Three year old just diagnosed

iVillage Member
Registered: 05-27-2008
Three year old just diagnosed
7
Tue, 05-27-2008 - 9:58am
My name is Cari and my three year old son was just diagnosed with PDD-NOS. We went through a developmental specialist and now we have to go through six additional evaluations with the school district so that he can get help. What upsets me about this the most is when he was a year, then 18 months then 2 I talked to the doctor (set of doctors he had when my husband was in the Army) and they kept insisting it was "Middle Child Syndrome". He could have already have been recieving the therapy he needed instead of just getting it. My husband got out of the Army in the end of October and my sons new doctor immediatly sent him to a specialist (set up and appointment but it takes months to get in) when I told him my concerns and his symptoms. We have to have hearing and vision tests done through the normal doctor and the developmental specialist said the normal doctor can monitor it as long as nothing else becomes obvious. This is just the initial diagnosis until he starts seeing the therapist and goes to school. The developmental specialist said that sometimes other symptoms are then noted so he is going to diagnose it as this for now and we are going to keep our minds and eyes open for other things. I wanted to join this group for support, help and advice. Also to give the same things once I am more versed in what is going on with my own son. I am 26, I have a 6 year old daughter, and a 2 year old son also. Thank you
iVillage Member
Registered: 05-27-2008
Fri, 05-30-2008 - 9:23am
No mixing, or if you did I totally understand. Thank you for the insights. I hope he will participate in the evaluations. My biggest worry is that he will try to hinder them.
iVillage Member
Registered: 01-07-2008
Thu, 05-29-2008 - 8:57am

Welcome to the board Cari. I can offer my own experience to echo the PP's - not on the diagnosis and testing because I'm in the UK and the system is completely different here - but on getting DH on board. It was a lot easier for my DH to get a handle on it after he'd come to a few of the tests and appointments himself, rather than having the information relayed through me. And it was easier on me too, because my own feelings and concerns were not necessarily the same as his.


The truly best part of getting the diagnosis was the part when all the professionals, separately, told us that it was not our 'fault' - that nothing we did, or didn't do, had made Euan this way. It wasn't our parenting, or our genes, or anything environmental that we could have known or controlled for. That was a huge weight off both our shoulders and meant we could work together on helping Euan, instead of blaming ourselves and each other (which we sort of had been doing, subconciously, I think, up until that point).


The other thing I would say is that do not beat yourself up over what has or hasn't happened in the past. Concentrate on now and the future. Early intervention is important, but it's not the be-all and end-all, it doesn't cure anything. The important thing is to get the help and support DS and you need now, and for that help and support to adapt to your changing needs, not to worry about what DS has missed out on.


The label, or diagnosis, is a helpful thing, because it gives you and the professionals some understanding of your DS and how to help him, and, as you will find out, it can be the way to 'unlock' the system and get the help and support you need. *Not* using the label or diagnosis does not make it go away - think of it like being short-sighted. Not wearing your glasses doesn't make you any less short-sighted, but it means you can 'hide' your short-sightedness if you want to. But isn't it better to be able to see than worry about the stigma of wearing glasses? The glasses don't cure your eyes, but they make it possible for you to see things. There are no autism glasses or cures, but there are tools and therapies that can help kids and adults overcome some aspects of it and function better - but to use them effectively, you need to understand what's wrong, otherwise it would be like me wearing my partners glasses and then wondering why I keep crashing the car...:-)


sorry, mixing my metaphors probably.


Kirsty, mum to Euan (9, Aspergers) Rohan (5, NT) and Maeve (2, NT)


"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 06-25-2003
Wed, 05-28-2008 - 12:14pm

Hi Cari and welcome to the board,

Reading your post was like stepping back in time for me, because I went through a lot of the same concerns you had, and I was poo-pooed as well, until shortly before my son's 3rd birthday. He is not pushing 10 and doing great, so early intervention and therapies really can help a lot. You are doing the right thing to pursue this and find help for your son. I know it is a difficult process to go through, but he will benefit.

My husband had a very hard time with the diagnosis, and indeed I think he felt that a lot of the problems was me "seeing things that were not there". How I resolved this was to get him involved with the evaluations and other meetings; to meet with the doctors, teachers, therapists, social workers and everyone else involved. To ask his own questions and hear the answers directly from the professionals and not from me (even though for the most part, I would have given the exact same answers). Like Betsy's husband, it took awhile for him to come around, but every April he make Autism awareness ribbons and hands them out at work.

I hope this helps. Please feel free to join us here, pull up a comfy chair, post whatever questions you need, and chime in on any topic.
-Paula

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-27-2008
Wed, 05-28-2008 - 10:01am
Thank you so much for all the information. They did send a booklet full of the laws and stuff. It explained how they can't do any eval or re eval without my consent, can't put him in therapy without my consent, stuff like that. I have alot of reading to do. My husbands comment when we were on the way to the specialists was don't get my son put in an institution or special school and don't get him diagnosed with autism. Like he thought I was making it up and was going to lie and tell the doctor all this stuff that wasn't really going on. I explained to him that what the parents say means very little, they actually talk to and do things with the child to diagnose them.
Avatar for betz67
iVillage Member
Registered: 03-26-2003
Wed, 05-28-2008 - 8:36am

Hi, welcome!

You should have received a copy of your rights when you contacted the school district and they began the evaluation process. here is a link to the rights http://idea.ed.gov/download/modelform3_Procedural_Safeguards_Notice.pdf

Ok, initially the school district will take the medical diagnosis (Dx) and put it aside and do their own tests. Some school districts are good about taking the Dr's evals seriously up front and others' will not even look at the outside evals until they've done their own. The SD (school district) will decide which specific educational needs your child has. You have rights as the parent and part of the team to help them decide what the educational needs are. Some children w/ ASD (autism spectrum disorders) qualify for and IEP (individual education plan) others who are not so severely affected in the education setting may qualify for a 504 plan.(my oldest son dx ADD-nos, was originally on a 504 plan for this and his other health issues-- he got to the point in middle school where he could not hold it together organizationally or socially. He was then moved over to the IEP and gets more support services with that plan).

The IEP falls under IDEA rights. here is a link http://www.autism-society.org/site/PageServer?pagename=life_edu_idea

http://idea.ed.gov/ (this site has some specific articles relating to children in private schools)

The Family Educational Rights and Privacy Act defines how school districts manage you and your child's information concerning public schools. FERPA link is here http://www.ed.gov/policy/gen/guid/fpco/ferpa/index.html

This is a link to information on the "section 504 of the Americans with Disabilities act" and how it pertains to children in elementary school and secondary schools.
http://www.ed.gov/about/offices/list/ocr/docs/placpub.html

That's a lot of information to sift through. It took me years to even gain a partial understanding of my rights (and 3 children on IEPs)and how the system works. You have the right to bring an advocate with you to the meetings. This might be someone who has been there and done that or someone who is an expert. Our local Autism society has parent advocates that can help look through the evaluations, talk with you and even speak for you and your child at the meetings. They will give you a person on your side when sometimes the school district professional educators seem to have their own agenda and it isn't necessarily in your child's best interest.

Our oldest is Dx w/ ADD-nos, our middle son is Dx w/ autistm spectrum disorder, and our 2nd DD is Dx w/ dyslexia. We have 2 other children that are not on IEPs and are a little more normal in development. My husband had a very difficult time w/ the original Dx for our ASD son. We knew something was not quite normal with our son from day 1, but getting that original evaluation from the school psychologist and then the formal Dx later was really difficult for him. It was upsetting for me as well, but I'm a person of action so my reaction to the Dx was to do something to fix it. His was to wonder why, why his son. It took a couple of years for him to really support me and all the educational efforts, but now he's probably a better advocate for our son than I am.

Betsy

iVillage Member
Registered: 05-27-2008
Tue, 05-27-2008 - 7:56pm
Thank you, my school district is pretty good. Although he will be going to a private school which will make it a tad more difficult for me, but easier for him I think. He like small groups. Does not like to be around alot of people and my daughter goes there as well. There are 40 kids total Pre-K through 12 this year. They sent me the paper work already to get his evals done, even though I haven't gotten the written diagnosis in the mail like they are sending me. He will be going for Psych eval, speach, OT, PT, social history and special ed. I am in the dark as to what will go on during those though. Which has me anxious, lol. My husband is supportive in a non-supportive way, lol. What man wants to hear that his son has this? He wasn't sure about the orriginal eval but I think when he sees the changes and how much it helps Jeffrey to have help he will feel better.
iVillage Member
Registered: 03-27-2003
Tue, 05-27-2008 - 6:21pm

Hi and welcome.