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We have told our pediatrician that we would be willing to even go out of state if it meant we were going to get the correct diagnosis for Grant and help.  He does go to preschool at the local elementary school because they have a developmental program and he also goes to the local head start.  They have got to constantly watch him even at school because he will hit other kids and pull the girls hair and I think he thinks it is a game because he laughs the whole time.  His bigger brother does help me out some at home with him while my husband is at work.

hi janine and welcome to the board

i have jordon (10) he has autism and ryan (8) we are waiting for his diagnosis . hope u like it here xx

Hi there Janine and welcome to the board, I hope you are able to get the help you need soon, it is not always easy dealing with this but we are all here to support each other..Hi Janine!
Welcome to the board!  It's nice to have you join us!  I have an almost 27 mo old son with PDD-NOS and another son who is about 3 weeks away from birth. :)
Kellie

I am new here.  My middle son who is 4 1/2 years old possibly has Autism.  We have not found the right specialist who will properly diagnos him yet, but we just switched pediatricians and this new one says that it is a 90% chance that he does have Autism because he displays so many signs of it and he is determined to help find the help that he needs.  He does see one specialist, but she has not fully diagnosed him yet, she only says that it is a very good chance that he does have Autism.  She did put him on clonodine to help him sleep at night.  Between the clonodine and melatonin he will sleep at night but his behaviors during the day are just sometimes way more than I can bear.  I just hope that we can get the help he needs soon because I am going out of my mind.

Janine,

Welcome to the board!

I also have a 4 1/2 yr old. He was recently Dx HFA. I was a wreck waiting for the Dx.

I hope this board will help you, it's been a lifesaver for me.

Hang in there.

Nelle

Hi and Welcome Janine!!  I am new here too!!  Look forward to talking with you!  This board is very supportive.

 

Mimi

Welcome to the board Janine!

I'm kinda new myself, but wanted to give you a proper "welcome" anyway.

You'll LOVE this board...we're here to listen, answer questions (when we can) & inform.

I love this board because I've already made quite a few friends here who have the same age or around the same age as my Son. Here, where we live, there is no one.

My name is Linda, I'm a sahm to 3. Tony is our 9 y/o HFA (High Functioning Autism) Son. He was 3 and a half y/o when first diagnosed. My oldest Daughter is 24 y/o & the middle child is my "step"Daughter who is 16 y/o.

I also have 2 Grandchildren ages 5 y/o & a month & a half.

Feel free to PM (Personal Message) me or e-mail me!

Hey janine... welcome to our humble abode....I hope you feel welcome here and get all the support and information you need.

I have a 3 (will be three in July) year old son Zachary who was just DXed at the beginning of this month although we are still going through the evaluation and testing process to better pin point things.  I am also married and we have another baby on the way in a few weeks .... soon to be Jaydin. 

see you around the boards.

 

I am able to talk to my husband about things and he does have alot of the same frustration with this as me but at times it seems that he does not understand even though the clients that he works with are all developmentally disabled.  Sometimes I just feel alone in this like noone understands what I am going through.  This morning my sister in law came over and got me out of bed telling me that Grant was standing on the front porch when she got here.  That scared me half to death.  He was fine but it scared me because he could have gotten out of the yard.

Janie it isn't uncommon for us to be sad and feel drained and like we can't keep going and fighting when we are in a situation like this.... Its so hard Emotionally and Physically!

We are here to listen and to offer support, advice, and encouragement. WE HAVE BEEN THERE TOO AND WE UNDERSTAND You might be surprised

I know the behaviors can be rough there are many calming activities you might want to try to get him calmed and relaxed and reduce the behaviors... many times behaviors are also sensory related there is some info about it on the links page http://www.autism-pdd.net/forum/forum_posts.asp?TID=690& PN=2

Also hought I would mention www.unlockingautism.org has a national call center listed on their site and a parent 2 parent network to help you find resources in your area.

Check with Early Intervention thru your local Special needs school... they may be able to direct you to a free evaluation for autism.... Please let us know how things go

Hi Janine, I just wanted to welcome you to the board. I hope you find this board a place of comfort.please know that we're here for you and yes, we do understand what you're going thru, majority of us have been right where you are today. Welcome to the board Janine. This place will be very helpful for you, especially when you are feeling overwhelmed and doing it alone. It has for me. Also, evidently there are some type of door alarms you can put on your doors to alert you if they are trying to "escape". I haven't had to go this route yet..we have gates blocking all the exits in our house, but as Jakob gets older(he's 22 months)..I'm sure I'll be buying every kind of alarm gadget I can get my hands on...he's a wanderer! Welcome again.

We have considered the door alarms but I just have not been able to find them at our local stores.  I had thought about a chain for our door up high but the problem there is that our front door is metal.    I will be having to do something though because it is just too dangerous otherwise.  We live on an acre so have a big yard but if he gets beyond our gated driveway, the highway is just 30 feet to the left of us.  Whenever he is outside, we have to keep the gates to our driveway locked because he knows how to open them if the lock is not on.  One time he did get out of the gates when they were not locked and he was found on the side of the highway.  An older gentleman pulled over and was trying to find out where he lived but he could not tell him since he does not speak.  Luckilly my husband was driving by and saw him.  Since then I got him an ID braclet.

If you were to look at him you cannot tell that anything is wrong.

Janine Here are a few links for door alarms.... Usually you can find the less expensive kind in home depot, Lowes, or also Walmart..... Maybe this will help. I know we have a key pad kind (battery operated and you can set it to chime, to sound after a few second  delay giving you a chance to enter the code, or to sound immediately and it is LOUD.! ALSO we drilled into the metal door frame and put a chain lock on high up on both the storm door and the screen door! Never can be too safe.

http://www.homesecuritystore.com/ezStore123/DTProductList.as p?p=2_1_1_1_0_0_118&engine=adwords!276&keyword=%28do or+alarms%29&match_type=

http://store.yahoo.com/nextpowerusa/fial8wiwidoa.html

http://www.janet1.freeuk.com/

http://www.globalsources.com/manufacturers/Door-Alarm.html

http://www.amazon.com/exec/obidos/tg/detail/-/B0007VFN6I/002 -2706503-5434451?v=glance

 

 

Janie, Many of our kids we have trouble getting to sleep in their own bed or in their own room so truat me its all "noraml" stuff around here, and we understand the frustration!

Here are some other links to other ideas for his safety..... and hopefully your piece of mind! 

Kid Alarms

http://www.ion-kids.com/ 

 http://www.brickhousesecurity.com/childsafety.html

http://shopping.yahoo.com/search;_ylc=X3oDMTFjdDZpbGpvBF9TAz k2MDc5MjYwBGsDY2hpbGQgbG9jYXRvcgRzZWMDa2IEc2xrA3RpdGxl?p=chi ld+locator

http://www.safetydefenseproducts.com/childguard.htm

http://www.itave.com/smart_guard.html

911 GPS Child Watch

http://www.hardwares.globalsources.com/si/6007000636832/yste ch.co

Medical Alert

http://www.mypreciouskid.com/medical-id-bracelet.html

http://www.lifejewelry.com/

http://www.hahoriginals.com/catalog/default.php?cPath=66_63& amp; amp;osCsid=7b511578ed6fdb5be67184da2d0a4bed

http://www.laurenshope.com/

http://www.n-styleid.com/

http://www.medicassist.com/

http://www.medicid.com/

http://www.medicalert.org/home/Homegradient.aspx

http://www.bindependent.com/hompg/bi/bindep/store/aisles/gai ncontrol/medmanageprod/idjewelry.htm

http://www.jewelbasket.com/medical-alert-id-bracelets.html

http://www.americanmedical-id.com/home/?usersession=931a85b3 5c9beea0b42f659b165dcda6

http://www.medicalert.org/home/Homegradient.aspx

Hello Janine and everyone else out there. I too am new to this chat board. I have 4 1/2 year old son named Trey who just got diagnosed with Autism. Right now he receives speech therapy and occupational therapy for his sensory intergration problems. I'm starting my appeal against the health insurance 'cause they have stopped paying for his therapy. They believe that he is making minimal progress and they feel like we should just leave it up to the school system. YEAH RIGHT! Anyway, I was wondering if you guys know of any websites that help me find support groups in my area or even play groups. I heard that there are places that have play groups so Autistic children can learn the social interaction with other autistic children. Also, I see that there are people here who medicate their kids. Is that something that I should address with my doctor or if he needs it...the doctor would bring it up to me? Right now Trey's doctor hasn't been that involved in my process of getting his diagnosed. She just reads the evaluations they send her and perodically asks me how he's doing. Are there pediatrician with more autism experience out there?  Well I would check around and ask questions of any pediatricians that you consider.   I do not know where you live but I am sure that there is someone out there who would work on trying to help your son.  I know that is what we did, the new pediatrician that we have is determined to run all the proper tests on him and find the right specialist who will properly diagnos him because our old pediatrician was not willing to help.  Thank you for the info.  I will look into it.  We have got to do something because I do not want anything to happen to him.  As it is, I usually get up several times during the night just to check on him.  He will not sleep in his room, I am not sure why.  He has this one spot in the family room where he sleeps.  it is right next to our room so I can usually hear him.  I have tried carrying him to his room after he falls asleep, when I have tried he just wakes up and starts trembling and screaming so I do not force it.  He will not even go into his room in the daytime by himself.  He will only go back there if his brothers are playing.

Hi Someone_Short Welcome to the board.  Pediatricians dont usually diagnose Autism Spectrum Disorders but they can write refferals to the right places. I woul drecommend a developmental pediatrician, or pediatric neurologist who specializes in autism. There are also specific autism centers who diagnose too. I dont know where you are, but  you can go to www.unlockingautism.org and they have a national call center phone number listed and also a parent 2 parent network that can hopefully connect you with someone in your state to help you find supoort groups and play groups and other resources. I would also suggest you calling or going to your local special needs school for mentally retarded and developmentally delayed. they should be able to help you find support groups and other resources as well. PM me if you would like me to help you try to find things specific to your area I will do what I can.

I was told schools can not diagnose a medical problem only non medical learning problems. As far as the insurance Im not sure what to tell you there but if he is diagnosed with an ASD he might qualify for state assisted medical where you could get additional services.

Regarding medication .... Meds are everyones own personal choice. I would say if you feel the behaviors are controllable without meds go that route if they arent controllable ask the dr for help.... there are also activities you can do with your child to gain focus or to calm down nothing works 100% for any child and each child is different what works for one doesnt always work for the other. Hes your child you have to do what you feel is best for him , but remember too meds dont fix or cure it...   and please don't believe anything that claims to do just that!

MsSteelersFan38502.5902083333Thanks so much Michelle! I find your message extremely helpful. I'm going to look into finding a developmental pediatrician. I live in Utah and it seems like this state doesn't put any effort in it's education process for children in general...especially children who need special assistance. Trey was diagnosed at the Utah Department of Health with Children with Special Needs. I just received his report last week diagnosing his autistic. However it had no resources or anything helpful on it. It stated he was autistic and that he should continue his speech therapy. It didn't mention at all his occupational therapy. Than at the end of the evaluation all it stated was some books I should read and a couple of webpages to go to. Which is how I found this one. I would of thought since it's the state department it would have had some information on local support groups or anything else the state has to offer but it didn't. I'm having a hard time finding anything in this state to help me. There's no summer camp programs and only one autistic school in the whole state. Here Trey will be entering a regular kindergarten class with resources...however the school isn't happy that he's not potty trained yet. He just doesn't care....we've tryed and am still trying but he gotten it. Anyway, I'm just going on and on. I'm going to go to that website about unlocking autism right now. Thanks again. Hi Someone Short, Just wanted to say welcome to the board and that i hope you'll find it comfortable and knowledgable. I look forward to chatting with you morehey janine, welcome to the board,mom2carllo who's 5 and pdd-nos. hope you like it here. it's been wonderful to me.take care.mom2carloI do like it here.  I have gotten some good advice.  I just took Grant to his doctor today because our new pediatrician finished going through all his file and his schools sent in letters to him also commenting on his behaviors.  He said that he really wants to see if we can get a full diagnosis on him and had Grant get some blood drawn today to check his blood count, liver and thyroid to see if there is any other kind of disorder going on.  But he is also going to get either a ct scan or a mri soon too because he still thinks possibly autism, though he does not display all the signs, he displays alot of them though.  So atleast we are getting one step closer where noone else cared before

I know that you are waiting for answers (I did the same thing), but if you want to get prepared here are some of the things you can do.  Some of this has been gone over before (many times

There are many roads to treatment and it depends on what you can find in your area and what is right for your child and your family. The two big areas that are usually serviced through insurance are speech and O.T.  If you haven't read "The Out of Sync Child" and the "Out of Sync Child has fun", I recommend them. You might learn more about your child and how you can help them. I found them very helpful.

A lot of people use an ABA type program which is now days is more positive reinforcement than the old Lovaas program. These programs are designed by a behavioralist (usually) and run by parents, people from church, trained professional..whoever you can come up with. My daughter is getting a program through the school, but it isn't nearly intense enough. ABA has worked for my child, but it is time and $$$$ intensive. Catherine Maurice has some pretty good books on how to start a home program.

Many people (especially with younger children) use a method called Floortime by Greenspan. You can google this. This is an extremely popular and I believe effective method.

After you start the therapy in place..you can try some alternatives like the GF/CF diet. Many people find it is very helpful for their child. I never did it and wish I would have earlier (I too have a 4 1/2 yr. old with older sibling) and I know that it would be a giant headache..more so than when she was 2.

Now comes the research (which I am sure you have already done). Nobody has ever GIVEN my daughter anything..we had to go out find it (usually pay for it ourselves). Check with unlocking Autism and your local state Autism Society. Check with the Universities (that is where we found my daughters first ABA program). Many States also have groups called FEAT (families for eff. aut. tx.)

Take care and God Bless, Renee

Hi Janine, Hi Someone_Short!

Welcome to the board! 

I'm Ali, mom to Nicholas 4 1/2 dx w/ pdd/nos at age 29 mths...It looks like you are getting lots of good info here and I agree w/ folks telling you its hard to wait for a dx...actually I was lucky to get him dx so early because really only two things triggered me something wasn't right his lack of real language and his little eye contact...other than that he was doing really well...the ped told me I was crazy she just say him a week before me asking for a referral and thought he was doing great! , my dh told me I was crazy, my mom, my mil, my sister etc...etc....so I know how you are feeling...its so hard to feel like you just know or you just need to know because it makes it make sense somehow w/ the dx and also it enables them to rec. services which really help them excell...Now the whole crew is on board and really supportive but it takes time and just stay strong, find out what you need to know and tackle it, I want you to know we are here if you need us...and from all the posts I've read, I think you do LOL...

Glad you both are here, look forward to getting to know you and your children better!

hugs!

Ali

Thanks guys for all your greetings and advice. I love this chat board.

Hi grantsmom (Janine)! I just read the post where you said he fit some of the autistic qualities but not all. My son is same. When I take serveral online tests he comes out borderline on most of them. Which could mean mild autism. Also though it could mean he is pdd instead. Honestly, I still never really understand the diff between them because the signs seem so much the same. But I do know they are both on the autism spectrum and I think pdd means that they just don't fit all the qualifications of autism or apsergers. I took a pdd test and it said Aiden was moderately pdd. So I'm looking at mild autism or mod pdd (or crazy mom lol). So anyway I thought I'd share that test w/ you and maybe if you want you can take it and see what it says. Might help you discover where your child really fits in. You can take it online and then it scores for you and you can print it.

http://www.childbrain.com/pddassess.html

And here is something to print to go with it. It tells you about the scoring and helps go into more explanation on each question. It really helps when you're not sure what they mean. I'd print this to read before taking the actual test:

http://www.childbrain.com/pddassess2.html#grade1

Hope this helps some.

Amber

Thanks for those links.  I printed the explanations for each question first and then took the test.  THe score was 143 suggesting moderate PDD.  I know that is not a final diagnosis or anything but it gives me something else to go on.  I think I will show it Grant's pediatrician.  I am just glad that we are finally moving forward with this new pediatrician to try and find out exactly what is going on with Grant.  We knew that something was different with him really at about a year old but noone would listen to us.  Everyone kept on saying that he will catch up.  The only ones who believed my husband and I was my husbands mom and sister.  I know that Grant will probably never be a rocket scientist, but I just want the best for him that I can.  THat is why I am trying so hard to get him the right diagnosis and help

Yah he might still be actually autistic. I dont know how the autism tests are going for you. For me they were so borderline. But yah I'd bring it in just as somewhere else to look just in case. I know I will. Good luck!

Amber

Well anything will help.  I know when Grant was tested by our pediatric developmental specialist the results for Autism were inconclusive but then again that test was about a year ago
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