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Forum: Children with Developmental Delays and Disorders

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  #1  
April 12th, 2012, 11:51 PM
justjaQ's Avatar Platinum Super Mommy
Join Date: Nov 2005
Location: Sterling Heights, MI
Posts: 19,640
so, i'm jaQ, 27 and mom from metro detroit-- mom to Timmy- 8.5, Melissa- 6, Nicholas- 2, and baby Damon is nearly 12 weeks. i have never posted here, because i haven't needed to, but it's nice to see some familiar "faces".

I've been worrying more and more over the past few months about my middle boy, Nicky. he is 26 months now, and can say all of about 5 words-- and not clearly. i kept telling myself he was fine, because my daughter was 17 months before she began talking, and now she is just one of the most brilliant kids i've ever encountered-- timmy too-- he talked just past his first birthday, and has an INSANE vocaburaly for an almost-9-year-old. it, however, hasn't improved for nick, though.
he happens to be a little terror, and my dad just mentioned last week that HE believe this is nick's ploy to play innocent when he causes trouble-- act like he doesn't understand. but, we know he understands very well; he seems to be a very smart kid, he just doesn't speak back to us. so, THEN my mom mentioned that she thinks he's autistic the other day, and for some reason, that is the first time it clicked in my head. i've done a lot of research, and...

here is just one of the many pages i've looked at over the past few days, and i'll makes notes on whether it fits nick or not... also don't know whether i should look into autism support groups online NOW (like this) or just wait until there's a diagnosis.... don't know whether i should post about this in his playroom here on jm, either.... anyhow, here's one website's "guidelines", and all opinions are welcome. i'm DEFINITELY having him checked out asap though, since it seems to me i've always heard there are better outcomes the earlier you catch autism.




  • Extreme difficulty in learning language. i can count his vocabulary on my hands-- however he seems to understand basically everything he's being told. whether he listens, is another story-- that's hit or miss. he's VERY defiant (like his mother, heh...)
  • Inappropriate response to people. A child with autism may avoid eye contact, resist being picked up or cuddled, and seem to tune out the world. he rarely makes eye contact, even when you call his name repeatedly or ask him to pose for a photo... he does like being carried at times, but had always despised cuddling/being rocked... oftentimes he most definitely tunes out the world-- don't know if he hears us call him or not, but we usually have to physically remove him from what he's doing, when it's time to do something else, and boy does he have a tantrum over that.
  • Inability or reduced ability to play cooperatively with other children or to make friends. he plays extremely rough with his older siblings (he likes to squeeze damon, and pet the baby's head, and will sit next to me, point to my newborn, and then point to his own lap, wanting to hold him, but he's not gotten it yet, that he canNOT be rough with him, and still tries to bite me, and doesn't hesitate to hit me, his siblings, grandparents, 90/96-year-old GREAT-grandparents, etc., though he's been told repeatedly that he CANNOT do that... i have yet to have him play with kids his own age, and the idea makes me nervous, because it's as if he has no boundaries.
  • Inability to understand other people's feelings. not sure what this one refers to.
  • Need for a rigid, highly structured routine -- and being very distressed by changes in routines. doesn't seem to be a problem, in my opinion.
  • Extreme hyperactivity or unusual passivity, and extreme resistance to change. he's hyper enough that an ADHD diagnosis wouldn't surprise me.
  • Aggressive, self-injurious behavior. i've had CPS called on me more than once, because as a crawling infant, he took great joy in repeatedly banging his head into the wall, creating bruises that got me looked into as a parent, but always dismissed when they'd see him crawl over to the wall, bang his head, and laugh. nowadays, he'll jump atop one of his larger toy trucks, and run full-speed into walls. it's as if pain doesn't affect him.
  • Repetitive body movements, including pacing, hand flicking, twisting, spinning, rocking, or hitting oneself. n/a, as far as i can see
  • Insensitivity to pain or lack of response to cold or heat. he almost never cries when painful things happen. he simply gets up and repeats them (sometimes) or moves on like nothing happened.
  • Impulsive behavior and no real fear of dangers. he and his (non-autistic) half-sister (they don't see one another, so it's not like they're copying) are both HUGE risk takers. good god. nick will jump OVER the steps of my grandma's front porch, to the ground, just for fun... he climbs my grandma's walker, and stands on top of it with a smug look on his face... he climbs to the VERY top of a rocking chair (yes, the part we rest out heads on) and stands on top of it, if he thinks he can get to something hanging on the wall that was previously out of reach. he seems to think he's invincible.
  • An unusual attachment to inanimate objects such as toys, strings, or spinning objects. utterly obsessed with his trucks/matchbox cars, and screams bloody murder if you try to take him somewhere without him having a few to take along.
  • Frequent crying and tantrums for no apparent reason. well he has these often... but i think there's usually a reason.
  • Peculiar speech patterns. A child with autism may use words without understanding their meanings. n/a doesn't exactly speak
  • Abnormal responses to sensations such as light, sound, and touch. At times, a child with autism may appear deaf or may be extremely distressed by everyday noises. ------- (he's obsessed with turning lights on and off... ?)
Call Your Doctor About Autism If:

  • Your infant or child resists cuddling and doesn't respond to his or her environment or to other people. always hated cuddling-- as an infant it made him cry, and as a bigger child, he gets away from you any way he can, as quickly as possible, even attempting to slam himself backwards to try and throw himself out of your arms onto the floor.
  • By about the age of 1 year, your child is not pointing to objects, bringing items to you, or engaging in simple interactions such as "peek-a-boo." he does these now, but definitely wasn't doing them at age 1.
  • By the age of 16 months, your child is not using any words or attempting to communicate. just a veeerrrrry small handful- MA= me, my mom (grandMA), my grandma, and anyone else who goes by grandma or mama, that he knows... cat, light, once in a blue moon he'll say hi or bye, and then he says My & By for my brothers Mike and Brian.
  • Your child bangs his or her head or demonstrates self-injurious behavior or aggression on a regular basis. we did get him to stop the head-banging, but that was a MAJOR problem for us, for months and months and mooooonths. he did it daily, constantly and thought it was funny when i'd get upset about it.
  • Your child demonstrates unusually repetitive behavior, such as repeatedly opening and closing doors or turning a toy car upside down and repeatedly spinning its wheels. none of these things listed here, and i can't offhand think of anything else similar

So he's definitely getting checked out at Early On as soon as possible. My dad thinks that there's no problem-- my mom and i (who have each had four kids) severely disagree on this though. my dad is the one who did not believe i had mental illnesses (and i'll just briefly say that they are so bad i cannot work). he believes addiction is not a disease, mental illness can be cured on its own, that things like these will take care of themselves. well, they waited two decades on my mental illnesses, and it screwed my childhood, and i'll spend the rest of my life dealing with something that they could have at least TRIED to have taken care of when i was 5 (my littlest brother had the same mental issues as me-- he's ten years younger, and by that time, i was *****, but they knew how to help him, and thought i must admit i feel a teensy bit of resent for what *I* could've been, this brother is about to graduate valediction and go to the U of Michigan).
i will not wait on this possibility for nick, even if it means arguing with my family (and i mention them only because i'm a single mom, i need/value their help and opinions greatly, and they are lifesavers for me, since my kids do not have dads.


btw, here's a photo of my little guy, hanging around on his sister's 6th b-day last week:




So, I have a few questions...


for those of you who have children with spectrum disorders, what was the point where you said, "okay, s/he needs to be tested."? OR at what point did a doctor mention the possibility to you?

if you're comfortable answering this one.... how did you feel about it? i must admit that i used to hear people say they had autistic kids, and my heart would break for them. but NOW i feel like, if anyone tells me they're "sorry" to hear my son is autistic (if he is), i think i'd be rather offended, because he's an amazing, brilliant, beautiful, happy, special boy, he's MINE, and he was born to be who he he-- NOTHING could ever make me feel differently, and if this is how his life was meant to be, that's it. every person on this earth has differences, and i would never tell someone, for example, "i'm sorry you're short," or "i'm sorry you're gay." we are who we are, no apologies needed. i wondered if that was me and my generally weird outlook on life, or if it's common to feel peace and acceptance, rather than anger.

thirdly, my schedule atm is PACKED. what kinds of therapies (if any) are open to children with developmental delays, how often, etc.?? do they seem to help? i want to know everything, in the case that this is what's going on with my boy.

i know i'll have more questions, and it will be a while before we know what's up, as it's not like we can just get him in for testing tomorrow... but i hope i'm welcome here while i'm going through this.

this whole thing has opened my eyes up sooooo much to what it means to have special-needs kids. when i was younger, i viewed it as a curse; now, i can't help but see it as a blessing., and a challenge for us parents to be more loving than ever.

thanks for reading if you got through. in any event, i'll be in here as i can, if that's okay, keep you all posted once he gets a diagnosis, though i must mention that i have short-term memory loss, so that can't totally be a promise... but i'm a pm away, and on facebook, i'm jacqarntfield, with a space between the Q and A.

peace, love, patience, and happiness to you all!
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msjaQ- 28, pantheist AP detroit mama to:
timothy michael, august 31, 2003, 12:02pm, 8 lb. 4 oz., 21"- 38 wks.
melissa may, april 7, 2006, 1:31pm, 7 lb. 10.5 oz., 19.5"- 36.5 wks
nicholas michael, january 31, 2010, 5:12pm, 5 lb. 11 oz., 18.25"- 37.1 wks
damon michael, january 21, 2012, 1:31am, 6 lb. 14 oz., 20", 38 wks
rainbow baby left me at 6-1/2 weeks on 09.08.12~ never forgotten, sweet child



Last edited by justjaQ; April 13th, 2012 at 12:06 AM.
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  #2  
April 13th, 2012, 12:52 PM
Jintana's Avatar Dragoness
Join Date: Apr 2010
Location: Milpitas, CA
Posts: 1,768
also don't know whether i should look into autism support groups online NOW (like this) or just wait until there's a diagnosis.... don't know whether i should post about this in his playroom here on jm, either....

I think you should post to places like this and to places like your playroom but before you look for Official Autism Support Groups, figure out how you feel about autism (diagnosis or no). There are distinct types of support: acceptance, awareness, cure, etc. For me, signing up for a cure-oriented group when I'm an acceptance-oriented parent would have been counterproductive.

  • Extreme difficulty in learning language. i can count his vocabulary on my hands-- however he seems to understand basically everything he's being told. whether he listens, is another story-- that's hit or miss. he's VERY defiant (like his mother, heh...)


    It's the understanding of language at his age that's more important than the usage of it. Can he get his basic needs met by using language that doesn't involve screaming until someone figures it out? If you have his full attention and he is being cooperative, does he follow directions?




  • Inappropriate response to people. A child with autism may avoid eye contact, resist being picked up or cuddled, and seem to tune out the world. he rarely makes eye contact, even when you call his name repeatedly or ask him to pose for a photo... he does like being carried at times, but had always despised cuddling/being rocked... oftentimes he most definitely tunes out the world-- don't know if he hears us call him or not, but we usually have to physically remove him from what he's doing, when it's time to do something else, and boy does he have a tantrum over that.
    [/I]

    The photo thing could be aversion to the flash or just how 2 year olds are. Throwing a tantrum over being interrupted is behavior that persists well into adulthood for MANY people (in other words, normal as well).

    Not responding to his name (assuming he's not totally engrossed in an activity) and not liking to be cuddled are red flags. For what it's worth, my autistic kid absolutely LOVES cuddles, so the non-cuddlability is not an absolute with autism.




  • Inability or reduced ability to play cooperatively with other children or to make friends. he plays extremely rough with his older siblings (he likes to squeeze damon, and pet the baby's head, and will sit next to me, point to my newborn, and then point to his own lap, wanting to hold him, but he's not gotten it yet, that he canNOT be rough with him, and still tries to bite me, and doesn't hesitate to hit me, his siblings, grandparents, 90/96-year-old GREAT-grandparents, etc., though he's been told repeatedly that he CANNOT do that... i have yet to have him play with kids his own age, and the idea makes me nervous, because it's as if he has no boundaries.

    Totally common to not understand to be gentle with the baby at his age and years later. I watched a completely typical almost 4 year old pounce on her baby brother two days ago.

    Hitting, especially while receiving strong attention for it (positive OR negative) is also very common at his age. A good sign is that he is communicating that he wants to hold the baby. Pointing is a big deal in early autism diagnosis, as you have read. Biting, too. Especially if he's working on his 2 year molars still.

    At his age, he should be parallel playing (sitting next to another kid and participating in a similar activity, without give-and-take or active turn taking), looking at people's faces when he's interested in them, and maybe trying to take turns.




  • Inability to understand other people's feelings. not sure what this one refers to.

    Hard to define at his age. At age 3, I expect my kid to heed another kid's "stop, don't do that" instead of laughing. But kids notoriously try to piss each other off and act "self-first" when playing together. Perhaps at age 2 I'd expect a typical child to be curious as to why someone is crying or angry.



  • Need for a rigid, highly structured routine -- and being very distressed by changes in routines. doesn't seem to be a problem, in my opinion.


    Also a possibility and not an absolute. My autistic kid doesn't have a problem with this, either.




So he's definitely getting checked out at Early On as soon as possible.

Good; this is how you get services, and getting services under age 3 makes the transition to public school (assuming you are going that route) at age 3 SO MUCH EASIER. Services are also independent of the medical diagnosis.



i will not wait on this possibility for nick, even if it means arguing with my family

I really hope your family chooses not to argue with you over getting a free assessment for free services that could give your child a major advantage should he need it..





for those of you who have children with spectrum disorders, what was the point where you said, "okay, s/he needs to be tested."? OR at what point did a doctor mention the possibility to you?

18 month well visit, right before getting ready for vaccines. Routine questionnaire had a question about following one-step directions; he couldn't. Doctor asked us the M-CHAT questions and he failed it, mostly because he didn't yet point. We knew he was not a completely typical kid but we didn't feel he fit the stereotypes of autism.




if you're comfortable answering this one.... how did you feel about it? i must admit that i used to hear people say they had autistic kids, and my heart would break for them. but NOW i feel like, if anyone tells me they're "sorry" to hear my son is autistic (if he is), i think i'd be rather offended, because he's an amazing, brilliant, beautiful, happy, special boy, he's MINE, and he was born to be who he he-- NOTHING could ever make me feel differently, and if this is how his life was meant to be, that's it. every person on this earth has differences, and i would never tell someone, for example, "i'm sorry you're short," or "i'm sorry you're gay." we are who we are, no apologies needed. i wondered if that was me and my generally weird outlook on life, or if it's common to feel peace and acceptance, rather than anger.



At first, I was fairly messed up over it. Here I was, being told that my baby might essentially never progress out of infanthood. But I spent the time grieving and got over it, and realized that he was developing just fine (differently, sure, but not a failure to develop) and that we were all going to be ok. And that most people had a considerably different IDEA of what autism was versus what the real experience is. Most people assume that an autistic kid is completely incapacitated and has a low IQ. Totally not the truth for most. I don't like being told by someone that they're sorry or praying for us or any of that crap.



thirdly, my schedule atm is PACKED. what kinds of therapies (if any) are open to children with developmental delays, how often, etc.?? do they seem to help?

What we received was ABA therapy in home. 15 hours per week, therapists would come to our house and teach him things like making eye contact, making choices, responding to his name, following directions, using language and/or communicating. I had to be at home for the therapy but it was often free time for me because I wasn't supposed to be involved in the lessons most of the time.



Welcome to the board and keep us posted!
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  #3  
April 13th, 2012, 03:19 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
There are alot of signs you are seeing in your son that I seen in mine when he was that age.
-he rarely makes eye contact, even when you call his name repeatedly
oftentimes he most definitely tunes out the world-- don't know if he hears us call him or not, but we usually have to physically remove him from what he's doing, when it's time to do something else, and boy does he have a tantrum over that.
-he plays extremely rough
-still tries to bite me, and doesn't hesitate to hit me
-as a crawling infant, he took great joy in repeatedly banging his head into the wall
-it's as if pain doesn't affect him.
-he almost never cries when painful things happen. he simply gets up and repeats them (sometimes) or moves on like nothing happened.
-utterly obsessed with his trucks/matchbox cars
-he's obsessed with turning lights on and off

•Inability to understand other people's feelings. not sure what this one refers to. This one refers to them seeming worried if someone is crying or hurt at this age.
•Need for a rigid, highly structured routine -- and being very distressed by changes in routines. doesn't seem to be a problem, in my opinion.
With Alex it was doing his bed time routine the same way every night or taking the same route to someones house, if we went a similar route but didn't go to the persons house he would have a fit.


Alex is 7 now (was diagnosed at 3.5 with classic autism) and doing great but concerns didn't come up until he was 2 when I became concerned about his speech, he only had said about 20 words and they were all echolia. He could sing the entire bob the builder theme song but didn't have any meaningful speech. I had him screened and they told me, he is a boy he will catch up. I let that keep me from going to get help for him until he was 3.5, when he was diagnosed with autism. Since then he has had 1 year of speech, 6 months of sensory integration therapy, and just over 2 years of ABA therapy. They all have been major helpers. He is now in 1st grade doing mostly 2nd grade work, he is learning how to socialize better and the meltdowns have decreased to the point where we only see one major meltdown a month.
If your having concerns I say have him screened asap, your right the younger they are diagnosed the better off they are in the long run. And this board is for all developmental delays not just autism, so feel free to stay even if you don't get a diagnosis, this is a great group of moms!!
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  #4  
April 15th, 2012, 10:35 AM
Adriana's Mommy's Avatar I <3 my kids
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Location: Inland Northwest
Posts: 7,977
Hello.. I'm Melissa and my son was diagnosed with Autism at the age of 25 months old. He has always been a bit delayed but he was sick the first 2 years of his life due to Allergies/Asthma. The doctors were not concerned about Autism with him, I asked a family member who works with children with Autism their opinion and that how I realized there was a problem.. In the doctors defense, they were trying to get his breathing in control and test why it looked like he wasn't growing. Turns out he is just short..

To speed up the diagnosis, I went to see a Child Psychologist and had the ADOS testing done.. My schedule is full as well.. I work full time, juggle appointments, and therapy.. As of now, my son is receiving Developmental therapy and Speech therapy. We are going to be starting IBI (Intensive Behavior Intervention) in a few weeks . Which is 22 hours a week, at home and at developmental preschool.

Just remember when your applying for certain therapies, it does take a while and there's steps you have to take. In my state, it's not like you get a diagnosis and you start therapy right away. It can take a months..

As for how do I feel about it.. It's an up and down roller coaster ride of emotions for me.. I'm still in the accepting stage.. With the stress of work and then added stress and home, it has taken a toll on me.. I do have a friend who has a teenage son who is Autistic that I can talk too.. Helps a bit..


If your met my son in person, you'd think he is a normal child with a language delay. Parents with children with Autism tell me this all the time. His symptoms are subtle and it takes a trained eye to see it. Plus, it doesn't help that he is short, people think his is 18-24 months old, but he is really 2 1/2..
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Last edited by Adriana's Mommy; April 15th, 2012 at 10:54 AM.
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  #5  
April 15th, 2012, 10:01 PM
justjaQ's Avatar Platinum Super Mommy
Join Date: Nov 2005
Location: Sterling Heights, MI
Posts: 19,640
thanks girls, i will be back to reply to you all asap-- it's 1am, and bedtime, but i wanted to check into jm first.... ha. thanks for everything you've shared so far, and melissa i would soooo love to steal that bottom banner, if need be. i love it.
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msjaQ- 28, pantheist AP detroit mama to:
timothy michael, august 31, 2003, 12:02pm, 8 lb. 4 oz., 21"- 38 wks.
melissa may, april 7, 2006, 1:31pm, 7 lb. 10.5 oz., 19.5"- 36.5 wks
nicholas michael, january 31, 2010, 5:12pm, 5 lb. 11 oz., 18.25"- 37.1 wks
damon michael, january 21, 2012, 1:31am, 6 lb. 14 oz., 20", 38 wks
rainbow baby left me at 6-1/2 weeks on 09.08.12~ never forgotten, sweet child


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  #6  
April 17th, 2012, 01:24 PM
Carwen*Angel's Avatar Fly away on my zephyr
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Welcome jaQ. We've met before on General Spirituality.

I don't have time during the week for a long long reply but wanted to offer and say from what you've described and knowing what I know I would suspect high functioning autism coupled with ADHD. I think you're definitely right to get him checked out as early as possible, because as soon as you've got a diagnosis or even a doctor looking into things, support and help start to roll in which may really help Nicky progress.

My son has a diagnosis of HFA, though funnily enough he had a lot of the traits that you've marked as n/a for Nicky, and doesn't have the more aggressive/rough traits. I believe my son actually has Asperger's and am pretty convinced he may also have dyspraxia. But anyway that's another story...I never had the train of thought of feeling sorry for parents with autistic or Aspie children because I've taught several such children within mainstream classes and already knew how fascinating and talented they can be - really great kids. It bothers me less and less these days what other people think when they look at Daniel. He's the most wonderful, loving, clever, enthusiastic, life-loving little boy in the world and so many people in his life have developed such close bonds with him and see him as special. I must admit, though, prior to diagnosis it bothered me a bit...the looks from other parents and comments from other children at nursery sometimes used to make me cry, and I do tend to get people tutting and pulling faces if he's having a meltdown in public. It's natural that it takes some adjustment, but I promise you get a harder shell as time goes by, and get braver about saying to people "he's not being naughty...he's autistic".
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  #7  
April 17th, 2012, 02:07 PM
Fae*Aibell's Avatar Mega Super Mommy
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Hi JaQ, im Molly, im from Ireland and I have 2 boys Jake,7 has Aspergers and Dyspraxia, and Reese 5, has Aspergers and Oppositional Defiance Disorder. I don't have anything new to add as i think the other ladies have given great advice, just wanted to introduce myself and let you know im here if you need to talk. Keep us posted on how you get on with the assesment.
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