Very anxious about upcoming evaluations UPDATE: Diagnosis and a diagnostic classroom

[waiting2bemommy]

Tomorrow DP and I have an appt with a psychologist who specializes in ADHD, autism/PDD, and anxiety in children. Clearly ds is anxious--that much is obvious and very understandable since he has gone through a lot of instability and upheaval in his life. On the one hand, I'd like to say that all of his other behaviors are related to the upheavals (the latest thing for him is that at Christmas time we cut off my parents, who he was extremely close to, and that has been traumatic for him) and that as we settle back down and get on with life, those issues will resolve themselves. But it is affecting our whole family's quality of life.

He is becoming increasingly inflexible (again, I understand that this stems from being disoriented and confused about all the change he cannot control). Instead of eating his food, he lines up his green beans and says they are cars. If it's broccoli, they are trees and he makes them fight with each other. He is not a neat kid at all, but he loses his mind if the tag on his hirt touches him wrong or if you try to get him to eat bbq chicken with his hands. Yet, he rolls around in mud puddles (and then freaks out that he's all wet.) Where he used to hold nice, calm conversation with me at 18 months old, now his conversations are more---idk, abrupt, punctuated with weird remarks or noises, and he never seems to make any sense anymore. He has a terrific vocabulary, but to talk to him now you wouldn't know it.

Also, he has taken to repeating everything instead of answering the question. He has always, since he started talking, had trouble answering questions, but I guess now that he's older it is more pronounced because most kids his age can handle the give and take of a conversation. He used to be "ahead" language wise and now I feel like he is behind others. a year ago a conversation would have been, "how old are you?" "I'm 2 and a half." "What's you name?" "Caleb." "What are you doing with your mommy today? "Today we're going to the store to get tomatoes. They're really, really red and juicy!"

Now it goes, "What's your nam?" "What's YOUR name?" "My name is Mary. Whats your name?" "What's my name? My name? um....." looks around as if lost. Then falls to the floor and proceeds to roll around while reciting lines verbatim from the movie "Cars." His obssession is slowly shifting to toy story, apparently so occasionally we are treated to lines from that instead. Last week he climbed to the top of a very high (8+ feet) playground structure and jumped off with no apparent fear or realization of the danger. Luckily DP had the presenc of mind to catch him...I was so stunned I just stood there uselessly. Yet the day before at the very same park, he refused to climb a 2 ft toddler climbing wall because he was scared he would fall. I never know what to expect.

I took him to story time today and he was chanting tbe lines from cars louder than they poor woman who was trying to read a book to the class. He rolled around on the floor, picked up little pieces of paper adn stuffed them wildly into his mouth, punched another little boy, and tried to sit in a little girl's lap.He knew all the answers and yelled them out but when the teacher praised him and asked him a question directly, he just stuck his fingers in his mouth and said "i'm not a Mack Truck! Where's the interstate?" over and over. He stays awake for hours eomtimes at night just playing with his fingers in the air.

I'm so scared of the appt tomorrow. I know something is not right, but people keep telling me he is just a typical hyper 3 yr old or, even worse, that he is just undisciplined and needs to be spanked more. I try to deal with him with patience and love. I don't think he can help much of his behavior. It certainly isn't his fault that he has had to experience so much upheaval. If anyone needs a "beatdown" , it's me for putting him through it! And anyway DP tends to be more of a disciplinarian than I am so we balance each other out.

I guess this is mostly a vent. I woudl love to hear from anyone who has been through this. we have two appts tomorrow...a psych appt in the AM and and a sensory/dev. ped eval in the PM. Next week he goes to be evaluated for special ed preschool. i"m not ure if he'll qualify..I've started videotaping some of his ebhavior on my cellphone in case he happens to be having a fabulous day and they think I'm making it up or something.

[Tigerle]

Tomorrow will be the first round of testing in the diagnostic process for DS - the psych wants to evaluate for Aspergers. DS's issues appear somewhat milder, and he has been so much better for weeks so on going in for our first consultation I was wondering whether they'd take me seriously, or thought I was That Mom, and I really meant to find out whether we should look at ADHD or sensory issues, and then wham. I was thrown for a loop - everyone here has been so helpful giving advice about the process, though. With all the information people have given me here and over at the Gifted forum, I have been rather reassured that there is a lot of objectivity in the process, and whether a child has a good or bad day doesn't make all that much of a difference.

However, tomorrow's test will be an IQ test, and with a 4yo that means we may get answers or we may not - in this case, what kind of day he has does make a difference! And it is mostly out of my hands. I have tried to gently prepare DS, to give him confidence and encourage him to participate well without putting him under undue pressure, telling him he'll enjoy it - but I don't know the tester, dont know how well he'll relate to her, how well he decides to participate, how well she knows her stuff. The assistant who called to set up the appointment said Wisc, which is confusing as at his age, they shouold be using the Wppsi, so this is one more thing that I have been worrying about...I hope I remain calm and focused tomorrow to help DS feel calm and focused too! 

I am still hoping our issues may be a combination of giftedness, sensory issues, anxiety, a difficult temperament and a bad fit at preschool, but the whole list of things together sort of turns round and bites me in the face as Aspergers. And I am unsure what to hope for - I want to find out and don't at the same time.

Please stop beating yourself up! You're his mom. If you feel that he can't help most of his behaviours, that is probably a sound instinct. It's not your fault, and they may be able to help.

[waiting2bemommy]

Thanks so much for sharing your story! Where did you get information about the various screening tools and tests? I've tried to look online but I can't seem to find anything other than the basic "red flags" type of stuff. I deal with stressful situations by reading and learning as much as I can, and it's been frustrating me that I can't seem to find much iformation that seems to pertain to ds. Everything seems to be geared toward kids who have much more overt symptoms of autism or delay. It has actually amde me question, also, if I was That Mom. lol.

[Emmeline II]

Originally Posted by waiting2bemommy I'm so scared of the appt tomorrow. I know something is not right, but people keep telling me he is just a typical hyper 3 yr old or, even worse, that he is just undisciplined and needs to be spanked more. I try to deal with him with patience and love. I don't think he can help much of his behavior.

I guess this is mostly a vent. I woudl love to hear from anyone who has been through this. we have two appts tomorrow...a psych appt in the AM and and a sensory/dev. ped eval in the PM. Next week he goes to be evaluated for special ed preschool. i"m not ure if he'll qualify..I've started videotaping some of his ebhavior on my cellphone in case he happens to be having a fabulous day and they think I'm making it up or something.

If you get a "your kid is fine, something's wrong with you" attitude then you have a crappy evaluator. A good one will be able to see through a "good day" and will be interested in your videos and list of behaviors/incidents. And to the "undisciplined and needs to be spanked more"; they really have no idea. An "advantage" to getting ds help later is that we had dd for comparison--"if it is our fault why is dd fine?".

We just did the dev. ped/speech/psych-IQ appointment yesterday and get the evaluation tomorrow; ds is 7 (next month).

Ds' appointment was from 9-1.

1.       I did an intake summary with Dr. in “playroom” for 10-15min. (room with table, bed sized bench, toys and a one-way mirror).

2.       Filled in more surveys (filled out a couple extensive surveys pre-appt) while the Dr. did some sort of table flip chart with ds; then followed the speech evaluator, testing ds in the playroom.

3.       Did history of ds with Dr., from pregnancy to present, in exam room.

4.       Dr. did physical with ds, then health and family history with me in exam room.

5.       Ds went to do psychological and IQ testing in playroom while…

6.       I filled in more surveys with social worker in exam room.

The official schedule was:

09:00-11:00      MD                            Medical/physical

                       MA CCC-SLP             Speech/Language

11:00-1:00        PhD                          Cognitive/achievement

                       LMSW                       Psychosocial/adaptive

There was also a student there observing.

The doctor said that she could see why I was concerned about Asperger's (ds currently has an ADHD/w disturbance of emotion and conduct diagnosis, from his psych) but also said that ds was on the borderline (regarding age) for diagnosis---that was about the extent of the feedback until tomorrow. I was so tired after that appointment; Ds' therapy appointments tend to wipe me out too, though I usually only talk briefly with the therapist then sit in the waiting room with dd.

[waiting2bemommy]

Originally Posted by Emmeline II 

If you get a "your kid is fine, something's wrong with you" attitude then you have a crappy evaluator. A good one will be able to see through a "good day" and will be interested in your videos and list of behaviors/incidents. And to the "undisciplined and needs to be spanked more"; they really have no idea. An "advantage" to getting ds help later is that we had dd for comparison--"if it is our fault why is dd fine?".

We just did the dev. ped/speech/psych-IQ appointment yesterday and get the evaluation tomorrow; ds is 7 (next month).

Ds' appointment was from 9-1.

1.       I did an intake summary with Dr. in “playroom” for 10-15min. (room with table, bed sized bench, toys and a one-way mirror).

2.       Filled in more surveys (filled out a couple extensive surveys pre-appt) while the Dr. did some sort of table flip chart with ds; then followed the speech evaluator, testing ds in the playroom.

3.       Did history of ds with Dr., from pregnancy to present, in exam room.

4.       Dr. did physical with ds, then health and family history with me in exam room.

5.       Ds went to do psychological and IQ testing in playroom while…

6.       I filled in more surveys with social worker in exam room.

The official schedule was:

09:00-11:00      MD                            Medical/physical

                       MA CCC-SLP             Speech/Language

11:00-1:00        PhD                          Cognitive/achievement

                       LMSW                       Psychosocial/adaptive

There was also a student there observing.

The doctor said that she could see why I was concerned about Asperger's (ds currently has an ADHD/w disturbance of emotion and conduct diagnosis, from his psych) but also said that ds was on the borderline (regarding age) for diagnosis---that was about the extent of the feedback until tomorrow. I was so tired after that appointment; Ds' therapy appointments tend to wipe me out too, though I usually only talk briefly with the therapist then sit in the waiting room with dd.

 Wow, that does sound intense. They didn't tell me how long tomorrow's AM appt woul be but it i supposed to be an intial consultation without ds there (just parents and doctor), although we don't have anyone willing or able to watch him (gee, I wonder why? lol) so he will have to tag along. Plus we will have dd who is a holy terror (and I do mean that affectionately, it's just that she can destroy an entire room in 60 seconds flat); between ds rolling on the floor between our legs reciting movie lines, and dd screeching nonstop and pulling down everything within reach we are quite the three ring circus.

I guess I am also jaded of the response I will get because I ued to work as a TA in a self-contained classroom. Most of the kids had very visible differences and clearly needed to be there yet I heard a LOT of "pushy mom" type complaints and that was for children who had crystal clear disabilities and diagnoses. I would love for ds to be able to go to preschool 5 days a week; that would be a godsend because he is really intense and the break would do wonders for all of us. However I worry about the lasting stigma of having a child, particularly a boy, especially a minority boy, being labeled with any kind of emotional or behavioral problem. IME those types of labels follow you for a very, very long time and that scares me.

[Emmeline II]

Originally Posted by waiting2bemommy I guess I am also jaded of the response I will get because I ued to work as a TA in a self-contained classroom. Most of the kids had very visible differences and clearly needed to be there yet I heard a LOT of "pushy mom" type complaints and that was for children who had crystal clear disabilities and diagnoses. I would love for ds to be able to go to preschool 5 days a week; that would be a godsend because he is really intense and the break would do wonders for all of us. However I worry about the lasting stigma of having a child, particularly a boy, especially a minority boy, being labeled with any kind of emotional or behavioral problem. IME those types of labels follow you for a very, very long time and that scares me.

He is going to have the problem whether or not he is labeled. IME having a label for the behavior is good because

1. a professional of some sort is saying X, so you aren't just a mom making excuses for your bad parenting
2. your child has an identifiable medical concern and isn't just a behavior problem

Before my son had a label he was "the problem child" that was always in trouble and was frequently in either ISS or suspended (in kindergarten).

[Storm Bride]

Originally Posted by waiting2bemommy 

  IME those types of labels follow you for a very, very long time and that scares me.

I'm calling my family doctor tomorrow, to set up an appointment, so that I can get a referral to a pediatrician with experience in developmental delays, special needs, etc. for ds2. This is the very first step for us (well, the second - I already talked to some special ed people at the DL program we use.) I just had the conversation about labels today. I'm worried about the label. I'm worried about dealing with medical professionals, because they've put me through hell, and I don't trust them. However, the bottom line is that with or without a label, ds2 has challenges to deal with that he can't handle on his own, and I'm really not properly equipped to deal with them, either. We need help, and the only way I can get that help is to get a diagnosis...and label. IMO, the label will follow him around, but he's better off with the label and the help, than with no label and no help.

[Linda on the move]

My DD is on the autism spectrum and has an anxiety disorder.

<<However I worry about the lasting stigma of having a child, particularly a boy, especially a minority boy, being labeled with any kind of emotional or behavioral problem.>>

If what is going on with your child is anything like my DD, then stigma isn't the problem. There really isn't a stigma to autism or anxiety. Violent behavior YES, but anxiety and autism, no stigma.

My DD has changed over the years, but having the right labels and access to accommodations makes her life so better *for her.*  It's gotten her accommodations so she could be somewhat successful at school. It means that she can be who she is and that others can understand her. The right label is a godsend.

Her last eval (she's had them at different ages) involved 2 days of testing, input from her school and therapist (cognitive behavior therapist for the anxiety), input from me, and me filling out many, many pages of forms.

Good luck!

[Tigerle]

Originally Posted by waiting2bemommy 

Thanks so much for sharing your story! Where did you get information about the various screening tools and tests?  

Here!

Check out my recent threads about it. http://www.mothering.com/community/forum/thread/1297676/differentating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice#post_16258925

http://www.mothering.com/community/forum/thread/1297674/differentiating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice#post_16266921 

People here are just wonderful!

In our case, the office assistant is certainly useless about giving this kind of information and and I wasn't up to quizzing the psych about it at the end of the consultation. I agree that there does not appear to be so much out there about the fuzzier edges of the spectrum.
 

[waiting2bemommy]

Well we went this morning and ds was in true form. The ony thing he didn't do (and I didn't expect he woud, because he wasn't famiiar enough with the professionas evauating him) was destroy anything in the offices. He rolled around on the furniture, said silly things, licked his arm compulsively, chewed on his shirt, and interrupted me nonstop. The psych sent DP and I away with an armload of papers to read about feingold diet, melatonin and other natural options. He will see us back next week to discuss the assessment forms we are having to fill out this week. He suspects Asperger's/PDD which he said is comorbid with anxiety.

The developmental ped who we saw this afternoon did a developmental assessment on him (OT is a different appt, I was mixed up!). Of course he passed with flying colors because he knows his colors/letters/numbers etc. but he didn't follow directions terribly well and was in a constant state of motion. He also chewed his shirt up during the assessment. I'll probably have to make it a pajama shirt now because the sleeves are wrecked after today. The doc was honestly not that helpful to me. She aso suggested melatonin and suggested that we consider medicating him whenever he starts back to school (he was in montessori preschool but is back at home with us for right now). I"m not willing to medicate a three year old. She told me that I am basicaly doing all the right things....responding to his needs with added sensory input (we roll down hills, wear weighted down coats with rocks in the pockets....yes, that does actualy work! and so forth), giving him physical exercise and monitoring his diet. I feel like she didn't really tel me anything I didn't already know. He is going to be starting OT next week and will probably be going every week for the forseeable future. I"m curious to see what difference that makes.

The psych guy invited us to a local autism social. He said htere would be families with kids like ds, but as bad as I need to create a support system for myself as a mom, and even though I know DP needs to be around other families with kids whose issues are like ds's I'm just not sure I'm ready for that yet. I"m not even sure that's what he has! I'm just...overwhelmed. I"m about to do the questionnaires with DP tonight becuase he's off work tonight, so that will probably push me completely over the edge.....I scanned them over and they sound a LOT like ds. Sigh.

tigerle, thanks for the link to that thread! I will read through it tonight.

The psych pointed out something that I hadn't noticed untiln today, but which was very true: ds started to have these issues right around age 2. Yet, we were relatively stable the year he was 2....yes, me moved a couple of times, but I was home for almost 6 months and we actually were doing pretty well overall. If his issues were solely related to upheaval, it seems that they should have peaked at around 18 months to 2 yrs, when we had the roughtest time of things, and then gotten better after his 2nd birthday. Instead he got progressively worse. So...I just don't know what to think.

[Emmeline II]

Well, this is our evaluation follow-up.

The results (as transcribed from the Dr.’s teeny tiny handwriting)

1.      Average to high average ability (performance IQ – TONI 3 =117 > verbal SIT-R 94).

2.      Achievement commiserate with ability (WIAT II – word reading =140, reading comprehension =121, spelling =130, numerical operations =102).

One score somewhere was abnormally low; I think it was part of the verbal SIT-R, a section with “strange stories” where you identify what someone is feeling knowing that the feeling is not what they said (like a person who hates apple pies saying “thank you, it’s just what I wanted” when given an apple pie—why would they say that? because they didn’t want to hurt the giver’s feelings).

3.      Mild to moderate pragmatic language disorder.

4.      Social developmental delay; in part due to ADHD.

5.      ADHD combined.

6.      Disruptive behavior.

7.      Anxiety (performance and social anxiety)

8.      Chronic motor/vocal tics

9.      Possible CAPD.

10.  Hyperacusis/sensory concerns.

Therapy Referrals

1.      Speech therapy with attention to pragmatics.

2.      Continue CBT to address anxiety and behavior.

3.      CAPD evaluation.

4.      OT to address sensory concerns.

Regarding Asperger’s; the Dr. said that he appears to meet the criteria but that he was a little young for diagnosis and that the ADHD complicates the picture (she went into a lot more detail than that; apparently the diagnostic team spent a lot of time debating this point). We will reevaluate in a year – added maturity and addressing some of his other issues may give us a clearer picture. The appointment took about 2 hrs.

[Stephenie]

Hugs to you... this is stressful stuff.

My son is a bit older than yours and was diagnosed with Asperger's a little more than a month ago. I went back and forth on wanting to diagnose, though he had known/ diagnosed sensory issues, seizures and brain scarring from a birth injury, so labels were not new to us... but I knew deep down that if he was assessed for ASD he would be put on the spectrum. And I worried about the label. But I really see it as a tool. I know you don't want people to see your son differently etc, but the label does not change who he is, all it will do is help him to get the right services and help you to understand him better. I have so much more patience for my son than I did before the diagnosis... it's so much easier to not get frustrated by his behaviors when I know there is a concrete reason for them. We've had our own share of unstable times and I worried that those hard times or my parenting or something in my control was to blame.... that, for me was a terrible feeling and in some ways I am relieved to have this new diagnosis. I am not relieved that he faces these struggles. but now it has a name and we've been given the tools to handle it. 

Good luck with it all, I know how stressful it must be for you. You are trying to do what's best for you son, remember that. 

[waiting2bemommy]

well we went back to the psychologist and had an eval done through the school system.

Ds now has an official diagnosis of ADHD secondary to Asperger's, with sensory integration dysfunction and anxiety.

He passed the school's seech/hearing/skills eval with flying colors but that didn't examine his social skills and other Asperger's traits, so rather than screen him out of ths system (which I would have fought because I 'm at the point now where I want him to get services) they are palcing him in a diagnostic classroom for 3 weeks. The way it is structured, up to 12 children with suspected delays are placed in a classroom that is operated just like a typical preschool...circle time, activities, playtime, etc. The teacher and staff in the room are all actually professionals observing and evaluating the kids in a natural group setting. They have a social worker/psychologist, speech therapist, and so on who spend time in the room every day interacting with the kids. After 3 weeks the program is over and the kids go back to staying at home while the results are put together. Then the child is either screened out of services or found eligible for a service.

I have mixed feeligns about this. I think it's a terrific idea and a great way to get a thorough, accurate assessment of the kids. However I'm worried about the effect it will have on ds to go to school for just 3 weeks and then have to go home. He has a hard time with change. (duh, lol)

Has anyone had any experience with this type of setup? How did it go?

[Emmeline II]

I just wanted to bring up a "hearing" related issue. Though my son's actual hearing ability is normal the way he processes sound is not. The dev. ped. recommended an evaluation for CAPD.