Need help with profoundly autistic child. Can anyone help?

Monica - posted on 09/03/2012

Hello I am a Board certified behavior therapist and clinical director of an amazing company crystal minds new beginning. Crystal Minds New Beginning uses an Integrational approach to therapy. It combines fragments and pieces of Occupational therapy, speech therapy, art therapy, physical therapy and Applied Behavior Analysis (ABA). We also use VB-MAPP, developed by B.F.Skinner, which is a verbal approach to behavior analysis. All of our programs have a verbal component to it whether it is ASL (sign language training), PECS (Picture communication exchange System) and other forms of verbal behaviors, including further development of Tacts, Mands and intra-verbals. We also understand that apart from speech and behavior, academic enhancements help individuals develop healthy self-esteems and prepare them for the later years of their lives therefore we also offer academic enhancements and tutoring programs to get your child on track!

For any questions please visit www.cmnbtherapy.com or email us at info@cmnbtherapy.com

Heather - posted on 09/01/2012

You're welcome!!! :-)

It was no problem bc I just googled some key words w Chicago and the resource centers!!! :-)

Lori - posted on 08/31/2012

Progress can be made, so don't lose hope. All three of my sons are on the spectrum. When my middle son was diagnosed we were told he might not ever talk. He was in therapies- speech, OT, PT- before he was diagnosed and eventually we were able to add ABA a year and a half afterward and it has all made a huge difference for him. We do melatonin for sleep and we used Risperdal for awhile when his aggression was really bad. Three and a half years later, he is verbal, though he would still prefer to scream sometimes, but he can talk and he also is really funny. The GFCF diet did nothing for him. Right now he is doing amazing. We do lots of heavy input, 10 minutes of good physical exercise every hour plus lots of play breaks, too. It really is amazing how much progress he has made. He is still autistic, he always will be, but he can function without needing to resort to aggression. Good luck with your step son. I wish you the best.

Pink - posted on 08/30/2012

I would say rather bad...but you can limit the badness by trying to choose healtier things than nuggets...not much of choice in a gluten free dairy free at mc donalds but when we go i get chips and ketchup, carrots, pianeapple, apple slices...might be best to take him to the park and give him a healthy meal. At least once a week if you think he might be getting junk during the week...

Tiffini - posted on 08/27/2012

I am passing all of this info along to my hubby, he's soaking it up like a sponge! We meet his son for visitation every Saturday @ McDonald's and every week his son has chicken nuggets and fries (dipped in BBQ-sauce--of course) and an juice drink. How bad is it for him to be eating McDonald's every week? Not to mention, we aren't sure how often he's having McDonald's or other unhealthy foods when we're not around...

Pink - posted on 08/25/2012

yes my son loves ketchup too, I often fool him with passata, it's more a color thing rather than taste and passata is healthier

Tiffini - posted on 08/24/2012

Wow! Thanks for the information, Pink. We have already started diluting his juice with water. The difficult thing for now is that we only see him once a week since the custody battle is just really getting started. It's hard when we are doing one thing with him and his mother (and I use that term loosely) is doing something totally different. My hubby and I have discussed the gluten free diet, he is already lactose intolerant (runs in the family-haha) so the dairy isn't a problem. Now, one thing we have discussed is the BBQ sauce and ketchup. He won't eat anything without dipping it in either of the two. Does anyone else have that issue with their kid(s)?

Cherish - posted on 08/23/2012

Tiffini...

My son also thinks it is lovely great fun times to throw things...it is even more enjoyable to him if what he throws is either heavy(and hits you in the head) or breakable!!! lol

Wait until he figures out how much fun it is to break windows with his head...Now to my son he would LOVE to break a window with his head,over throwing things any day:) lol

Pink - posted on 08/23/2012

I did not find a reply for how old he is anyway I'll tell you my story as shortly as I can, my oldest son is 4 (last July) and he was still not potty trained at 3 when we (gratefully with success) started, he was diagnosed with mild autism so not as bad as your situation but after studying nights after nights while breastfeeding the newborn twins (just as a fun note) I found a mother with an autistic child that had done immense progress and could be almost considered normal and she addressed me on a path of a series of all different blood tests, urine test for heavy metals, genetic tests and referred me to the doctor that was curing her son, we started with a gluten free casein free diet (also no fish, no beef, no veal, no sugar, no artificial sweeteners and no junk food as much as possible (we gave in to salted crisps and peanuts as they are not as bad as other things and are ok according to the diet per se). After 2 weeks some improvements and the start of less aggressiveness, less head banging on the floor (it was very rare at this point already but still happening), less throwing things. After a few more months more improvements and a few words introduced, in february he started calling me mummy, finally and making sense of things, pointing, saying goodbye and other things, in April we finally met the doctor with the results of all the tests and based on those and his age etc. he gave us supplements and homeopathic remedies and natural chelation medicine such as zinc and magnesium to flush away all the mercury we had found he had (A LOT) and the other heavy metals present in his body. He just kept improving and improving, now it's not been a full year since the beginning of the diet yet and I consider him almost normal, he says sentences and has tantrums that are almost normal, says no, he is cheeky and stubborn, a whole different boy, loving with his baby brothers, sometimes jealous as normal and they fight over toys and they just do brothers' stuff...

I hope that if you decide to test him and you find he has heavy metals too you can cure him and see massive improvements like we did, also if you did not do it yet stick him on this type of diet along with the test for HLA (genetic), if you find he has a gene (DQB1:03;05) then you will be sure he can never eat gluten and casein(dairy and relatives) as his body just makes them become drugs (opioids) therefore making him hyper and high (laughing maniacally is one of the things my son used to do too), I'm here for any info. Just message me and good luck I hope all the best for him will be done =)

Tiffini - posted on 08/20/2012

Thanks, Tricia. He is lactose intolerant so no milk for him but we have been diluting his juice drinks and giving him more water. I haven't noticed much change in his behavior though. He is still VERY hyper-active. Lately I've noticed that he's really into throwing things, it's almost like a game to him. He'll throw something and laugh hysterically...

Tricia - posted on 08/19/2012

Join online groups such as Autismspeaks.com, see if there is a county program called a "Regional Center" that offers programs - try a dairy & gluten free diet - milk to some autistic children's brains is like CRACK would be to our brain. I tried it with MY son & he got a LOT better - read Jenny McCarthys book - has a lot of ideas & directions to try.

Tiffini - posted on 08/14/2012

Heather!!! OMG, thank you so much for all of this info. When I get home this evening my hubby and I are going to sit down and go over all of the links that you provided. I really appreciate the time you've taken to check this information. There are so many links and sites and dot.orgs when it comes to this kind of thing I just never know where to begin! Sorry for the late response, too :-)

Heather - posted on 08/09/2012

CCD is community center board.
Silly me... I usually go by the name of one of our boards here.

Heather - posted on 08/09/2012

Oak Park, Illinois has a center that I clicked on and it has links on it that might be useful to you.

Links & Resources

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Illinois Early Intervention Links & Resources



Illinois Department of Human Services
www.dhs.state.il.us/ei



Music Together
www.musictogether.com



Training Resources:

For Early Intervention:
www.illinoiseitraining.org



For Parents:
www.thecenterweb.org/starnet/index.html



Developmental Disabilities Links & Resources

American Association of Intellectual and Developmental Disabilities
www.aaidd.org



Commission on Accreditation of Rehabilitation Facilities (CARF)
www.carf.org



Equip for Equality
www.equipforequality.org



Illinois Council on Developmental Disabilities
www.state.il.us/agency/icdd/



Illinois Department of Human Services
www.dhs.state.il.us/mhdd/dd/



Illinois Direct Support Professional Workforce Initiative
www.rtc.umn.edu/ildspworkforce/index.asp



Network of Care
www.CMHB.NETWORKOFCARE.ORG



The Arc of Illinois
www.thearcofil.org





UIC Department of Disability and Human Development
www.ahs.uic.edu/dhd/

Heather - posted on 08/09/2012

I googled
develomental disabilities community board chigago illinois
and found many websites you could look at for your step-son in order to get connected w the services that he needs.
There are regional resource boards that tend to go by different names depending on where you are located.
Some of them are developmental disabiliy boards like MR/DD like in OH and then there are the CCB's, and I should remember what that stands for, but offhand I have a screaming boy and cannot remember (but the know the names of the local ones here).

This website looks like it will have one in your area and you can also search under
develomental disabilities community board chigago illinois

www.disabilityresources.org/ILLINOIS.html

Heather - posted on 08/09/2012

Also, if the child is not receiving the much needed services needed and the parent is hitting the child, this is not helping the child at all.
Children w Autism are not going to respond to being hit as some form of punishment for behavioral issues that the child cannot even control.
My son cannot control his behavioral outbursts. He doesn't even understand how to control them. He gets sad after, but he has these moments where there is no control.
I have to prevent him from hurting himself and others in the process.
Since I have worked w behavior therapists, more specifically a BCBA (board certified behavior analyst), I have tried to learn some techniques to help redirect my son to what he is working on and to try to prevent, decrease behavioral issues.
And, yes, he does have behavioral issues.
That is why ABA and speech therapy and other services and treatments and therapies are important.
My son needs to have his communication issues addressed as that can help w some of the behaviors.
Also, the change in environment can be a huge factor as well.
When I was married to my 1st husband, we lived in OH and the environment there was more chaotic around my ex husband's family.
When I got divorced, my children and I moved to CO where I am from and where my family is.
At that time, my son had behaviors that we had worked on for 2 years,
When we moved, those behaviors seriously decreased within 2-3 weeks.
Those behaviors are not the ones that we deal with now, and that is a good thing.
So, being in a less chaotic environment and being around people who actually were addressing my son's behaviors instead of just letting him do what he wanted, like my ex husband's family did, has helped him on certain levels w his behaviors.
So, in this instance, I feel that the step son will do better in an environment where he is going to receive the help that he needs, the supports that he needs, and that is going to start him in the right direction in helping him to decrease these behaviors.

Heather - posted on 08/09/2012

Wow.

My son is 15 w severe Autism and is nonverbal.

W a child who is under 6 in Colorado, there is the Autism Waiver.

W my son being older, he is on the CES Waiver.

Regardless of how long wait lists are, get your child on them.

It is awesome that your husband wants custody of his son and you both are working to get him the help that he needs.

Behavior therapy, speech therapy, OT, and PT are beneficial.

Behavior is a way to communicate. This is why speech therapy is important along w behavior therapy.

PECS and an Augmentative communicative device are what we have done as well.

Summer has not been easy for us and I have spent much time caring for my son as I don't want his behaviors to escalate.

I also have an 11 year old daughter and she does not have a disability - she is Gifted and Talented and eager to learn.



Keep up the good work you are doing.

I know that regardless of age, children can make progress.



I am currently between behavior providers and trying to address the school district on sending my son to an Autism Center where we live.



Chicago has some Autism programs from what I've heard. Unfortunately I'm no longer in contact with the person who knew about these.



I only know a few people who deal with severe Autism and that is why I had to.say something on here.

Tiffini - posted on 08/09/2012

Thanks Cherish, I'll be looking into these as well. We have quite the battle ahead with the school since my step-sons mother has been agreeing to him making progress in school at his IEP meetings. The funny thing is, the school has noted no progress but are stating that he is progressing well at the IEP meetings. It's just a big mess. We have a lot of undoing to do!

Cherish - posted on 08/09/2012

If you are having school issues,the book "The everyday guide to special education law" is VERY helpful.
I had issues w/my sons school,and b/c of that book I have been able to handle them by myself...I mostly just cry at the school alot and write a ton of letters.
I will not get on my soap box about school b/c then I would be writing all day long...
Here is some places for special needs kids in your area,I do not know if it will be helpful or not

http://www.chicagoparent.com/topic/speci...

http://www.parenthesis-info.org/

http://www.aspireofillinois.org/about-us...

http://www.communitysupportservices.org/...

Tiffini - posted on 08/09/2012

We're in Chicago. I figured that there would be a wait for the waiver. He is in a special education classroom at school. We just got his progress records and he is making no progress in that school. We will have to hire another attorney to get him taken out of that school and put into a therapeutic school.

Rachel - posted on 08/09/2012

I don't know where you live, but in my county the waiver waiting list is over 3000 people long. Start with your local autism society, get him into school all day, and get a doctor (neurologist or otherwise) to start helping you manage care. Most county school systems have classes that use behavioral teaching methods and provide OT and speech.

Tiffini - posted on 08/09/2012

Colorado was the first one I found. I did some searching and was able to find one in Cook Co. We're going to discuss the application process at tomorrow's court date. I am really interested int he gluten free diet and will be discussing that as well. My husband and I totally disagree with the hitting! He is non-verbal and the only way he can express himself is by screaming and/or acting out. His mother fails to realize that. My husband and I do not have any children together. We are trying to get things together for his son first. I am little concerned with having a baby around my step-son. Right now he is in his own world and pays little attention to others. As he gets older I'm not sure how he would react to being around a baby. He's six-years old.

Cherish - posted on 08/09/2012

Did you find you counties CCB?They are the ones that do the CES waiver,Colo is like 49th as far as funding,so hopefully you have more programs there then we do here,my son was on the CES wait list for 5 years.
I totally agree that hitting/yelling is never ok,esp not for kids w/severe autism that prob don't understand why you are getting mad at them.I also agree that the GF diet has worked for some kids,I believe many kids w/autism have tummy issues.PECs can be very helpful to lessen frustration for non verbal kids.Brian started w/PECs and then he got a aug com device and the device has helped him alot w/communication.
I highly recommend that if you do not have other young children that you at least baby proof your house before he comes over,it just makes things easier.I am sure if he has severe autism that he may have some difficult behaviors.How old is he?

Tiffini - posted on 08/09/2012

I am in tears right now. I am so happy I found this site! My husband and I are getting so much info from you ladies and are so greatful. I have been hearing quite about about a diet change, I will mention that to my husband. We have a court date tomorrow to set temporary visitation for my hubby until a decision has been made regarding custody. We will also be disucssing the CES waiver as well.

Tanya - posted on 08/09/2012

HI there. I would try my best to get custody of him, hitting and screaming at any child especially an autistic child is NEVER ok! I have a 5 year old son who was diagnosed at 2.5 years. He was pretty much non verbal until I put him on a gluten/dairy free diet (he does have a dairy intolerance) and I noticed a difference in his speech and behaviour within a month, however I am aware that this diet hasn't worked for everyone who has tried it. Wearing diapers at an older age is quite common, my son still wears diapers at night but underwear during the day. Early intervention worked very well with my son (I live in New Zealand so everything is different here) and his speech therapist was wonderful with him and taught me how to speak to him and what to use - cue cards were a big thing in our house and worked a treat. Good luck and hopefully you get full custody of him as it sounds like his needs are not being met with his own mother which is a shame.

Cherish - posted on 08/08/2012

I can think of at least 15 people w/severe autism,that I know personally(including my 10 year old) that have been put on a AED for seizures and they have NOT developed full language,I personally believe that it is a myth.
They typically do not medicate w/AED unless there is the EEG is mod-severely abnormal,as AED can delay development further,as they make so many kids tired.Some AED even make aggression worse.
Most people with classic/severe autism also have some degree of MR.

Tressie - posted on 08/08/2012

We've done a lot with diet and vitamins to help me son. I am not sure how old your step-son is but if he is non-verbal and older than 4 or 5 years I would get him in for an EEG. seizure disorders are very common among ASD kids. Often an active seizure isn't seen on the EEG but they can detect abnormal brain wave patterns which they can give AEDs for. I have seen reports of non-verbal children getting full language after being put on the proper AED. If you want to read more about what we've done to help my son (he started out with a diagnosis of low-moderate functioning autism) you can visit my blog throughthepuzzle.com.

Tiffini - posted on 08/08/2012

No, she sure isn't babbling. I went online yesterday and found a GREAT organization that may be extremely helpful! I'm assuming that it's similar to CES. It offers great services that seem to be a great fit for my son! I'm so excited, I'm going to contact them today to obtain more info and see how we can get this ball rolling.

Thanks so much for your help ladies!

Katherine - posted on 08/07/2012

LOL, Cherish you're not babbling at all. It's all useful info.

Cherish - posted on 08/07/2012

Hi,
How old is he?I can not understand why the mom won't let him have custody..if she is mean to him and is not doing any therapies w/him.
My son is 10 and has severe autism(which I prefer over the term "profound"),he is also non verbal and wears diapers.He has some significant behaviors and can ,at times,be a danger to younger children and himself.
What state are you in?Is he on any of the waivers?If he is not you need to get put on the waiting list for the CES waiver.
As far as therapy if he has medicaid he should be in speech and OT.You can get get behavior therapy thru the waiver.If you do get custody then you need to go thru your house and modify anything that is a potential danger.I took my son to a augmentative communication therapist at Children's and he got a speech device,and having that has greatly helped w/ the behaviors that are caused by frustration.There are alot of things you can do...but I do not want to babble on here,so message me if you need info.
Nobody knows what the future holds,every kid is different.If he has severe autism he will probably need care his entire life.none of the adults I know w/severe autism are living independently,tho most of them are happy and live a full life,with support.My son also was dx'd w/epilepsy and that is fairly common for people w/autism.Now I am starting to babble,like I said message me if you want more info :)