So Overwhelmed..Is there something going on with him? - Mothering Forums

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#1 of 30 Old 10-28-2011, 05:13 PM - Thread Starter
 
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I'm not ever sure where to start here. I'm posting I guess to get some other opinions on whether I'm on the right track looking into Sensory processing issues, and possibly PDD or Aspergers, for my almost 3yr old.

 

I'm feeling very overwhelmed parenting him every day (I'm a full time stay at home mama to him and his 9mo old brother)

 

When he was a little baby, he wasn't a baby that just screamed, Most of the time we could keep him pretty happy, but it did take a lot of work. He was carried constantly by me, rarely by his Dad before 10mo or so. He slept on my chest or in my arms constantly, and still does much of the night. He always required a lot of work to get him to sleep, and keep him there. Very vigourous bouncing on the fit ball, patting, rocking, feeding, singing, reading etc, every sleep time. At 2yrs when I was very heavily pregnant with his brother, he still required this heavy bouncing to get to sleep, and would feed for 2-3hrs during his nap.

 

He never liked other people much. When he was little 3mo on (maybe)? He would scream and cry when people smiled at him. Often just when they looked at him. This include my family and friends. He still avoids eye contact with people unless they know him very well, although he is very happy and social with most of our close friends now, as long as they don't actively try to interact with him (let him approach them first)

Even yesterday when we were visiting my Dad, I had to hold him the whole time. When I passed to him his Dad because I needed to pick up his little brother, who was crying, he just screamed and cried until I took him back.

 

He doesn't adjust well at all to change. For example, every morning we have the same routine in order to avoid tantrums. He wakes up, and I get up with him quickly, picking him up (he always demands this), I take him to the toilet, always taking his pants down and up for him (he usually does this for himself during the day), then if I need to use the toilet he *must* sit on my lap. Then we go back to the bedroom to breastfeed. Once he's finished he *has* to hold the boob while he watches some shows. Then I have to carry him to the kitchen, so on and so forth.

Sometimes we have better day where he is ok to not be carried from room to room, but not usually.

 

He's very verbal. He talks constantly when we're at home. I find it so stressful :( I just can't seem to concentrate on anything because every few seconds he's saying "Mummy, look at this! It's got wheels!" Look, look! It's a spider!" Over and over and over and over. He also speaks quite well, saying things like "Mummy can you please put the water bottle down there" Pointing.

 

He still doesn't wave. Sometime after one year he would sometimes wave when people were gone, but never while they were leaving.

 

He likes to line up his toys (love cars and trains and trailers), and is always looking at the little peices on them (the wheels, lights etc).

He loves things that spin. Fans, the washing machine (front loader), the loading icon on the computer. And loves drawing circles.

He's also gone through many obessive stages with these things. He used to be so obessed with fans. Constantly looking at them, talking about them. He would notice them everywhere we went. He still talks about the fan when we go to bed at night. So far he's been obessed with fans, lights, washing machines, light switches/power points, and now spiders.

 

We went through a horrible stage where he wouldn't poo. He has been out of nappies since 18mo or so, but at around 28mo he stopped pooing. He went 10 days at one point. He would be screaming and crying in pain, and I would ask him if he needed to poo and he would scream "No! No Poo! Cold!!" Over and over. It was heartbraking. This went on for about 3mo. Now he goes to the toilet fine.

 

He usually takes 1-2 hours to warm up when we go out, until he's comfortable to play. But once he gets comfortable he's very happy and social. He's play, talk, run around with other children (although only those he sees regularly)

He will happily play and interact with adults if he seems them regularly and they let him approach them, rather than them trying to play with him.

He also does pretend play. He likes playing with playdough, always making trucks and trailers) And sometime he pretends to make tea.

 

Some days I think I'm crazy for thinking there's something going on with him because he's happy, social, compliant and great to be around, but there are so many days that I feel as though I never put him down and am constantly walking on eggshells. Where his tantrums never seem to end and he chases me out of the room screaming and trying to bite me. During one tantrums at around 2yrs, he was screaming and so out of control, he just started frantically climbing the bookshelf and fell off backwards, still screaming. He hits his head of the floors, with his hands etc.

 

Sigh. He's such a wonderful, sweet, beautiful little boy. I just don't know.

 

Does anyone have any thoughts? Am I overreacting? Am I just really no good at coping with normal 2-3yr old behaviour?

Thank you.

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#2 of 30 Old 10-28-2011, 06:37 PM
 
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I only have 1 sec to post but will come back and fill in. I do want to tell you that you should have him evaluated asap. I have 3 kiddos on the autism spectrum, and my dh has aspergers. I see all those types of things in my house from my kiddos....


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#3 of 30 Old 10-28-2011, 06:41 PM
 
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Any time a mother feels something isn't right is a good time to look into things.  Some of what you described would concern me, too.  Your son is young, so it's so hard to know what's developmental and what could be a problem, and all I can go by is what you wrote.  But I don't think from your description that you have any reason to believe you are being "crappy" at dealing with your child, and there's nothing wrong with going on your gut and following up on a concern.  If you're wrong, you'll just feel a little silly, but if you were right and didn't follow up on it, you'd probably feel bad you hadn't.


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#4 of 30 Old 10-28-2011, 11:20 PM - Thread Starter
 
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Thank you both so much for your replies.

 

MommyKelly, if you do get time, I would love if you came back to write more.

I also wanted to add, we're on our 4th week of Gluten/Casein free diet, and 2nd week of low Sals/Amine/Glutamate diet. Since we started he's finally stopped insisting on wearing long sleeves, hats and pants when it's warm (before he would be bright red, and sweating but would refuse to wear shorts,tshirts etc). He's also happy to go without shoes sometimes, and after almost a year where he would adamantly refuse going near the bath/shower, he's happily getting in again.

But, he's very hyperactive, quick to get upset, frustrated, needing to be held all the time, has little concentration.

 

I also didn't mention before, but he also used to be incredibly scared of the fireplace and washing machine. Clinging to me when we were near them, crying. And when he was about 15mo, we had 3 or 4 episodes of him waking in the night screaming, crying "Door! Door!" But having the door opened or closed didn't have any effect. I feel as though he was having night terrors.

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#5 of 30 Old 10-29-2011, 03:17 AM
 
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You're definitely describing some sensory issues.  We had similar issues with washing machines, kitchen tools, etc, with my DS who is on the spectrum.  Also with the obsessiveness and need for routine.  The reason I was being general about just following on your gut and getting the evaluation rather than comparing your post to my child or what this could be is that I work with special needs kids and the range of development and behavior for both NT and SN kids is enormous at your son's age.  And some kids (like my son. who is now 11) don't seem to have anything wrong as toddlers (my work place at the time had an on site SLP who worked in pre screening for ASD, and she saw him in play group regularly, and saw no concerns), while others seem very "off" at that age and it irons out.  That's why a professional evaluation matters so much.  It's too hard to work out these idiosyncrasies without professional involvement.  Also keep in mind that if/when  (I hope when) you get an evaluation, it's often far from a done deal.  You could start with a "working" diagnoses, or a diagnoses could evolve into something related but new.  That's all OK.  The point is that getting an evaluation now can open up doors to getting your son any help he needs, regardless of what the diagnoses is or if you are told anything conclusive right away.


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#6 of 30 Old 10-29-2011, 03:30 AM - Thread Starter
 
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Thank you so much for coming back to reply further, FarmerBeth.

I guess I've been somewhat anxious to take him to see someone, in case I'm completely overreacting. I don't want to have to put him through the whole proocess of assessment if he doesn't need it, you know?

 

At the moment I do feel quite convinced there is something more going on with him that just 'typical toddler behaviour'. And would like to take him to see someone. Would it be better to take him to a pedatrition or occupational therapist? No one our family has been sick enough to need a doctor since the boys were born, so we don't have a family doctor to take him to.

 

I'm just feeling so overwhelmed at the moment. I thought things were improving, but now they seem to be getting worse. He's so intense and I'm having a ahrd time parenting in the best and most respectful way to him :(

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#7 of 30 Old 10-29-2011, 07:15 AM
 
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I don't know your location to know what resources are available (although.  I'm in Canada, so  at least the cost of the assessments was covered.  We had the best luck with a multi-disciplinary neuropediatric team.  DS saw a pediatrician, a clinical psychologist with a specialty in autism spectrum disorders, an occupational therapist and an SLP (to assess pragmatic language).  I know that sounds big and confusing, but we had a lot more success with an integrated model.  We had earlier assessments with just a pediatrician (which didn't help quite as much) and with a doctorate in clinical psychology and and SLP.  The latter two were able to pin down strengths and weaknesses and make useful suggestions.  We got by on the initial diagnoses of non verbal learning disability with OCD, anxiety and ADHD for a long time, so it's OK with me that the original diagnoses ended up not quite fitting and was amended this year to autism spectrum disorder (with a very Aspererger's look to it) this year.  It was the integrated approach that weeded out the route cause of the group of behaviors.  Keep in mind that if it turns out your child might be on the spectrum, that with a very verbal child like you're describing, it may be awhile to get a very definitive diagnoses.

 

Take it easy on yourself about how you're parenting him.  Intense children are trickier to parent, whatever the cause.  Really make sure to give yourself time for yourself!


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#8 of 30 Old 10-29-2011, 11:55 AM
 
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Quote:
Originally Posted by Eloisa View Post

I guess I've been somewhat anxious to take him to see someone, in case I'm completely overreacting. I don't want to have to put him through the whole proocess of assessment if he doesn't need it, you know?


 

actually, my DD enjoyed her assessment process. I won't skip it because of fear that it will be unpleasant for him.

 

It is difficult to figure out where to start and who to call. A general doctor really doesn't have the training and background. Farmer Beth's post is good (as always!) but if you are overwhelmed and confused about where to start, a Developmental Pediatrician could be a starting place. They only deal with developmental issues, and could help figure out what other specialist would make sense for your little guy.

 

I'll warn you -- often there are wait lists. This process can take away. And sometimes a parent gets in but finds more questions than answers. I do see flags in your post that starting the process makes sense because with more information, we can better parent our quirky kids, find them educational situations that work for them, etc., but it's seldom clear cut, simple, or quick.


but everything has pros and cons  shrug.gif

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#9 of 30 Old 10-29-2011, 04:03 PM
 
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Some of what you are saying reminds me of my son who is 5. He was an intense baby- but I was a doting mom so he was usually happy. It wasn't until age 3 his behavior began to turn for the worse and it is at its absolute worse at age  5 just as he started Kindergarten. We did not have bathroom issues but fans, lights, helium balloons and washing machines for a long time. Now it is rides, hula hoops and things that spin or allow him to spin. And he can swing for hours. He does a lot of lining up things and sorting. He is highly imaginative and makes up games with objects and rules to the games. He sorts things by color, or other category that he makes up. He talks non stop to himself (in play) or anyone around him.  He loves other kids even ones he does not know but  can be very defiant with adults and sometimes aggressive. The first thing his teacher told me was that he had difficulty with transitions. We have issues in the morning- they have evolved over the years . He has to have certain things done- and is either irritable or overly silly and hyper in the morning. This has eased up as he has gotten older. He is a little more flexible now. Tantrums are still horrible and more annoying as he is much older now and it is obvious he shouldn't still be acting like a 2 year old. He becomes upset over the most trivial things. After driving myself crazy with research and wondering I finally just asked my pediatrician if these things were normal or not. He felt that my son was showing signs of ADHD so we did an eval and I handed out checklists to all of his teachers and did one myself. He scored in the range for ADHD. I was actually surprised at first as I didn't think some of that type of behavior could be ADHD but apparently low frustration and tantrums and sensory issues and being stuck on routines are ADHD symptoms.

 

I would not be afraid to get him evaluated. You don't even have to agree with a final result. But it helps to have some insight into these concerns and maybe put a name to the behaviors. For me, I am able to now look at some of my son's behavior as him not being able to control it or realizing he is reacting to the sensory situation around him has helped me not to take his behavior so personally and not get as upset with him as often. Best wishes and remember that all kids act crazy and intense and have oddities so not everything is a red flag for a disorder. It is when it becomes an issue that negatively affects your child's life, like in forming relationships or being able to function at school or away from you. My son is already reading but refusing to do work, getting frustrated and crying and screaming at school, so that is why we got him evaluated. I am using meds for him because his behavior had reached an extreme where I felt he was unhappy much of the time. Now we are seeing some improvement over the last month.

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#10 of 30 Old 10-30-2011, 09:10 PM - Thread Starter
 
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Thank you again for your replies. It's really given me some better perspective and I've booked him in to see an OT tomorrow morning.

I'm really nervous..

 

H2H, I started doing some reading on ADHD after reading your post and I'm surprised at how much that sounds like him! I never even thought of ADHD before. I really hoping seeing the OT can shed some light of what's going on.

 

Do other people find the severity of their childrens behaviour wax and wane? Sometimes we have days were I think I must be crazy thinking he might have Aspergers and other days I'm it's so bad I just know there's something going on..

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#11 of 30 Old 10-31-2011, 04:30 AM
 
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Originally Posted by Eloisa View Post

Thank you again for your replies. It's really given me some better perspective and I've booked him in to see an OT tomorrow morning.

I'm really nervous..

 

H2H, I started doing some reading on ADHD after reading your post and I'm surprised at how much that sounds like him! I never even thought of ADHD before. I really hoping seeing the OT can shed some light of what's going on.

 

Do other people find the severity of their childrens behaviour wax and wane? Sometimes we have days were I think I must be crazy thinking he might have Aspergers and other days I'm it's so bad I just know there's something going on..


 

I definitely see this with my son, and if you read posts throughout the special needs boards you'll see this is true for many families.  Different stressors, like changes in routine or even season, starting something new, feeling tired or a little sick, for some people even foods (not true in our case, but it seems to happen to some) can effect behaviors.

 

I hope you get some good help from OT.  It was OT that coordinated further evaluation for us, and the OT was really good at weeding out what sorts of sensory issues indicated risk for certain disorders.  She then coordinated assessment with the developmental pediatrician and the psychologist for us.  Also, we got some great immediate feedback about handling sensory issues.

 

About the ADHD.  I'd be really cautious to make sure you get an assessment by a developmental pediatrician or a clinical psychologist rather than a generalized pediatrician.  We were down this road, and at this point we actually have an overturned diagnoses and most of practitioners working with our son don't think he's ever had ADHD.  In boys, ADHD and Asperger's can often go together.  Also, in some cases (our son is one such) boys handle anxiety and obsession in a fidgety, or hyperfocused on an issue not at hand kind of way that can mimic ADHD.  In our case, medical treatment for ADHD showed marginal improvement, and only with a non stimulant med, which was also an indicator something wasn't quite right in the diagnoses.  We had immediate improvement in "ADHD" symptoms with cognitive therapy for anxiety, and this year, as it became necessary, with medication for anxiety/obsessing.  General pediatricians tend to be more familiar with ADHD than ASD, and don't always have the background to sort this out.  Your son very well could have either or both or neither condition, and with diagnoses based on a behavioral checklist (this is really the only way to diagnose ADHD, there isn't even a structured observation model for it) you really need a practitioner trained to sort out causes for behavior.


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#12 of 30 Old 10-31-2011, 11:33 AM
 
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I have ADHD and really do none of these types of things. My Dh was mis dx his entire life. The main one being with ADHD. We now know he has Aspergers. 

Some days are better then others for everyone, ASD kiddos included. I have had people ask me "if I am sure my ds has autism" . Well they see him on a good day. Good days look better for and to everyone :)

 

I often have newly dx parents call me. I tell them it is not the end of the world. Your child is still the same "them" as they were before the dx. Just now they have something on a piece of paper that will open doors to them getting help to be the best they, they can be. It also helps us parents understand what the heck is going sometimes a little better. But I also suggest everyone throw themselves a little pity party (NOT around their child) Cry, be angry, be whatever but get it out, get over it, and start to move forward.
 

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Thank you again for your replies. It's really given me some better perspective and I've booked him in to see an OT tomorrow morning.

I'm really nervous..

 

H2H, I started doing some reading on ADHD after reading your post and I'm surprised at how much that sounds like him! I never even thought of ADHD before. I really hoping seeing the OT can shed some light of what's going on.

 

Do other people find the severity of their childrens behaviour wax and wane? Sometimes we have days were I think I must be crazy thinking he might have Aspergers and other days I'm it's so bad I just know there's something going on..



 


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#13 of 30 Old 11-01-2011, 03:28 PM - Thread Starter
 
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We went to see the OT yesterday who has recommended a developmental paed who specialises in ASD. Her opinion was that it wouldn't take long to get a diagnosis for him, considering his behaviour yesterday, body language and information we gave.

 

In one way I feel relieved because it has reinforced what I was thinking. I knew something was going on, and having a name for it means I can do better to parent him, to understand him. But on the other side, I'm starting to struggle with him being labled.

 

Anyway, we wont get to see the paed for a few months, so I'll see how we go after that.

 

Thank you so much for all your replies, advice and support.

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#14 of 30 Old 11-01-2011, 08:05 PM
 
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Thanks so much for the update!  I'm glad you were able to get some direction.

 

I worried so much about the label, too, and sometimes I still do.  I had this irrational panic this year because the diagnoses was on the list of conditions the school asked to get checked off on the enrolement.  It was so silly, because they already know and work with my son, he was obviously the same boy entering school the this fall as he was when he left on summer vacation.  It was seeing it in print that bugged me. 

 

But really, the label has helped more than hindered so far.  Everyone knew something was up without the label, and it really helped them have a name to what was going on and better resources to understand it.  More importantly, my son is feeling more in control with a name for what's going on for him and a direction to turn to if he's looking for answers.  It also helped him connect with other people on the spectrum.  He has made one good friend from his social skills class, and he found out that he had the same diagnoses as an adult on the spectrum that he looks up to. He was able to say, "Gee, W- has the same thing, and he's just fine!  He likes his job and he's nice to be around".  Without the label he couldn't have made that connection between having a challenge and still being able to obtain what you want.  Right now, your son is young and the label is more about how you and others see it, but as he grows the label may be a tool for his own understanding.

 

Good luck to you.  I hope it all goes well for you with the evaluation.


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#15 of 30 Old 11-27-2011, 09:21 PM - Thread Starter
 
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Waiting for our first appointment with a developmental peadiatrition, then a speech therapist and a clinical psychologist. To be honest, I'm feeling really nervous. Charlie's never even been to the doctor until now. We're so out of the system, and very 'alternative'... Sigh.

He's recently started walking in a strange way. Sort of on his tips toes, but also landing hard on a flat food. And he's becoming less social. Having friends over and he doesn't want to play with the children (who he's known since he was 6mo), instead preferring to watching his DVD on trains. He's also very restless and upset in the beginning of the night. Lots of patting to sleep again, and then wakinng frequently, upset for the first few hours.

 

I'm having a hard time about it to. I'm not entirely sure why. I guess I just can't help but worry.

 

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#16 of 30 Old 11-27-2011, 10:03 PM
 
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We just finished the assessment process with our 2 yo.  I have to say many of the things you mentioned were questions we were asked and/or things that my DS does.  We did walk away with an ASD diagnosis. 

 

I just wanted to let you know that the assessment process is not scary (to the kidlet - it can be really scary to the parents).  Every single one of our assessments and therapy sessions so far has involved the professional getting down on his level and playing with toys with him, or giving him toys and observing his play.  They really do their best to not upset the kids, since that makes the whole thing last longer, and can skew the results.  At no time was my son out of my sight, or forced to do anything he didn't want to do (except give back the toys, which he has difficulty with). 

 

The unknown can be scary, but honestly, after 2 years of dealing with this intense child, having a diagnosis (even if it changes later) and knowing that these issues aren't all in my mind or even all my horrible parenting is such a relief in some ways. 

 

I hope that helps - just thought you sounded like you could use a bit of encouragement. 

 

Oh, and we're not doctor people either, I think DS has seen the ped maybe 4 times in 2 years.  But he's seen 7 different professionals (drs, phds, therapists, etc.) in the last 3 mos.  It really hasn't phased him. 


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#17 of 30 Old 11-28-2011, 02:34 AM - Thread Starter
 
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Thank you so much for your reply, Cristeen. It's really reassuring to hear that the assesment is not stressful for the little one.

I suppose that a large part of my fear, though, is the diagnosis, or lack thereof. If he is on the spectrum, well, it's a lot to take in for me. Do I want that label for him?

But if they say he isn't, I will feel so lost as to what is going on with him.

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#18 of 30 Old 11-28-2011, 06:42 AM
 
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Originally Posted by Eloisa View Post
Some days I think I'm crazy for thinking there's something going on with him because he's happy, social, compliant and great to be around, but there are so many days that I feel as though I never put him down and am constantly walking on eggshells....

Sigh. He's such a wonderful, sweet, beautiful little boy. I just don't know....Does anyone have any thoughts? Am I overreacting? Am I just really no good at coping with normal 2-3yr old behaviour?

 

 

This happens a lot; we felt the same way and it led to a several year delay in treatment. The 2-3yo age range is often when parents start to notice something is "off," but it can be a difficult age in general, and frequently there is a new baby and we attribute the toddlers' behavior to adjustment trouble or our ability to cope with a baby and a toddler/preschooler.

 

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We just finished the assessment process with our 2 yo.  I have to say many of the things you mentioned were questions we were asked and/or things that my DS does.  We did walk away with an ASD diagnosis. 

 

I just wanted to let you know that the assessment process is not scary (to the kidlet - it can be really scary to the parents).  Every single one of our assessments and therapy sessions so far has involved the professional getting down on his level and playing with toys with him, or giving him toys and observing his play.  They really do their best to not upset the kids, since that makes the whole thing last longer, and can skew the results.  At no time was my son out of my sight, or forced to do anything he didn't want to do (except give back the toys, which he has difficulty with). 

 

The unknown can be scary, but honestly, after 2 years of dealing with this intense child, having a diagnosis (even if it changes later) and knowing that these issues aren't all in my mind or even all my horrible parenting is such a relief in some ways. 

 

I hope that helps - just thought you sounded like you could use a bit of encouragement. 

 

Oh, and we're not doctor people either, I think DS has seen the ped maybe 4 times in 2 years.  But he's seen 7 different professionals (drs, phds, therapists, etc.) in the last 3 mos.  It really hasn't phased him. 


yeahthat.gif And my children like going to the doctor; they associate doctors with toys and lollipops lol.gif.

 

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Originally Posted by Eloisa View Post


I suppose that a large part of my fear, though, is the diagnosis, or lack thereof. If he is on the spectrum, well, it's a lot to take in for me. Do I want that label for him?

But if they say he isn't, I will feel so lost as to what is going on with him.

 

Since he's so young you may not get a definitive diagnosis (perhaps PDD_NOS vs Aspergers) but that doesn't mean you'll go away "empty-handed." A label is kind of like a container for all the symptoms--but without a particular label the symptoms are still there, they can be treated, and you'll probably do reevals in the future.
 

 


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#19 of 30 Old 11-28-2011, 12:00 PM
 
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What I was told was that at this age (2 for us), a definitive diagnosis isn't really probable.  i.e. we got a diagnosis of high functioning autism, not Aspergers.  Redefinition can be expected when they're a little bit older.  But any diagnosis at this point opens some doors.  Yes, it's scary - my DH is still having a lot of difficulty dealing with it, and it's been a few weeks for us.  But, for me, like I said above, it was a huge relief.  I've really struggled with how intense he is and I'm the one home with him every day (and expecting another).  My concerns were "did I cause this?" "am I a bad mother?" "should I be able to handle this like every other woman?" etc... to know that he is not like my friends kids (some of whom are talking in complete sentences at just over 1, when my 2 yo can barely construct a 3 word sentence), is such a huge weight off my shoulders.  Yes, I'm still home with him every day, and still having to cope with his intensity, but I know now that my issues in dealing with this behavior are not *my* issues, they're his.  (Hopefully that sentence makes sense.)

 

And, it opens doors for us.  We're scheduled to start ABA therapy this week.  When he turns 3, we'll qualify for assistance from the school district, and have the opportunity to put him into a preschool setting (which we couldn't afford otherwise), possibly with an aide.  I've been told, both by the doctor who did the assessment and friends with autistic children, to expect to see great strides occur once we start therapy with him, which would be amazing.  I know my little guy is smart, but I don't have the tools to provide him with what he needs at this point. 

 

HTH


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#20 of 30 Old 11-28-2011, 02:01 PM
 
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Originally Posted by Emmeline II View Post

 

And my children like going to the doctor; they associate doctors with toys and lollipops lol.gif.

 

 

Since he's so young you may not get a definitive diagnosis (perhaps PDD_NOS vs Aspergers) but that doesn't mean you'll go away "empty-handed." A label is kind of like a container for all the symptoms--but without a particular label the symptoms are still there, they can be treated, and you'll probably do reevals in the future.
 

 


 

My DD enjoyed her eval. It was a nice adult working with her at her level. thumb.gif

 

One thing that comes across often is that some parents seem to think that getting an eval is like getting a strep test -- the thing is going to come back positive or negative. It's just not like that. Our experience was that we got a lot of information back (all that info seemed to raise new questions) but the details were the important part *for us.*  We found out more about both her strengths and her weaknesses. It made the next few steps more clear.

 

Until someone sits down and really figures out what is going on with a child, there's no real way to address the challenges. The parent is left just grasping at straws, denying their child the experts, therapies and interventions that might be able to help them.

 

 

 


but everything has pros and cons  shrug.gif

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#21 of 30 Old 11-28-2011, 05:34 PM
 
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I have nothing useful to add. I just know how frustrating it is when you are trying to figure out what is going on with your kid. BTDT times two.


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#22 of 30 Old 11-29-2011, 12:36 PM
 
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DS looked so much like a child with Asperger's last winter that an experienced psychiatrist specializing in ASD basically diagnosed him on the spot after a two-hour interview.

After the usual round of testing it turned out he scored way below the cutoffs on the scales used to asess ASD. However, they did not really find out what was making life so difficult for him and us, except that he was very sensitive and anxious and probably gifted, all things we had known before. They had us do videotaped sessions with an OT specializing in developmental psychology who, while agreeing that he was nothing like the ASD kids whe was used to working with, felt that he might have "autistic traits", and while some of the tapes' evaluations where interesting, the whole process did not ultimately shed a lot of light on what the "real" cause of everything was. So it can happen that you walk away without the answers you were looking for. I allowed myself to simply feel relief that there was no ASD diagnosis, since it would have made mainstream schooling very difficult here (I live in Europe).

What helped, in our case, was that his behaviours appeared clearly cyclical. Things started getting better in late winter, and by spring it was clear that everyone had been barking up the wrong tree as it were.

 

Of course it also means that some of the behaviours are coming back now that christmas is approaching, but nowhere near as bad (we still don't know why). I am just much more relaxed about it knowing that it it is a phase. But if it HAD been ASD, I would have wanted to know that, too.


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#23 of 30 Old 11-30-2011, 02:44 AM - Thread Starter
 
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Tigerle, would you mind clarify a bit? What sort of behaviours was your son displaying?

 

Although on one hand, being given a diagnosis of Aspergers/PDD-NOS would be very hard for us. It's a condition that heavily affects our sons life. But on the other hand, if he does not fit into this catagory, I'm afraid I'll feel so lost as to what is going on for him. Could I have caused his behaviour?

On the whole, we thought he was improving. Happier, more relaxed, some sensory issues disappeared. But the last week or so, he's started toe walking. Tantrums are out of control. His movement and the way he holds himself has changed (very rigid, tense, straight arms and legs when I pick him up).

 

I really thank you all for being so helpful, and simply just being here to listen. I honestly thought maybe I would have felt more relaxed about this all, but having gone to the GP for a referral today, I just feel shaken. He is my baby. This is hard for me.

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Quote:
Originally Posted by Eloisa View Post

On the whole, we thought he was improving. Happier, more relaxed, some sensory issues disappeared. But the last week or so, he's started toe walking. Tantrums are out of control. His movement and the way he holds himself has changed (very rigid, tense, straight arms and legs when I pick him up).

 

.....I honestly thought maybe I would have felt more relaxed about this all, but having gone to the GP for a referral today, I just feel shaken. He is my baby. This is hard for me.


 

grouphug.gif  It is hard. It's a lot to take in. Eventually, most of us find a way to make peace with this, but it's a process.

 

For my DD, the degree to which her sensory issues are being appropriately met has a massive impact on how neuro typical she seems.

 

Also, there is a theory of child development that says that as kids acquire new skills, they go through a period of "disequilibrium," then they truly master the new level and go back to a period of equilibrium, so that childhood is a flux of periods of equilibrium and disequilibrium. I believe (and this is just my theory, not an expert opinion) that sometimes when my child is falling apart at the seams, that this is what "disequilibrium" looks like for her. Disequilibrium for a child even barely on the spectrum is a real mess. But for those same kids, equilibrium looks almost completely normal.

 

Like I said -- this is just my pet theory, and I was an English major. winky.gif

 

But for us, when things are going rough with her, my first action is to work on sensory stuff and review everything in her life, and my second action is to hold on to hope.

 


but everything has pros and cons  shrug.gif

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#25 of 30 Old 11-30-2011, 06:01 AM
 
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I think my 4yo son has Aspergers, but we're waiting until he's older to get an evaluation.  That's just because his dad (my ex) is completely in denial.  When I tried to bring it up a couple years ago he freaked out and threatened me with violence.  My ex just went frantic and out of his mind (stalking me, borrowed a gun).  Now I'm scared to talk to him about it again, but I still see Aspergers traits in our son.  We have to wait until it shows up enough at school that a teacher brings it up as a possibility. 

 

If DS has it, it will come out eventually.  It doesn't bother me at all, because I have Aspergers or PDD-NOS myself.  I know who DS is.  He is a whole person, just as I am.  He is brilliant, funny, curious, and self-motivated.  He has some trouble at school staying with the group.  He will just go off on his own to play with something when he is supposed to be at circle time.  The way I see it, he just has his own agenda for how he spends his time.  Not entirely a bad thing.  He wants to do things that are more interesting than what the group is doing.  He has sensory things, trouble with transitions, talks incessantly regardless if anyone is listening, interrupts, tantrums, repeats meaningless movie quotes.  And something I noticed lately is that he asks to be picked up, and when I pick him up, he doesn't snuggle in and cling to me.  He's awkward and hard to hold - leaves his legs dangling straight down, or curls his legs up and knees me in the belly each time.  He wanted to snuggle with me on the couch yesterday, but kept elbowing me and headbutted me in the mouth pretty hard on accident.  I think he kind of lacks a sense of the other person. 

 

DS is who he is, and I love every part of him.  <3 


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#26 of 30 Old 11-30-2011, 08:18 AM
 
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Quote:
Originally Posted by Eloisa View Post

Tigerle, would you mind clarify a bit? What sort of behaviours was your son displaying?

 

This is one of the threads I had about it - the input I got was extremely helpful for me, maybe it will be helpful for you too...

http://www.mothering.com/community/t/1297674/new-update-with-dx-or-not-differentiating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice

edt to add the cross-post, great stuff in there too.

http://www.mothering.com/community/t/1297676/differentating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice#post_16258925

I do not post that often in the special needs forum, because without a diagnosis, I feel unsure whether I "belong" or whether its inappropriate, hope you kwim. I know that's proabably ridiculous, it's just not like things are always that clear-cut...

It's okay to feel overwhelmed and helpless and conflicted.


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#27 of 30 Old 12-02-2011, 05:13 PM - Thread Starter
 
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Thanks for the links, Tigerle :)

I am lucky that DH is agreeable in getting DS assessed. He agrees that there are definitely sensory and social issues for DS. The trouble I'm having is that without a diagnosis, if I discuss different ways to handle DS, and give information about how DS may view the world in a different way, it also comes back to "What if?" What if he isn't on the spectrum? I'm so sure he is. But I can't diagnose him. We don't see the Paed for months.

 

I'm starting to worry that his symptoms are getting more intense. He's been getting really stressed out when we go to a playground with lots of kids around. Yesterday we had the monthly babywearing meet I organise. The park was empty, apart from our group of about 7-8 women and their kids. 3 women and their children, we knew, and the rest were new (but there were only 2-3 unknown toddlers) And the whole time he kept asking me to come with him, to go near the playground, get a toy, go near the fountain etc etc. He didn't play with the other children at all, and had multiple very intense meltdowns. But as soon as we got home, he put of "Trains", and was totally quiet, happy.
I've also noticed, more and more recently, that he's chewing on his hands, licking his toys. He makes this weird, open mouthed (kind of 'surprised' look, I suppose. Without the wide eyes), whenever an adult talks to him. Or turns and looks from a side angle.

 

I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?

Also, I've been wondering about questions. I've noticed other children around his age (some older, some younger), asking questions like "Why doesn't he want to play with me?" Will you do x, y z?" "Why is he doing that?"
Charlie's questions consist of "Where's Daddy, Mummy etc?" (This is often repeated over and over ever once answered, and sometimes asked with Daddy is standing next to him) "What you doing?" (Although he doesn't appear interested in the answer) and "Where's that come from?" Asked in reference to has particular interest. A part on one of his cars, a string hanging off something (he's quite interested in strings), electrical cords (always been interested in anything with a cord). But definitely nothing like "Why doesn't he/she want to play with me?"

 

I think I must be over analyzing. Sigh. Thanks for listening all.

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Quote:
Originally Posted by Eloisa View Post
I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?



Pretend/imaginary play is only one possible indicator.  The way the assessor explained it to me was that there are 3 categories they look at, and within each category there are 4 items.  That in order to be "on the spectrum", they need to have at least 2 items in each category.  But each item is a broad range of things, it's not a specific.  She said she's been assessing kids for over 10 years, and she'd never seen 2 kids with the same set of items, or scoring in the same way.  I know she indicated that my DS' obsession with telephones would be considered pretend play/imagination, yet she still gave us an ASD diagnosis. 

 

HTH


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#29 of 30 Old 12-02-2011, 07:10 PM
 
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Quote:
Originally Posted by Eloisa View Post

 

I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?
 


No, it wouldn't.  I work on an evaluation team for children with ASDs and this type of play is extremely common among children with ASDs.  (and in fact that type of object play is commonly seen when kids are getting an ADOS) The type of pretend play that you don't typically see if the kind of shared imagination, reciprical play between 2 people.  At 3, kids are just starting to be able to play with someone else in a way that incorporates both of their ideas because they are existing in a kind of imaginative world that they are both referencing. 

 

So one kid will say "I'll be the firefighter" and the other kid will say "Ok, I'll be the lady trying to get rescued" (or, they don't even say this out loud, and just start doing it) and BOTH kids are able to mold/shift/change the scene as it goes along and both are able to follow the new aspects and incorporate it into what they are playing. 

 

There were many points in your first post that made me think as a parent I would want to start the eval process in order to get more information, as scary as that sounds.  Yes, you listed many things that are typical of kids with autism, but no one can make a DX online and there are so many nuances to behaviors.  But the right kind of early intervention for kids at your son's age can make a WORLD of a difference in a crucial time for the brain to learn about social interactions.  It does not do a child any advantage to wait until they miss more and more social opportunities to learn from their peers.  You did the right thing, good luck!  

 

 

 

 

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#30 of 30 Old 12-05-2011, 01:01 PM - Thread Starter
 
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Thank you, everyone, again! Especially Altair. It's been so helpful for me having here to come and write out my concerns.

 

We're still waiting for confirmation of his appointment with the ped. But that should be in Feb, I'll do my best to find time and update properly later. Thank you all so much for your kinds words and support.

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