Grandson diagnosed with autism where do we go from here?

Question

Blake was 2 in dec is not talking yet just makes weird noises and flaps his hands. He is being seen by early learning intervention they taught him some words in sign language.Now that he has been diagnosed by doctor but is waiting to be classified.Waiting for the developmental pediatrician which may be years here in New Jersey Burlington County area.In the mean time we want to get him all the help we can and some support for the rest of the family.We don't know what we are dealing with and the more we can find out we can better handle him . He is a full time job and you need the patience of a saint. We love him to death and there must be some kind of help out there for us.Need some direction,answers and especially prayers. Anyone with information that might help us to help him please reply I will read every word. Thanks for your time>>>>>>>>>Very sad grammy

Answer 1

You could try contacting places like the Shriners Childrens Hospitals to see if they can assist with a rapid evaluation . The sooner that interventions begin the better the outcome may be .

There are some links below you might look at and contact.

Answer 2

i felt your sincerity to your grandchld, but what can i suugest is to look for another developmental pediatrician, don't wait for them to look for blake, find someone else even though you need to bring him to another county just to have a special pediatrician that can treat and take care of him as soon as possible. good luck and god bless all of you...everything has its own purpose..

Answer 3

get him an extensive Occupational therapy and speech evaluation. There are normally play groups out there, take him to those, he needs to be socialized *learn social skills*.  Look online, im sure there is a autism society that may have support groups or other things going. They can also help you to find other professionals.  

Keep up with teaching him sign, also speek to him alot. Don't "cripple" him. This is a huge mistake many over protective parents do.

Answer 4

I have a son who is almost 5 now. We thought something was a little different in his developement early on, and was referred to a special ed. toddler program in my area. Then we were linked up with a local non-profit group here in my area, who helped us get signed up for Social Security Disability. The money really helps me afford to introduce new things with him. The non-profit is called Redwood Coast Regional Center. They take care of lots of stuff. They took care of the payment for the Dr who was able to diagnose him with autism spectrum disorder. Without their help, to get the diagnosis ourselves, would have cost about $2,000 per hour!!! They also pay for behavioural therapists, etc. I live in Northern California, there are a few offices for the Regional Center in my county. The phone # for the office in my town is (707)-964-6387. They probably can't help you out directly, but may be able to steer you in the right direction, and also know of some places to start in your area. Getting a diagnosis early helps a lot, so that you can try to work with the child as much as possible before school starts. Another place to check would be with your local school district. Talk to people in the special ed dept in the grammar and elementary schools, as they will probably be more familiar with the programs that kids come from when they start school. Or go to the district office. Also talk to the early learning intervention people who taught him some sign, they should know of other programs and people that can help out, that sounds similar to the toddler program my son was in. I hope you are able to find some programs and help for him, and what patience you have learned from being with him, you will have to learn even more in finding him help for him. Also check with social services, that's something they can maybe help with too. Maybe not directly, but with referrals. Getting him diagnosed is so important, because then he will most likely qualify for SSI, and then that will pay for any specailized care, program, you name it. So keep plugging away at that, it has helped me more than I can describe. Just have patience, I think that God gave me my son to teach me to be patient, a virtue I never had before. Ironically, my son's name is Matthew, which I chose because it means "God's gift" , and he is just that, a gift.

Answer 5

Do an internet search and ask the special ed department at the schools for information about parent support groups for children with autism.  Talking to other parents who are struggling with the same things is going to be most beneficial to you.  They can advise you of the Dr.'s who are "autism friendly" and find parent advocates for you and the like.  This organization is in Michigan, but I would guess they could help steer you in the right direction.  www.thegraycenter.org

www.autism-society.org

Look into the early intervention programs in the area and what options are available.  If he responds well to music, look into hiring a music therapist to work with him.  The American Music Therapy Assn. will help you find one in your area.  www.musictherapy.org  You can also decide whether you can afford to find an independent speech therapist and/or OT to help with the sensory and communication issues.

Answer 6

Where to go from here:

#1 contact the following organization:

Programs for Infants and Toddlers with Disabilities: Ages Birth through 2

Terry Harrison, Part C Coordinator

Department of Health and Senior Services

Division of Family Health Services

Early Intervention System

50 E. State Street

P. O. Box 364

Trenton, NJ 08625-0364

[phone]; [phone] (Childfind Birth-21)

E-mail: [e-mail]

Web: www.state.nj.us/health/fhs/eis/index.sht...

#2 Join a local support group - the advice of parents in your area on the services available will be invaluable.

#3 don't just wait on a developmental ped, visit a genetic counselor, rule in or out conditions that are often misdiagnosed as autism, such as fragile X or angelman syndrome.

Answer 7

I don't have a son/grandson w/ autism but I can give you the point of view of a Speech Therapist.

The best thing to do is introduce some functional signs to him and whomever he comes into contact with (brothers, sisters, autns, uncles, mom, dad, etc.). Go to the library or bookstore and buy a sign language dictionary ... then find these words: eat, drink, bathroom, mom, dad. Learn those 5 signs and teach them to him. (also continue with the signs that the early intervention program is teaching - make sure both of you are signing the same way.)

I would copy the signing pictures from the dictionary just so when he gets to elementary school, they'll know the signs as well. Keep teaching him more signs until you feel he has enough to communicate what he wants/needs. Other functional signs could be grandmother, grandfather, wait, more, want, stop, help, bed/tired, candy, car, go, slow, etc. whatever pertains to him ... if he likes puzzles, teach him puzzle so he can request it.

I have noticed with austistic individuals, they strive on schedules. So whenever he needs to go somewhere, tell him in advance and give him ample warning. Just because he can't verbally tell you anything, he can still listen and understand.

Answer 8

First, keep on loving him.  Autistic kids show you a part of humanity that has a real beauty to it.  There will be trying times, and the dreams you've had for him will change, but there's a lot that you'll be able to do for each other.

From a clinical perspective, focus on getting as much early intervention as possible.  You didn't mention if he's seeing a speech-language pathologist, but that should be priority number one.  Communication is the greatest deficit autistic kids have.  It helps that he's almost three and will be eligible for school district services soon, but every little bit he gets now will pay off a thousandfold.

Depending on where you live, there might be special programs available.  In my town there's a place called The Guild School where autistic, downs, and other kids can get intensive support in OT, PT, speech, etc.

I have a special needs child of my own (18 months, congenital cytomegalovirus).  You're about to start a life-changing adventure, and I wish you love as you go.

Answer 9

Hi, I hope I may be helpful to you..I know what you are going through, my youngest son was diagnosed with autism last July, about a month after he turned 3.

Look into a local Autism Society Chapter, they are ran by parents and professionals and can be a great place to find out about local resources, it is also a great place for support for the whole family. If you go to the link I left below, it is to the Autsim Society of America (ASA), there you can read tons of info about autism including different types of treatments  from therapies to biomediacl, etc; you can find a local chapter... I found the site to be very helpful to me.

Look into a local CARD center (Center for Autism and Relkated Diseases) (check local universities). If the parent/guardian enters Blake into their database and the parent attends an orientation, they have superb services to offer. They will come to his home and work with anyone within the family on techniques including working with Blake. When he attends school , they will go to the school as well and work with anyone (teachers, assisiatants, classmates, etc) as well.

They also offer some great classes...they have 2 behaviorial classes ..in the 1st class they will cover the art of increasing behaviors you want to increase, such as following directions, self-help and independence skills, using principles of ABA.  The concepts of shaping, differential reinforcement, stimulus control and reinforcer assessment will becovered...in the 2nd behaviorial class they will cover what to do when you have a problem behavior and how to look at problem behaviors from a functional, behavioral perspective using principles of ABA.  The concepts of functional assessment and strategies for reducing and replacing behavior will be discussed.

They also have a potty primer class: Participants will receive an overview of toilet training for young children with autism spectrum disorder.  Prerequisites will be covered

along with readiness signs, data collection and research proven techniques.

(the info for the classes is taken from an email that I get from our local CARD center)

They also offer classes about IEP's (when he becomes 3)/  IFSP(under 3) ( Individual Education Plan/Individual Family Service Plan) ; IDEA/FAPE (Individuals with Disabilities Education Act/Free Appropiate Public Education); when he gets older tehy have adult transition classes. These are only a few of the different classes they offer..Whether they come to your home, his school, or you attend classes, the services are free. Once in a while they will have a special class that may have a fee. They can also provide you with other resources in your area.

Also check into the helpful resources link I left below, they have links to sites such as the Autism Education Network (parent support organization that provides information and training about best practices in autism treatment.); Wrightslaw (provide parents, advocates, educators, and attorneys with accurate, up-to-date information about special education law and advocacy so they can be effective catalysts.); Yellow Pages for Kids with Disabilities (listings for educational consultants, advocates, advisors, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, and attorneys.);  Picture Exchange Card System - PECS;  

Online Educational for autsim (Games, Flashcards, Printables, etc)...plus other helpful links.

Check with Blake's insurance and see what they offer for speech language therapy(SLT), occupational therapy(OT), and perhaps behaviorial counseling. After my son was diagnosed we had him get a speech/language evaluation and found that due to his autism he has receptive & expressive language disorder and oral aversion (feeding issues..textures, etc) He now attends SLT 3 times a week (30 mins per session).. in which he also receives feeding therapy, oral motor therapy, augmentative/alternative communication (PECS & sign language)..he is waiting to be evaluated for OT. He also has a  behaviorial psychologist who comes once a week to our home to work with him and the rest of our family.

It's not a quick process, he waited almost 2 months for his  SLT evaulation and almost another 2 to begin therapy..he's been waiting since mid Oct for OT evaluation.

Check with the local school board, they should be able to provide you with services in your area as well, look into getting him evaluated for ESE Pre-K, that way he can attend pre-school at the age of 3 instead of 4(in our school district, check with yours for ages), he can be eligible to receive SLT and OT as well as part of his school day.

Also look into applying for SSI through your local social security center, since he has autism which is a life long disability he is eligible, but depends on parents income and other info that is provided,..the more information they can provide about his autism..speech/language, etc they more likely he'll be approved...if he's denied..try again....most people get denied on their first application.

Get copies of all of his evaluations/diagnosis, they can be helful in getting services for him such as ESE pre-k, SLT  & OT,  SSI etc. Keep documentation of anything you do in regards of his autism especially any services you are requesting for or for any he already receives.

Most children with autism like schedules, they like routines, and  most learn best by visual. Another link I'm going to leave is an exerpt from a book titled Ten Things Every Child With Austim Wishes You Knew by Ellen Notbohm, it gets you a prespective from their point of view, it can be very helpful to know.

Please keep in mind, that no matter how much info you read about autism itself, treatments, etc, not every child is the same..you can have 2 children with the same characteristics of autism but the same techniques, treatments, etc may work for one but not the other..they are truly individuals and need therapies, treaments, etc to meet their specific needs. There is no cure for autism, no matter what someone may tell you, but with treatments, therapies etc, many of his characteristics can disappear...kinda like diabetes to a point, you can prevent having seizures by taking insulin and may never have a seizure but that doesn't mean the diabetes is now gone.. it's still  there, same with autism you can make certain charateristics disappear but the autism will still be there.

Another thing that is important, just because he has autism does not mean he won't lead a normal life..you'll be surprised at what he does as he ages..he'll make you see things like you never seen them before...he'll surprise you in ways that you never imagined and teach you things you thought you'd never know. His autism is only going to make him that much more special.

Wish you the best and please feel free to contact me through my profile if I can be of more help.

Answer 10

Please - right away contact the school district where your grandchild resides.  The school can do an evaluation and if the schools evaluation finds a Developmental Delay (which basically means he is not doing what others who are 2 are doing) begin to provide services some in home some classes. Early intervention is VERY important.  IN addition the family will get the kind of support and information that will help everyone work through it.

Here is one place to start

http://www.autismspeaks.org/

Answer 11

Hey read up on what Jenny McCarthy did for his autistic son> She wouldn't accept  it and he overcame it.