New to group just looking for some help

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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New to group just looking for some help

Postby mom2jace » Sat May 02, 2015 3:20 pm

Hi my name is Nicole. Recently my three year old son was diagnosed with asd. I am a mother of six Jace being right smack in the middle. We noticed Jace acted different in comparison to my other kids around 18 months. It took me from then until now to get someone to listen and not tell me it was " terrible twos."
He didn't use his imagination when playing, he would physically hurt himself throwing "fits" because of something as small as a tag on his shirt or the doctor checking his ears. Finally he was diagnosed and I felt relieved to finally have some answers. The doctor and a team of specialist sat down with us and made a plan. However the plan that they have sat never went anywhere because his school and the only local therapist are refusing him services stating that he has none of the reg flags for ASD and are constantly telling me he is a typical three year old. The doctor says he is will benefit from early prevention and things like aba therapy but how can he if they deny him?? The special service coordinator actually told me " maybe he needs outside help because it sounds like he has problems with you" this stung like a knife. I am a good mother I just need help :'(

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Re: New to group just looking for some help

Postby riika » Sat May 23, 2015 2:24 pm


Sorry to hear that you and your son are not getting any help. I hope that changes soon. I am sorry that I can not help in any way but only by listening.

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Re: New to group just looking for some help

Postby JustinsDad » Mon May 25, 2015 7:24 pm

I don't know where you are, but where I live such a denial is nearly criminal. The school is blatantly wrong if you got a formal diagnosis and have a treatment plan. Get an advocate, give the school a copy of the evaluation that spells out the diagnosis and demand a meeting to set up an IEP (Individualized Educational Plan.)

Furthermore, get a different counselor. You need somebody who can be a burr in the hindquarters of those who would deny you psychological services, etc. when should have been inherently prescribed as part of the evaluation that also spelled out the diagnosis. You may need respite if you feel your child is giving you trouble because of behaviors associated with his diagnosis but if treatment was prescribed, then that needs to be in the treatment plan AND the IEP with the school.

Think of it this way: do you think the school would accept such an excuse from you?

Father to Justin, age 12,'dx of ASD and ID and Joseph, age 9', dx of ADHD

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Re: New to group just looking for some help

Postby Santosg » Tue May 26, 2015 12:41 am

Provided that you have a formal diagnosis, you've got everything you need to get the required services. Have the diagnosis faxed to the school. Also, as already suggested, get an advocate. However, and I feel this is the most crucial aspect, you have to know what you want for your son and be dogged in your determination to get it. Don't, don't be afraid to threaten a lawsuit, bring up a formal complaint, or ask for someone to either be removed from service or fired. If you have a formal diagnosis, there is absolutely no way these individuals can deny your son anything.

Have a follow up meeting. Make your demands specific and concrete. Ask for them to write up their denial at that meeting, as you're going to be taking it to your scheduled appointment with a disability lawyer. Make sure to get their names.

Having said all that, based on your brief description, I think that your son must be very high functioning. Your next step in helping your son does not have to simply follow the school district plans or resources. Your school might have some ABA resources, but they usually only have it once in a while--once or twice a week. My son is going to turn 3 in the fall. He's not really verbal and would not be classified as high functioning. I don't, though, feel that the best location is going to be to put him in a class with a group of other autistic kids. Ask what your major concerns are for your son and what goals you'd like to establish for his growth and development. The school might be the best setting for him but it might not. The quality of these programs very wildly. Sometimes you get a really capable and dedicated teacher. Sometimes you get glorified babysitters that will be pleased to show you finger paintings as the big accomplishment at the end of the year.

Intervention matters, but it has to be quality intervention.

In terms of behavior, behavioral problems do have a familial component. This is not to say that you're the cause of your child's problems. Don't allow someone to question what you know is true about your own son. No one is going to know your child better than you do and it is parents who are the authorities on their children. It is to encourage you to look to ways to really help him overcome his problems. I wish I'd known how to really help structure my son's environment to encourage speech when he was first born, but I expected speech to develop as it had for his siblings. Inevitably, this did not help. I had to really alter the way we interacted with him and it has helped greatly. So, I encourage you to find a better way to manage problem behaviors and try to extinguish them. Behaviors are patterns and patterns can be broken, but they require a good understanding of behavioralism. That's what ABA is such a powerful intervention. Programs, either in school or at home, act as supports for the interactions he'll have at home. You can't depend on them to really treat the issue in any fundamental way.

There are additional things that can sometimes be lumped in with autism but are distinct, such as oppositional defiant disorder. I'm not saying he has this, I'm just saying that autism is a label, just like any other label, and it is most important to focus on the specific issues effecting your child and not just lump what he needs under a general category of autism programs/support. In either case, I think it is definitely a good idea to start doing a biomedical intervention in additional to behavioral therapy. This would include MB-12 shot, etc. You can read more about this on the board.

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Re: New to group just looking for some help

Postby Winnie » Tue May 26, 2015 11:27 am

Unfortunately receiving a medical diagnosis does not make a child eligible for services under IDEA through their school district. This is a common misconception (google medical diagnosis vs educational determination).

On the other hand, a three-year-old does not have to qualify for services under a more specific disability category (like autism). Young children can qualify for services under the broader category of Developmental Delay. The district is not responsible for diagnosing autism or agreeing with his medical diagnosis, just determining eligibility and providing services if determined to be eligible for educational services.

Has the school district evaluated your son? If not, they are not in a position to make statements regarding his development or diagnosis. If the district has not yet evaluated him, the first step would be to refer him (parents can initiate a referral) in writing to the district for evaluation. If you disagree with the evaluation results, you have the legal right to request an independent evaluation at the district’s expense.

As far as the intervention plan written by the outside specialists goes – this is helpful to have but be aware that districts are only legally obligated to consider this information, not follow the recommendations. You will need to be prepared to advocate for the services (type, level, frequency) that are recommended by the independent specialists.

Meanwhile, do everything possible to document what the district tells you and do so in writing as much as possible (like sending the special ed director a letter/email regarding your understanding of their denial of a request, and requesting the clarification/denial in writing).

Whatever you do, DO NOT threaten the district with a law suit – or any other draconian action that you are not prepared to follow through on immediately. This will just leave them rolling their eyes and is almost a flag to them that you don’t understand due process or the law yourself. What rattles the psyche of the district and nudges them to be more agreeable is a parent who is knowledgeable about the law. Legal proceedings are costly, extremely stressful, and hideously time-consuming -- a last resort. The goal is to get what your child needs in the most time-efficient manner, all while (if at all possible) maintaining a decent working relationship with the people educating your son.

The law and your child’s educational rights are yet another learning curve for parents to conquer – but this is a critical (and ongoing) area necessary to advocate for and obtain the services a child needs. Follows is the link to a very user-friendly book to help guide parents through this process (even includes sample letters). IMO, every parent should own this book. Jumping on this curve sooner rather than later is a good idea (that way one is not in the disadvantaged position of trying to sort through this info in an acute situation). This book is a great place to start -- it can be ordered from a number of places (including this link -- click):
Wrightslaw: From Emotions to Advocacy

The Wrightslaw site is probably the most widely-known online source of info in this arena – the site is huge (and searchable for specific topics):

So it seems like what you need to do right now is:
1) Order the book :)
2) Refer your son to the district for a formal evaluation (or if a district eval and eligibility determination have already been completed) disagree with the results and request an independent educational evaluation at the district’s expense. Although you already have an independent – outside -- diagnosis, you will still need to follow these procedures. The district can elect to accept your previous eval in lieu of conducting their own or pay for a new one.
3) Gather all evals, correspondence, and other documentation available up to this point and organize it in a binder. Document everything -- including conversations on the phone and otherwise. If a case ever does proceed up the legal chain, this is critical. And be as professional as possible in your communication with the district -- angry and emotional emails, for instance, can resurface to a parent's disadvantage in the legal arena.
4) And as suggested earlier in the thread, investigate the availability of an advocate. Contact some local disability orgs and ask for leads -- sometimes there are orgs with volunteers available to assist with advocacy.

Good luck – I see your post is from earlier this month – glad riika bumped it so you wound up with some responses!
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