Messages posted by: blessedmom

I was told by my peditrician that he can write a script for pull-ups. They have to be purchased at a major medical supply pharmacy. They can not be purchased anywhere else and that Home Health worker will have to apply for them for you and usually they are only approved for about 1/2 of what you use.Not alot of help. That is if Autism waiver is to help pay for them and of course the severity of needs of the child. You can also turn some portion of the cost in on your taxes as long as you have receipts. You would need to check into this for your state to see if this can apply to you. Hope this helps.

I would like to add that I am a teacher, and that I am a teacher of a child with Autism. I am well aware of how the districts play the game. I am also aware that through years of trial and error as being a parent of a child with autism, what eventually worked and what failed. I simply am trying to enlighten a district who has only had 6 children with Autism Disorders come through in the past 25 years. Being in a rural area, this is not always a easy task. Especially trying to ascertain services that are appropriate for a child no matter if they are disabled or not. I think being stuck in how you where taught in College and have been doing the same for years on end doesnt always work. I believe Teach the Child not the group. Individualized instruction doesn't mean sameness. Thanks

Thank you Suetois for your enlighting question! I had NO idea that we would have to deal with this at 18. I thought since they are found disabled that guardianship is automaticaly the parents. WOW! My son was changed this summer to high-functioning Autism and we did set-up a special needs trust that we can change as he gets older. he is only 5. I will definately be reading to see how to handle this very stressful situation and hope I can take knowledge on how to prepare. Thanks!

The GOOD: "They" seem to alway's want to listen. The BAD: "They" the school want to be the Judge, Jury, Doctor, Teacher, Therapist Etc. at some schools. ALL to say they are the experts when it comes to Autism. We have taught children with Autism before. Big Deal, you haven't taught my son with Autism. Test after test, meeting after meeting takes a toll on any parent. My son was changed from Severe Autism to High Functioning Autism! YEAH! but it was not a easy road for him or me. He put in the Work. I was my son's loudest advocate. It is what it takes to WIN. Be strong, support your child with all your heart and read everything to support your child, data reports, letters from Doctors, test scores, etc. I feel like a cheerleader with the chant: Fight, Fight, Fight! But your child is the Winner.

Dear Suetois,

It look's like you have had more than your share of experience's with the school's. I am just getting started, my child is entering kindergarten this fall. I agree with you on all point's but I have a different role from the inside of the school system. I am doing everything in my power to help these children and still have a job to support my disabled child. Do they the school's personnel alway's listen? Usually, it depend's on whether or not they think they are know it all's. Thank's for the advice and I will continue to document thing's to help my child and other children as well. I have found that most parent's where we live do not know their right's or how to complain and fix a situation. They just sign any IEP the school put's before them and that infurates me.

I was curious to know how many diagnose's have been changed since their child's 1st initial diagnoses? Did they get better or worse? Did the test's fail or what? If anyone would like to answer.

Thanks

Dear EarlyEduTeacher,

How Wonderful to hear. I would like to say that I do not view all Teachers as unwilling to listen. It is refreshing to hear that you really are sincere in wanting to put the child 1st and then the disability. Also, Thanks for passing out books on Autism.

This is part of what make's you a Early Education teacher. You haven't reached the burn-out phase yet and hopefully never will. I take it that you are going to work at a private school which only has children with Autism? If not, you haven't had to be 1 part of a team who has to listen to their Special Ed. Cord. and etc. I encourage you to keep your stance in helping the children but as you gain experience and years of teaching you will find how other's view things. We need more like you and in higher positions to make a difference and help these kids who desperatley need it. Best of luck to you!

Dear Suetois,

I feel the exact same way. Why does it have to be so hard? Well, as I have learned by being one of the Principal's spouse it has to do alot with $$$.

Special Ed. Cord. are only givin a certain budget. According to certain states, Each disabled child gets a little over $10,000 a year as a typical student gets $5,000. This all goes into the Special Ed fund. It is disbursed to pay for programs such as Speech, OT, extra workshop's etc. They will not provide a Aide to any child if you the parent ask. It has to be requested by Dr.'s and Dev. teams, etc. It should list why the child is disabled and how it effects their performance in school. The parent's have to have documented incident's that have happend at school and teacher's comment's about child's work or lack of progress if any, to make your case for your diasbled child. Then the IEP team and school is forced to listen and see your child's side. Document, tape record {giving the school notice 1st}If it is legal in your state IEP meetings, write everything that happen's down, Keep your child's homework that reflects what needs worked on. Make sure it is legal before hand. This is just a suggestion. Wright'sLaw.com has great references to help advocate for children.
Remember, it is better to approach it as a calm, rational parent instead of showing the school's that you get angry. This they the school document's and it is and will be used agains't you and your child. The school is not agains't the child they just need information and proof of the child's diability 1st.

The system need's fixed in certain area's but if you approach everything in a combative way, you will fail. Most of all, the child looses. I have learned to be patient and try everything to convince them of my child's side. Hang in there, I belive God protect's the little children.

I would say the most Stressful and frustrating thing is that certain Teachers who have no clue the life of the child of Autism lives and how the parents live.
Some think that because they teach different children, or have taught certain students with Autism that they are experts! Not ALL children with Autism, Asperg's or PDDNOS or etc. are the same. Certain teacher's think because your child is running around the classroom and quoting movie dialoge clearly re-inacting a Thomas the train movie- that they are merely pretending. It's not stimming or autism they say. The way they act, is meet with it's because they are a only child. The food aversion's, they are just picky eaters and he would eat what I provided or not eat they say.
Is the stimming, not eating, uncontrolled outbursts, boss like behavior or not understanding danger, toileting issues etc. bad? Certain people with blinders on seem worse to me.
I feel so sorry for people who are made to second guess their ability as a loving parent because some teacher's just simply are unwilling to listen. I have provided many book's on Autism to teacher's and it is always meet with a stern look, and a reply of Thank you for the information. I haven't found what work's in this situation yet. Hopefully as I learn the process I can become more helpful.
Never doubt that you are a GREAT parent and children with whatever disability are the true BLESSINGS in all of this and they come 1st no matter what anyone says. We know and live the life we live with Autism. People add stress, along with the battles of Insurance com and etc. Not Autism in my opinion.

Thank you Connie!

I'm sorry I didn't make myself clear. I have prayed everyday for my son and this is answered prayers in everyway. It would be Great. To have known him a year ago and today he seems like a different child. He has worked so very hard and is determined as I and his IEP team to see him gain. I was concerned about that if they make a new IEP or if one is needed and he no longer has these services in place would he start to loose what he has gained? I suppose it is a fear question. I want to be absolutely positive of the IQ and other tests that they match one another and are compariable. Meaning the school's and the Neuro teams. Its my understanding that a huge gap in tests aren't always correct. I still see the stimming behavior's, the lack of being toilet trained, unable to dress himself, the food aversions, and not being able to demonstrate safe behavior at this time. But his Speech, and eye contact and being able to have some recall now is wonderful. I just think that when the school said to me that he doesn't sit in the corner and scream that it is a judgement of Autism and that is not fair to any child. He is blessed that he does not.I pray for the one's who do need extra help. IQ doesn't necessarily have anything to do with Autism.

My autistic 4 year old was diagnosed with Autism and Dev. delays at the age of 3. His Standard Binet5 IQ was 74. CARS was 34 Vineland was 61. My child has been recieving Early intervention, Speech, OT. and school readiness inst. for the past year. He has made great progress. The school just tested him for kindergarten for which one of us works for. Can a child test out and loose the diability diagnosed by the Dr. and Neuro team?

If you could read the NRC Educating Children with Autism. It is a great book also the Out of Sync child is a book that deals with sensory processing issues. Children with Autism are uniquely individual and you will see that when you begin your journey in teaching. What works with one will not for the other and so on. I would recommend keeping a journal of the specific's that you see everyday and how that child react's or doesn't. It will help you in the long run because you can get to know each child.

My son also used to eat a wide varitey of foods at 1 year of age. He liked, oatmeal, mashed potatoes, carrots and etc. and self eliminated these foods over a course of 1 1/2 years. He will no longer eat alot of the foods he once did but I found he will eat Eggo's crunchy style! They have 11 vitamins in them and he also has added strawberry pop-tarts! This came in handy because of Amoxicillin that he would not take medicines at ALL and he was convinced by the pink color it tasted like strawberry pop-tarts. I to have spent many nights worrying about nutrition. My son likes milk but I eliminated it at around 2 years of age because he kept getting ear infections. stopped the milk and hasn't had a ear infection since and he is now 4 1/2. He is "Good" about speech now and I can tell about the behavior being better because 1 mnth ago he wanted choc. milk mixed only with Hershey Syrup (It's a Label thing) and I let him have it because in pre-school all they serve is either juice or milk which he will not drink either of. I was hesistant at first but I thought if he wanted it I would let him have it slowly. He started becoming harder to settle, had meltdown's which he never had before and was generally cranky. His teacher asked if I had done anything different and I said yes, I had been letting him have choc. milk. I stopped the Milk and over 5 weeks got back to himself. It seems Crazy but it is true in my son's case I would not of believed it if I hadn't been charting him. Texture things became more of an issue as he has gotten older. It's as if it comes out of the blue and the next thing you know he trys something similar. It seems to have no rhyme or reason behind the sensory things. Just that you have to be in tune to your childs needs and know they are bothered by it just the same.

Dear Amber123, I know the feeling all to well. You think you are in some state of disbelief and on the other hand you realize that yes, my son does have Autism. I am at the 1 year mark this month and still I have went through all the stages so they call it. 1st shock, 2nd, to disagree, 3rd, to cry and worry for him in his future. 4th to Study and gain as much knowledge as possible and the exceptance. Never give up HOPE! He is "IN" there somewhere you just have to be willing to be tougher than Autism is. It get's easier to navigate all the information once you ask everyone who has been there. Not easier to deal with or accept but just Remember, his Happiness is what is most important and what memories you make together are what he and you will both remember forever. Love heal's just hang-in there. Loving your son will help you despite everything and when he smiles remember that is better than any research there is. If I can help let me know.

It seem's as "Luck" is an understatement when dealing with your child's IEP. My husband is the Ass.Elem. Principal and we are finding out as parents of a child with Autism and Dev. Delay's that you are not always listened to. We reviewed my son's IEP and the school uses the TEACCH only method. We have now learned to make our son's Goal's measurable with the Data collection system as we learned through research to one of the suggested sites you recommended Wright's Law. It has been very helpful. I tend to struggle with pushing a little hard for my pre-school son. The school's stance is he is doing Great! but as a parent you always want more. Thanks for the info and I am going to push for why the committee felt Teacch was better than ABA for my son. There have been only 3 children in our district with Autism. I understand that coming next school year there are almost 20. I tend to advocate for these children and help the parent's how I can. Thank you!