DESPERATE FOR ADVICE!!!!!

[tlrway]

My son is 3 yrs. 8 mos. old. I was a stay at home mom until January of 2007. When I returned to work he went to a local daycare. During his first week there...literally after being in daycare only four days....I was approached by the daycare director. She informed me that my son had shown some "odd behaviors" that concerned them.....signs that she felt might be "austism". She said my son would not allow the staff to touch him, hug him. My reply to this was: "HELLO!!!??....you people are complete strangers to him..he's been home with him momma his whole life and now he's in a whole new environment...DUH!" Then she said he would not allow the teacher to put an ink stamp on my sons hand....didn't want any part of a sticker on his shirt either. Now I knew he has always had issues with stamps and stickers but didn't think much of it. He also doesn't like band-aids, cannot stand his hands messy, hates finger painting etc. She said he also prefers to play alone for the most part. And most days when I picked him up..there would be my son off alone in a corner doing a puzzle or playing alone while the other kids were in groups playing together. His vocabulary is huge...started talking early and has no trouble communicating to you what he wants. He does have what is called a "lateral lisp" and does have trouble understanding language...takes somethings out of context or literal. He's in very loving and loves to cuddle, hug,give kisses to family members...that's never been a problem. He used to cry more than he didn't cry, but that has gotten better. He does have trouble understanding others feelings at times. His motor skills are definitely not the best. He was horrible to potty train....just trained him finally at age of 3 though. He seems to have endless energy...runs wild in a store if you do not have him contained to a cart or stroller. Has no fear of traffic...will run loose in a parkign lot if you dont have a good grip on him. Just wears me out emotionally and mentally most of the time...keeping up with him is a chore. He does make good eye contact, knows letters and numbers...can spell mom, dad, dog, and his name. Can write his name, but writes some of the letters backwards which concerns me too...is this a sign of dyslexia or something else? His family doctor has assured me many times that he is NOT autistic. But...she doesn't see him for more than ten mins....she's not with him at home or in social settings. He is very rude and hateful at times....recently went up to an elderly lady in line at Sears and hit her on the backside. She went off on him...yelled at him asking him "What's your problem!?" Then telling me: "I hope to hell he doesn't do that when he's sixteen!" I then in turn went off on her...telling her "Lady..he's three years old!!" I wasn't making excuses for his behaviors...it wasn't right of him to hit her, but she upset me too! That lady hadn't spoken to us, looked at us..nothing. So why would he do that?? Just one of those weird and off the wall things that he does. He used to love baths...now when it comes time to wash his hair..it's like trying to baptize a wild cat! He throws tantrums. My mom will say: Well if I took him to church he would behave because I'd make him! Well...we do NOT let our kids run wild....we do discipline them. He gets time out and spankings when deemed necessary. I just know there's something different about him. He will misuse pronouns...like when he wants me to hold him...he'll say Hold ya (hold you). He will word sentences strangely. People have a hard time understanding his speech. There's simple common things I feel he should understand at his age but he just dont get it. Like when he hit the old lady in Sears...I made him apologize to her and all the way home kept asking him: Why did you hit that lady? To which he replied: "on the butt"....as if I was asking him WHERE he hit her...I was asking him WHY he hit her! At times I feel he's hyperactive. He loves to aggravate and antagonize his 7 year old sister....totally normal. There's just some real quirky things about him. I have made him an appt. at Riley Children's hospital at an outpatient psychiatric clinic that specializes in Autism, ADD, LD, etc. I did seek assistance through a co-op in my area...he's working with a speech and also an occup. therapist now..they both think there's something different about him as well. They had me and his daycare teacher both fill out a long test....asking lots of different questions about him. His test scores were all over the place....just such scattered abilities. Anyone have any suggestions, advice, input. I'm worried sick about the possibility of being diagnosed with Aspergers. He does line up toys occassionally, but not on a regular basis. He does walk on his tiptoes once in awhile when he's barefoot in the house, still not a constant thing though. The daycare said he definitely had some sensory issues with textures, etc. I have researched and researched online till I've made myself nuts! He goes to Riley in February and I hope I can keep my sanity till then.HELP!!!!!!!!!!!

[mjthewriterdad]

my only problem with Jenny Mc carthy is that she thinks autism can and should be "cured"  She is part of a group  DAN (Defeat Autism Now).   There is a simmilar group CAN -- Cure Autism Now.   IMO, mjthewriter has autism and she and I wouldn't want it any other way.  This is what defines her.  It is a part of her being.  Sure we should provide coping strategies and help, but to eradicate autism  like polio or smallpox is to irradicate a rich component in our society who contributes.

Glutton/cassien free diets may help, Dr Bernard Rimland advocates viamin B12 treatment.  Then there is auditory training and other treatments that  work for others too.  There is even a dolphin therepy out there.   Don't get stuck into one mode.  I personally don't look for any "silver bullet"  some things may help some things may not.  If any treatment or methodology doesn't do it for my daughter, it dsoesn't mean it won't for anyone else.  
it all depends on a lot of things.

Problem:  In the USA, insurance companies won't pay for a lot of this stuff they call it "experiemental."   Grrrr

[MJIthewriter]

Dealing with autism myself, I can relate to some of the experiences. Texture aversions include not liking my hands feeling rough. I use hand lotion.  When I was a child I did some strange things. I did not know how to react in front of people, which lead, and still leaves awkward moments. For me, I have to learn how to behave in front of people. Feeling other people's feelings does not come naturally. I learn from trial and error. It does help when people give pointers how to react in certain scenarios. Otherwise much of my learning comes from trial and error. I may expect x reaction, get y reaction, and then wonder huh? Afterwards I may ponder over it and think what could have been done differently. As a child, I didn't do this pondering to the same level. For some reason I felt it was appropriate to grab toys from others. I think reflecting on it, I may have seen other children do so, but not realized that they were handing over the toy, not grabbing.

Writing and typing are a challenge for me even at my age. Thats why I've learned to type much of my stuff in ms word with the "nags" on to catch typos. I also have a hard time reading long content without skipping lines, so I try to read slower and use the mouse cursor to guide where I'm at.

[888mom]

Going to the experts may help, may not.  I don't know.  Riley's Hospital is the best in the state and one of the tops in the country for developmental pediatricians.  I would have trust in them that they would not misdiagnose your son.  And even if your son has nothing other than a few behavioral delays or a mild receptive language problem, I think knowing about it would help and see what kind of therapy or counseling is available.  Worrying about it won't help, and worrying never helps kids, so you have to try to stay worry and stress free while you wait.  It's hard, I'm trying to do it.  Not that I'm worried about a diagnosis, but worried about a misdiagnosis.  What if your son has something and they don't catch it or what if he doesn't have anything at all and they label him with something he doesn't have?  It does help having the best doctors check your child out.  I would go with Riley's if it weren't for the longer wait.  My daughter has no language at all at 27 months, so St. Vincent's which is also highly rated, has a shorter wait list than Rileys, and there is a doctor there that our service coordinator and therapists all know and recommend.  So, I also feel confident that they will not misdiagnose my daughter.  For my daughter, I think time is more of an issue since she has no receptive language yet and has a lot of sensory issues.

Wanted to share a story about a 4 year old that was at our house this weekend with our friends visiting.  I found out most 4 year olds take things literally, even normal 4 year olds.  I made the mistake of jokingly telling my friend's son that we were out of ice cream.  I had dished everyone ice cream and he had said he didn't want any but he decided after everyone had their bowl that he yes indeed wanted some.  Never joke about not having any more ice cream with a 4 year old.  He took it literally.  I wondered if 4 year olds still throw tantrums and had that question answered.  He was still upset even after I showed him the ice cream tub and apologized for joking around and promised him I wouldn't make jokes about no ice cream ever again.  He quieted down only when the ice cream was going down his mouth.  Upside is, 4 year olds don't stay mad at you for long.  After ice cream he forgot all about it.  

[24me]

PLEASE BE CAREFUL.  ONE THING I HAVE NOTICED ON THESE SITES IS FEAR.
I HAVE A 2 1/2 YR OLD BOY WHO EXHIBITS THE VERY SAME TRAITS YOU HAVE DESCRIBED. HE HAD BEEN EVALUATED 18 MONTHS BECAUSE HE ONLY SAID MOM & DAD AND DROPPED A DOZEN WORDS ENTIRELY SINCE HE BEGAN TALKING AT 1.  HE IS ALMOST COMPLETELY COHERANT WITH THE HELP OF SPEECH THERAPY YET WAS EVALUATED AGAIN FOR HIS SENSORY ISSUES.
DO NOT JUMP TO FIND A LABEL TO APPLY TO YOUR SON JUST BECAUSE HE'S ACTING LIKE THIS.  HE WILL GROW INTO A FUNTIONING MEMBER OF SOCIETY JUST FINE. ALL HE NEEDS IS TIME AND YOUR PATIENCE. I CAN RELATE TO HOW DIFFICULT IT IS AND HOW EASY IT IS TO LABEL. I JUST TOOK MY SON FOR ANOTHER DREADED HAIRCUT AND FOUND MYSELF EXPLAINING HIS 'QUIRKS' BECAUSE I FELT THEY NEEDED SOME EXPLANATION AS TO HIS BEHAVIOR. THEY HAD TO REMIND ME THAT THEY SEE THAT QUITE OFTEN.   MAYBE OUR KIDS ARE NOT IN THE MAJORITY< BUT THEY SURE ARE NORMAL FOR THIS AGE.  I'D THINK TWICE ABOUT OUTTING HIM THROUGH ALL THOSE TESTS JUST TO STICK AN OFFICIAL LABEL ON HIM. I'D ALSO LOOK FURTHER INTO lyndaz's RESPONSE ABOUT IT BEING NEUROLOGICAL.  FAMILY THERAPIST OR NOT-IT SOUNDS BEHAVIORAL TO ME. PATIENCE AND HE WILL THRIVE.

[888mom]

you can email me at beth.forster AT yahoo.com
the at stands for the at symbol that you use in email addresses.  Sometimes newsgroups sensor them out.  I guess we're not technically supposed to drop our email addresses, but also protects from trawlers looking for addresses is you type out AT

[tlrway]

thank you so much for your replies! Yes...I am talking about Riley Children's Hospital in Indy. I live just 20 miles north of Richmond, Indiana in a small small town called Lynn...it's in Randolph County. I know Riley is the best and yes...we are going to that Christian Sarkine clinic...it's a psychiatric outpatient clinic...they told me that they can diagnose ADD, ADHD, autism, LD, AS, PDD, etc. They said to plan on being there a few hours though so I have put in a request for that day off from work. I appreciate so much everyone's replies on here. Like you said...it does help you keep your sanity to hear from others going through similar things/experiences. I will definitely keep everyone on here posted as to what we find out....he goes Feb. 14th at 8 a.m. I'll be posting on here what we learn and also would love to stay in touch with you! You dont live too far from me and we could maybe email each other for support and friendship if you dont mind. This forum is a wonderful thing. I appreciate Mozartcowgirls posts so much. She gave a lot of great information to me as well. Everyone is so nice here. Thank you all! I'll be in touch.

[888mom]

P.S.  MozartCowGirl has lots of good answers.  She responded to your post first.  She's answered questions I had about diets.  I know I just talked about poo pooing Jenny McCarthy's gluton/casein free thing because it didn't work for my daughter after a couple weeks. But, i think I'm goign to try out a diet MozartCowGirl mentioned called the makers diet since that worked for her.  You can check my posting about diets.  Maybe watchign foods might help your son.  I do know diets can help things. I have fibromyalgia (possible lupus--doctors keep changing their mind back and forth).  I know my diet can affect my symptoms, which include my central nervous system, joint pain, extreme fatigue, and sometimes rashes.  If particular diets can help things like that, other diets must be able to help sensory issues that my daughter has or possibly with your son.  The problem is figuring out what diet works and what doesn't.  It took years for me to figure out what foods aggravated symptoms and which didn't.  Eliminating and reintroducing and keeping a journal to notice changes.  I realize it's hard to do all that with a 2 or 3 year old, and all toddlers/preschoolers are picky about what they eat and it usually includes a few favorite foods.  Wheat and milk I guess are obvious first choices to try to eliminate to try out first.  MozartCowGirl might be able to give you more advice on what to try outside of the therapists.  Other posters have been extemely helpful as well.  Just mentioning Mozart because she responded to your post.

[888mom]

Take a deep breath.  Just remember, if your son has developmental delays, it isn't your fault as a parent.  And do not blame yourself that you hadn't noticed in the past.  You're getting therapy for him now and have doctors appointments set up, so you are doing the right thing.  Hang in there.  I did not know my daughter had any problems other than her speech, but since she couldn't say a word or understand a word at 2, the pediatrician caught the problem.  Pediatricians I do not think are trained adequately to catch all these developmental delays and I think have only been catching the children who can't talk at all.  

You mentioned your son is goign to Riley in February.  Do you mean Riley Hospital in Indianapolis?  It is one of the top in the country, especially for autism and developmental delays diagnosis.  My daughter is scheduled to go in to St. Vincent's (in Indianapolis) in March but that was more a matter of who and where our insurance accepted and how soon we could get in for an appointment.  One of our 3 therapists works part time at Riley's, at the Christian Sarkine Autism Center and she was hoping I would have taken my daughter to Riley's but we ended up at St. Vincents (also highly rated).  Evidently that Riley Autism Center has a waiting list quite long to get in for therapy.  Anyways, am curious if you meant Riley Hospital in Indianapolis or not.

I'm in the same boat as you are, waiting.  Therapy does wonders, though, and you don't need a diagnosis to start overcoming some of the issues, like speech and sensory issues.  My daughter is going through sensory integration therapy with her occupational therapist. She also has a developmental therapist and speech therapist.  If your son is not doing sensory integration therapy, you should inquire about it.  After 4 weeks of therapy, she is making better eye contact and understanding a few words here and there and even responding to her name half the time (before she never responded to it so that's a major leap forward).  One therapy is a touch-pressure therapy involving brushing her arms, legs, and back with a special brush, doing joint compressions, and rolling her up in a blanket and rolling a ball on her to apply pressure.  The therapist is bringing a weighted vest next week for us to try out.  It is supposed to evidently help kids with sensory issues calm down a bit.  It sounds like your son has some sensory issues.  I did not think my daughter did until she went through the evaluation and the therapists told me what was normal and what wasn't. I just thought every toddler was that difficult about things.

I have found this newsgroup to be really helpful even though my daughter does not have a diagnosis.  She may have something else and it may be entirely just sensory issues, but sensory issues are also what most autistic children also have, hence I find this chat group quite supportive.  There are lots of overlapping symptoms to these developmental delays.  I don't think other parents with children who have autism mind if people join their groups while waiting for a diagnosis.  This whole "umbrella" thing is really confusing.  But, keep posting and checking this site or try to find another site.  I think talking with other people has really helped me keep my sanity.  It has also helped me to figure out what to ask my therapists and what to expect at doctor visits.

Two books that were recommended to me by others on this website that I thought were good were Engaging Autism by Dr. Greenspan or any of the books by Dr. Greenspan and his floortime method.  (his floortime method is used for children with any developmental delays, not just autism).  Another book that was recommended was 10 Things Every CHild with Autism Wishes You Knew.  I cried when I read it because I realized that my daughter can't help how she responds to being overstimulated sometimes.  I thought the most important thing out of the 10 list was "Please remember to distinguish between won't (I choose not to) and can't (I'm not able to).  Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you."  For the longest time I just thought she was stubborn, strong-willed, difficult, bad behaved.  It helped me to realize that my daughter is not a bad child.  She's this loving little toddler who has difficulties processing things, processing language, and sometimes gets overwhelmed by her surrounding environment.  Jenny McCarthy's book was also recommended to me, but I did not find it very good myself.  Her son was autistic and having seizures, and dietary sensitivities to wheat and milk, and had metal toxicities.  I had my daughter checked for sensititivies to wheat and gluten and casein (in milk) and she has no sensitivities.  She has no stomach problems, never had in her whole life.  I think Jenny McCarthy's book about her son is interesting, but does not pertain to every child.  She is really anti-immunizations.  i really do not think that pertains to every child with autism and other related disabilities.  My daughter hated hats and socks and most clothing from the day she was born.  Definitely had sensory issues from day 1, before any immunizations.

Anyways, let me know if you are in the Indianapolis area.  I live in Indianapolis itself, in Pike Township.  If your son's therapists are not giving you enough info about support groups, I will ask my daughter's therapists.  I haven't really joined any groups.  I have a friend in MOPS (mothers of preschoolers group) who has an elementary aged son with autism who has been immense support.

[Mozartcowgirl]

awww i wasnt trying to come down on you at all... i am so very sorry if you took it that way... i meant .. well. that its NOT that bad.. its something you can get through.. of course there are some negatives to asperges and autism.. but again.. there are negatives to everything.. the things that you have told this forum about your son do not seem to be scary to me at least.... maybe hes just different to what "society" deems "normal"

i know that you love your son with every bone in your body.. i know that you would die for him.. and that the very thought of anything ever happening to him breaks your heart..

i know that you feel stressed... frustrated.. and just plain pissed.  

take a deep breath.. you wont be in this limbo forever... you WILL have an answer to what is going on with your son.

rememebr when you were in school?? seriously.. think back to when you were in grade school. and you were just learning to color.. most of the time.. the teacher told you to color ONLY IN the lines.. not on the outside..

WHY IS THIS??? this hampers creativity!!! this tells the child that he cannot be different .. that he cannot choose what he wants to color.. he must conform to what others think is right.

i have NEVER used an umbrella... WHY???   i LOVE the rain on my face.. splashing in puddles.. and just the whole experience..


to me still.. i think that hes so young yet... i think alot of his behaviors are simply coming from an energetic child who has some likes and dislikes that are perhaps a bit quirky to others.  

we can not all be alike.. its our differences that makes us who we are...

time out doesnt work for some  children.. it didnt work for two of my sons.. they would just get right back up again.. even when i tried to tell them the same thing you did with your son.  
hes only 3 and  a half!!!

what i meant about high functioning.. was if he DOES have aspergers.....i meant high functioning..

he sounds like a cuddly.. loving.. huggy.... particular,energetic quirky, picky child.. you said that he has been with you .. and only you .... since birth....  he has had 3 years to be himself... now here he is ina totally new atmosphere.. being told that alot of what he is doing is not correct.

did you notice these things BEFORE the daycare started???

you are NOT an awful mom.. you are scared.... you feel alone probably. and you have all these thoughts running around in your head...and like me.. and millions of other moms who worry all the time about their kids... you have t his thing about daydreaming into the future.. and based upon what others are saying to you .. you think scary things.. or think that your son might not turn out the way you have always thought and hoped that he would.

everything is going to be ok .  honestly.. please let us know what is going on . and how your appointment goes with your son... your son sounds like a great 3 and a half year old.  

god bless

[tlrway]

Thank you for the reply. I am frightened...that's just one of many many emotions I have been experiencing ever since the day the daycare director approached me. I have never seen Switchblade...never heard of it. When you say it sounds like he has neurological problems...what do you mean? Do you mean aspergers? Autism? Something totally different???? Confused by what you mean. I know my anxieties wont help anyone...I keep telling myself not to stress out over all this. But I guess I can't help it for now....till I get some answers. Thank you for replying.

[Lyndaz]

I am a family therapist and also a grandmother of a child with Aspergers. From what you describe it seems that your son has neurological problems--his development is uneven. This is sad, not what you want, I'm sure-- but you sound frightened.

People who are odd or different aren't dangerous. Maybe you saw Switchblade and that freaked you out.
Take time with your son. Teach him social skills, work with him. He needs you to be strong, competent.
Get support for yourself, get over your anxieties. They aren't going to help anyone.

[tlrway]

I'm sorry if you took offense to me stating that I was worried sick about my son having Aspergers. My boss at work has a son who has Aspergers. I have talked to her many times about my son and we have shared experiences etc. I am sorry if I am not someone who looks at autism or aspergers as a positive thing. I cannot help that.....I'm sure if it comes down to a diagnosis of any sorts that I will have to try to see the best in it and be more positive in how I see and look at that. Right now I find the thought of it devastating and I cannot help that. You can call me ignorant..you can call me uneducated...stupid..whatever. I feel how I feel and I cannot help how I feel. You tell me he sounds totally normal...well....I'm with him everyday and I have had three other children before him. I am certain there is something "different" with him. A mother knows her children and he is unlike any of the other children I have had. Yes...I realize each kid is unique and different and will have their own speed of learning things. I think if I've sat here and told you every weird and peculiar thing he does/has done that you might feel differently about him being perfectly normal. I have had five people....three from the co-op where he gets his therapy and two from the daycare tell me that he is showing many signs of "austism" or that something is just "different" about him. I was convinced they were nuts and didn't know anything about him. Then as time went on....I started stressing about it and thinking about it nonstop. He has been labeled right now by the therapist as "developmentally delayed". When they labeled him as that I was so upset. Thinking so now he's going to start school and already have a big X on his back...the labeled child...the child with issues..the problem child...the different child...the slow child. when you say...if anything he is high functioning...what do you mean? Do you mean high functioning autism or do you mean just highly energetic/functioning? I wasn't clear on what you meant.
I by no means mean any disrespect to you...or to anyone that might have Aspergers, autism, or anything else for that matter. I'm just a very concerned mother who is not at ease with many things about her sons behaviours. Just yesterday his therapist told me he has a lot of immediate echolalia in his speech. She will ask him a question...a very simple question that I think at his age he should comprehend and be able to answer. Instead...he will just repeat her question back to her just as she asked him. She said I dont think he understands what I'm asking him. Simple things...like...what do we need when it's raining outside (umbrella!).....I knew as soon as she told me what she had asked him that he wouldn't have a clue what she was talking about. When we set him in time-out in the corner...we'll tell him when he stops crying and throwing a fit he will be able to get up. He will immediately assume were telling him he can get up and he'll get up. Then we have to set him right back down and tell him again...no...you have to stop crying and then we'll let you up...he just does NOT get it. He misuses pronouns and misplaces letters in his words...just so many things that just seem off to me. I cannot help but worry. So you ask why I'm worried sick...well because I have five people breathing down my neck all the time telling me something just isn't right with him...something is different....his test scores are all over the chart...his motor skills aren't quite right....his speech is a mess.....this is what I hear over and over again. Even my mother...my sons grandma says something is different about him. It hurts me and I cannot help but be stressed about this. I just hope to get some answers in Feb. when we visit Riley and know for sure what is going on...if anything with him. Not knowing is what's hard and dealing with him daily takes a toll on one very quickly!!! There are honestly days  that I look forward to going to my job just to get a break from him....isn't that awful...I feel like an awful mom even thinking/feeling that way.....but being around adults and getting to socialize with someone that understands and can communicate with me is a much needed relief I guess. I feel like I'm hitting my head into a brick wall most days. I'm again sorry if I offended you or anyone else...I'm just really tired, stressed, frustrated, angry. and need some answers. Thank you for the reply. I appreciate your input.

[Mozartcowgirl]

he sounds perfectly "normal" to me.. but i have to ask.. WHY are you worried sick about your son being diagnosed with aspergers????????

i am 37.... intelligent.. a mom of 7 beautiful children.. i am proud of my aspergers..

if anything.. he is high functioning.. i doubt he even has aspergers.. and if he was given a diagnosis of aspergers.. so what!!!

if one of my kids smacked an elderly woman on the butt... at his age.. well.. come on!! i would have said.. hey.. you still got it grandma!!

i would of of course apoligized.. but.. you cannot take experiences like that. and turn them into large things... just act like nothing was wrong.. dont bring attention to it .... be calm. cool.. collected...

he seems VERY intelligent.. already doing many things 6 year old just begin... inverting letters??? well thats normal.... even at the age of 6 .. its considered ok...

hes only 3 and 8 months... give him some time..

dont be freaked out.. who care that he has some texture issues!! i dont like tin foil.. i dont like cotton balls. i dont like alot of textures.. arent there some things that you feel and dont like??

hmm. the water things.. thats normal.. i still walk on tip toes..

you need to do a google search for .. POSITIVE things about aspergers.. its not some negative sentence that you should affix on anyone.. it can .. and IS a wonderful thing...

your son sounds awesome to me..

everyone is different.. its embracing those differences that makes our children love us even more...

take care!!