/8/x amount of pieces as "puzzle" pieces to use as token. The goal is the child completing the "puzzle" and earning token the same time. Children loved this. It was just more than a token economy; it was a game to them!
BTW costco sells laminator machine for 20 dollars and come with laminated sheets as well =)
See if this works with him.
-KN
actually, working on one now,
actually, working on one now, he had one at school and it worked well, i dont want to overwhelm him with my list of must do's, so we will chose things like keeping room clean, putting away toys, and spending time doing summer school work and will be rewarded for doing it..
working full time and having time to actually parent takes a MIRICLE!
Hi Kecia,
Hi Kecia,
Lala is 5 years old. She was diagnosed with Autistic Spectrum Disorder when she was 3 by a neurologist and diagnosed with Autism when she was 4 by a psychologist. We started getting Lala speech therapy through our insurance before she was in the school system. Prior to starting, when we would go to family function she would stick to me like velcro. She would never talk the entire time we were at the family function. Once we got in the car she would talk. After starting speech therapy she would talk after being there for an hour or so (progress). She started the Pre-school Special Day Class at four. She received two half hour sessions of Speech Therapy and one half hour of Occupational Therapy a week. My husband and I continued to give her additional Speech through our insurance. Now that the school year is over she can spell her first name, say excuse me when she wants to talk, great us when we get home, is better at categorizing, and can trace so much better. Lala also gets 6 hours a week of ABA therapy. According to her teachers, Lala's behavior at school is fine. It is at home that she shows her beautiful true colors. We started therapy last October and her tantrums have decreased, she can transition much better (visual schedule and a timer), and she is better at taking turns.
Lala's IEP was in May and I think it went well. She was promoted to Kinder. She will be in a Special Day Class at first. When the teacher feels Lala is ready, Lala will be placed in a Kinder class for an hour each day, etc. I will be on a daily contact with that teacher. I just read a couple of articles, "Is Your District Breaking Special Education Law" [California Educator/May 2012] and "Inclusion, Is It Working?" [L.A. Parent/April 2012]. Both discuss how some districts are placing special needs students in regular classrooms to save money. For the next 13 years I am going to make sure Lala gets the support she needs to succeed.
Lala responds well to rewards. However, the reward has to change weekly. When we were working on potty training, she would get one nail polished after she went. After a week, she could care less about getting her nail polished. Since Lala likes to touch different types of textures, I had bought some pencil holders (all different types, textures, and colors). That worked for a month because I would change the pencil holders. Lately her rewards are doing her favorite activities (bubbles, play-doh, using makers, or painting).
Take care,
Lalasmom
Hello Lalasmom,
Hello Lalasmom,
I have been following your blog and it is so inspirational. You always seem so positive and look for the "brighter side", which is just perfect. It seems like you love the school your child is at as well. Other parents I know have a love-hate relationship with school.
-KN
Hi again LaLasMom,
Hi again LaLasMom,
I find it intresting, you were able to get a diagnosis at 3 years of age for LaLa. The battles i have had with two different Neurologist, psychologist, psychiatrist, his pediatrican. at 4 Donovan was enrolled in a Catholic pre kindergarden class, that lasted two weeks, they could not handle his hyper active behaviors, that was the begining of the oddessy.. Up until that time, he was in a daycare center from 8 weeks old, learned colors, shapes, counting to 10, i thought he was progressing normally.. He was colicky and yes he was hyper, but, being a new mom what did i know? Thought all toddlers was constantly active, mildstones of babbling, crawling, walking all seemsed on schedule.
So, once there was stucture put in place, he wasnt having any of it, tantrums, not sleeping well, constantly on the go... The first Neurologist said he should symtoms of ADHAD dut was too young to be sure, or put on medications, I had him enrolled in a special education prekinder class summer school and speech for his studdering, and OT. He was tested for autisum and we was told he wasnt autistic.
to make a long story short, test, drugs, more test, more drugs, until this past May at 8 years old we were finally told he has PDD-NOS, Asbergers, ADHAD. I have read many articles and stories of families learning of their childs disabilities early, because early intravention is very helpful, sometimes i feel four years have gone buy, and even with the services he has recieved could i have got more if he was diagnosed earlier.
I say PUSH the school to GIVE your lovely little lady EVERYTHING SHE DESERVES!!..
Kecia,
Kecia,
I am a Special Education teacher, and WELL trained in SpEd Law. What are the Life Skills that you are concerned with for your child at this time. Life skills are a lot like academic skills....they tend to build on eachother as time progresses. The age appropriate skills should be addressed in the school environment as well as at home. Have you worked with someone who helps to align what you do at home with what is happening at school? So many questions but I'll just take it one at a time. Maybe I can be helpful with some of them.
Deb
Hi Deb,
Hi Deb,
Oh i'm so glad to talk to you, I have navigated the school system with the help of our psychologist, she helps me with what to ask for and what to say to get the services for Donovan, otherwise i probably would be lost on what to say.
Even with the speech, OT, and Psychological services he recieves, i some how feel he needs more. He's in a public district school and even though he has done better this year than in previous years in school. I wonder if a specialized school out of district would be better in helping him become more self aware when he begins to feel overwhelmed. he has crying, and throwning chairs episodes, not as offten this year, possibly due to the medications he's on. last year i spent so much time in school i should have been on salary..
This is the life skills i was talking about. As a Special Ed Teacher, are you trained to handle each specific childs diagnosic needs, Autisim, Retts, or PDD's? Each childs IEP requires something different, This is what my meetings about tomorrow actually, I WANT to know, Now the school has a diagnosis, which took 4 years to get i might add, does this actually changes they way he is taught and given his specials..
Your proffessional opinion WOULD BE GREATLY APPRECIATED..
KECIA
"he has crying, and throwning
"he has crying, and throwning chairs episodes, not as offten this year, possibly due to the medications he's on. last year i spent so much time in school i should have been on salary.. "
I'm 41 and I still have episodes like that. Coping skills have helped a lot- especially knowing when I'm beginning to get that way and going off to experience those emotions in private- but I still have the episodes and near as I can tell there is no way to stop them.
They usually come at the same time as the mirgraines.
And physical pain has a lot to do with it.
Donovan has had abnormal EEG
Donovan has had abnormal EEG's, every last one showed abnormalities, I've been told he may oneday have a siezure. thank god he has not! He doesnt know how to expresss himself, a lot of his tantrums stem from frustration.. but, again you've reminded me i should request another physical..
thanks
Kecia,
Kecia,
Every state handles the classification of a special education teacher a little different. My training was broad to begin with; however, I chose to focus on several different disabilities through the years. I have worked with students diagnosed with learning disabilities all the way to ASD. I have a particular fondness for the ASD, and have chosen to continue my education in that area. I, personally, have a strong background in working with behavioral/emotional disorders. I have quite a background in that area before I went back to school to get my teaching licensure.
You are correct that each disability is dealt with differently. However, with behaviora issues, if you tear apart the remediations they each start with the same basic core principles and are built up to remediate for the particular student. In other words what works for one kiddo with Autism may not work with another. The key, as a teacher, is to be very open minded and to be able to think outside of the box. In addition, remember that works at home may not work in the school environment. I would suggest that a daily log describing behavior and activities be used. It is simple to put together and it travels back and forth from school to home. Each respective adult jots down information that could be a factor in behavior. Open and complete communication is key! Do they use social stories with Donnie to help him learn appropriate ways to communicate his frustrations?
As for your concerns regarding having special education students placed in the regular classroom. It should be happening already. It is a part of IDEA and is called the LRE(least restrictive environment). However, it is also individualized and dependent on each student and their needs. Based on your brief description it sounds like they are moving to a consultive model of special education. Basically, those who can move out of a self-contained classroom are moved out to the greatest extent possible. This may just for PE or other elective type classes. There are so many factors that could be included in this that it is really just a guess on my part.
On a side note, I just read an article that listed the top states(most desirable to live in) if you have a child with Autism. You may be surprised to hear, but NY was number 1. That leads me to believe that there are many resources for you to tap into, but you may have to go outside your local area to begin the search and then with their assistance fine tune back to your region.
Deb
Hi Deb,
Hi Deb,
I think that has been that burning concern for me with donovans teacher, she is special ed trained.. but, had spent the last several years with older students, this certainly was, what i would call a teachers shock, to be placed with young children who had behavior issues.
so, i felt she wasnt thinking out the box, at times it was a battle of wills with her and i. i had some great ideas as to how to improve donovans self esteem, with reading.. like having him read a book he knows in front of his class.. i think as a teacher, and i do know there are state guidelines but you must inspire kids to learn.. if its boring or you dont know what drives each student.. it's a battle, and no one wins..
i know it must be exhausting for a special ed teacher.. but, i'm sure even you've experienced these very special kids want to learn.. and can.. so moving to an inclusive enviorment wont be so overwhelming..
She did her best, but she i think felt i was a little pushy.. or a perfectionist.. which i am. it baffled me, thought wanting involved parents was a dream for a teacher.
makes me want to get into college at 44...and become a teacher.. lol
Hi Everyone,
Hi Everyone,
I heard on the news today My State (NY) is now considering adding Special Ed Students to General Ed classrooms, and have the teachers trained (how long, dont know) in helping special ed students, I guess this is a cost saver for the state.
I'm not sure I agree with this new policy for so many reasons. My first concern is the safety of our children, we all know kids can be cruel. secondly, classrooms in the state of NY are already over crowded, how much attention can be given to our kids, some children are distracted easily, i know my son is, or sound sensitive, I fear this would be overwhelming to everyone.
I know many eventually want our kids in an inclusive classroom setting, but, not before they are ready, and diffently not to save money!
Oh no! This is horrible. I
Oh no! This is horrible. I would be very concern as well. I hope this will not pass and not come true.
I think what they are trying to propose is that higher functioning kids will be in regular ed classroom. However, you are right, it should be when the child is ready not push them into it.
-KN
Hi everyone,
Hi everyone,
Had my meeting today with the school psychologist, principle, and remedial reading teacher. My biggest concern, has always been is Donovan getting the support and serices he needs and deserves, It has been a hard journey from 4 years old till now. Persistence does pay off. I finally think WE are all on the same page.( i think ) I nicely requested his shadow remains with him next september, they have a good understanding and because the concern was MOSTLY FOCUSED on his behavior these last two years, Now, that is somewhat handled with giving him choices, and rewards, I think its time to actually FOCUS on academics..
He will still get remedial reading and I WILL BE, meeting everyone in september to again address things i want to see improve. Maybe, I'm living in fantasy land, BUT, i still BELIEVE Donnie, will overcome this, and be as productive as any General Ed student, IT JUST MAY TAKE HIM LONGER TO GET THERE!!
KECIA
He can get there, it just may
He can get there, it just may take him a bit longer than most. By a bit- the actors and director in Wretches and Jabberers didn't make their movie until they were in their 40s.
http://www.wretchesandjabberers.org/
WISHING ALL YOU WONDERFUL
WISHING ALL YOU WONDERFUL DADS A VERY HAPPY FATHERS DAY !!!!!!
hello everyone,
hello everyone,
i do hope the celebration of FATHERS DAY was a good one for all.
ive been thinking today about medications, what is everyones thoughts? Are you for or against? How much do we really know about the medications our children are currently on? Has anyone tried NATURAL HOLISTIC OR GLUTIEN FREE and if so what is the positive or negitives youve experienced.
my son, is on three medications, Methilyn, risperdone, zoloft. as much as i read up on these medications i still dont know the long term affects, at this point i'm not sure the doctors or pharmacutical companys know, but push..i'm considering a Glutien free diet, hoping the results will be as positive as the studies ive read.
the meds help but as they say its not the magic pill.. your thoughts WELCOMED.
I have no experience with
I have no experience with either as far as diets. I would encourage you to make sure that the research studies regarding any miracle cure or high promise outcome are from journals that do not have a stake in it one way or the other. In other words, it is fairly easy to twist outcomes to work the way you want them to... Although, I know of many people who have gone Gluten free just because and say they feel better. Just keep on doing what you are doing by supporting your child. AND make sure you make time for you as well.
Deb