Bittersweet Goodbye. | Autism PDD
I'm happy she will be getting all the support she needs. You are doing a
great job! Especially with that family of nay-sayers you have.
I agree that her dx's are very close to an ASD. However, that is why you
pursued these evaluations in the first place. Your child is precious no
matter what the dx She has a few developmental and behavioral issues.
She has some unique sensitivities. As long as she is getting help to help
her navigate her way through the world, it doesn't really matter what you
call it. Sometimes it's necessary to change the dx to get the right help,
sometimes it isn't.
I am glad for you that your daughter's delays don't seem nearly as severe
as you had feared. You are ALWAYS welcome here. So many SMART and
helpful folks here. Your posts have always been friendly and thoughtful,
and I have enjoyed reading about your beautiful girl. Good luck, and
don't be a stranger!
Over the past 4 years we have been on this journey I have yet found a child with the types of labels you were given that didnt eventually get the asd label in later years. It makes no sense to get a child all these labels if in the end they do get an autism label label anyway...however there is no reason whatsoever NOT to treat the symptoms of autism with or without the label...ABA, Speech, OT/PT and RDI would help her immensely no matter what they want to label her..We want you to stick with us and help in anyway we can and if our best intentions sound blunt it is only to make you stronger and hopefully more educated in the ways of some doctors tactics so you can help her best.. my lil cuz is 12 and had been labelled at 3 years old with sensory issues, ADHD, ODD and major speech delays..ect.. only to be just now diagnosed with aspergers at 12 years old!
....it is a shame~he is very smart but socially he is years behind and his mom never got him rediagnosed. He is now getting the help he should of gotten at preschool age..just an FYI to be on the alert and eyes wide open:)
Keep us posted! I would miss that sweet little smile:)
This is a club that nobody wants to join. ;
You have the love and respect of all of us parents here. You have learned, and educated, with your posts.
Thanks, as the other parents have said, "Keep in touch".
God Bless.
I second and third Elle22 & WIMomOf2's motion....
Pangle-n-Grace...feel free to return back to this message board... anytime...anywhere... I didn't want to say anything in my first post either...but I agree w/
Hey, Pangle, if Trinity has SID, I think you could benefit from at LEAST popping back in here and there ... I could leave, too, if you leave, but there is too much still to learn, here ... But if you go, bye, and I wish you all VERY WELL! Pangle, I think you should stay around as well. The more the merrier!
No seriously, I think it would be a good idea toat least check in once in a while. It is always possible that at age 2, a misdiagnosis can occur. Mixed receptive expressive language disorder - well, I guess I think that at some point the diagnosis could change. I hope for your sake and your dd's sake it doesn't. But, if it does - we are always here for support! I do mean no offense here - but when you put all those diagnoses together - it sounds like symptoms of ASD to me. I'm with bullet - did the doc say WHY they weren't diagnosing with autism? Sorry it was hard for me to read your initial post with the tiny print. My eyes are getting older like the rest of me!
*Definite speech delay, *Mixed receptive expressive language disorder, *Disruptive behavior disorder NOS, *Possible Sensory processing disorder.
She feels as of right now Trinity, though having some red flags’ she ..."Does not meet the diagnostic criteria for an Autism Spectrum Disorder. Although Trinity does exhibit significant communication difficulties and concerns, she does not exhibit other significantly interfering behaviors suggestive of this disorder in the areas of Social/Emotional functioning or behavioral functioning."... & To continue with ST and start OT. So I am relieved. I guess. A lot of I told you sos’ are coming my way... So I do want to say goodbye. I hate to bother you all with my problems that are nowhere in comparison to yours. I want to thank all of you for helping me through this long exhausting month. Especially a huge thanks to all of you that cared to send me a PM or share your personal journey with me, those that responded to all my posts and helped me get through a very scary and lonely period in my life. Regardless, and I have said this before, of the dx- Autism has touched my heart so deeply. I will remain active in learning more about it and trying to teach others as much as I can. I am returning to school this fall to get a degree in what I thought I knew but now I’m not so sure. God has a plan for everything and everyone. Maybe I am here to help others, help kids. *side note*The other day at the doc office there was an autistic boy there. He was 4, I managed to start a conversation with his mom and he came over to me sat in my lap looked and me in the eyes. She was amazed she said he hardly does that with her let alone strangers! He stayed by me almost the entire time we were waiting. I was in awe watching him. Though it may sound strange. He was the first severely autistic kid I had ever been around. He didn’t speak at all but his facial expressions said a million words. ** Maybe something in the Therap. field is my calling??? Who knows? Well Thank you all so much again.
This is bittersweet.
Good for Trinity! Best wishes to you and your beautiful little lady. Hi! Well, I'm glad you did get some answers from the specialist today, & I
Take care Pangle-n-Grace... It must have been an exhaustive month, not only physically, but also mentally, emotionally & spiritually... Trust in HIM...always... Proverbs 19:21 Many are the plans in a man's heart, BUT it is the LORD's purpose that prevails [QUOTE=Elle22] Of course I'm fairly new here, but IMHO there is no need for you to kick So True- Speech issues and sensory issues are discussed here often. Stay here and join in if you want! Thank you. Pretty much the family members who are following all this with us just say all that means shes typical of any 2 yr old. If we took any 2 yr old in they would all say that. As far as speech they think she will talk when ready, they also think i'm CRAZY to continue ST and start OT. Oh well... this time I am putting my foot down and I don't care what they say or think! She is MY daughter!! I think "others" seem to forget that! Thanks again!! Nicole, I hope you DO pop in - more often than less! An intern should not be giving a diagnosis - she is NOT qualified to do so! Did a supervisor come in and help with the evaluation? I would take this with a grain of salt. She doesn't have the experience or expertise to know whether a child is on the spectrum. Food aversions and tantrums can be typical at this age - but it depends on the level of SEVERITY. Being social does not disqualify a child from being on the spectrum. I am willing to be at least 25% of the parents on this board would classify their child as "social" in lots of ways. My ds is much more social than my dd (although she is improving) and she is NT! And I would bet over 50% of the parents would say their child is social with them - probably more. Girls present differently than boys in terms of symptoms. And kids with autism can do pretend play. Some need to be taught initial skills (like my ds). But girls are more likely to have this skill. And they are more likely to be considered social as well. I would trust your gut and definitely go to a dev ped if you can. But make sure you talk to other parents in your area (try a local support group) to find out who is the best to go to. If we had gone to the dev ped we were initially scheduled to see, my ds would still be without a diagnosis. I talked to some parents who all told me to avoid this doc and go to a different dev ped, who was very good. We went to him and he even said that 85% of dev peds would not have diagnosed my son, but he thought it important that kids get help early on. They keep saying that early intervention/help is key - but then the docs keep saying "wait and see". He didn't like that so he gave us a diagnosis. As ds has gotten older, it has in some ways become more evident that he is on the spectrum, but he has also made huge progress that I know he wouldn't have otherwise made if we hadn't gotten the diagnosis. The diagnosis opened doors for help - in terms of medical and educational services. Anyway, I hope you do come back - regardless of the label, it helps to have support! I think you are wise to continue the therapies - as long as you are getting her help, that is what matters! ~She feels as of right now Trinity, though having some red flags’ she ..."Does not meet the diagnostic criteria for an Autism Spectrum Disorder. Although Trinity does exhibit significant communication difficulties and concerns, she does not exhibit other significantly interfering behaviors suggestive of this disorder in the areas of Social/Emotional functioning or behavioral functioning."...~ ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ This is what she wrote in the Eval papers. What she said to us is in her personal opinion she is to social, though she didn't interact with the therap. at all just us...she also said she had good eye contact. She said the tantrums and food aversions are age approp. She also said that her ability to pretend play(drink from a cup and feed a bear with a spoon) also showed she didn't fall under the spectrum .I later found out she is just an intern and is there completing hours for school credit. Though I’m sure she is qualified as a therap. she said herself that she has never researched sensory issues. Her ST still feels she falls under the spectrum...but she can't call on that dx...I guess we will wait and see...she is getting as much treatment as I think she would if given the ASD dx. So we will stick with it for now. It is hard with everyone else saying she is fine. I think they really think I want her to be ASD or whatever...and that is just crazy, I just know something is not right. The therap. also says her speech regression can be explained by the birth of her baby brother...I don't know about that even her ST says no way! That even so now that he is starting to talk(mama,dada,buh-bub etc.) that it should piss her off and make her wanna talk now. I also don't know if I agree. I see the frustration in her eyes when she wants something and can't tell me what. Well I will continue ST and OT and see how it goes the next few months, I may consider an devp. ped, and just keep it to myself instead of telling the fam... I do really appreciate all of you and...and if your going to twist my arm about it,
Thanks again~Nicole J. Nicole Good luck to you. Glad you finally have a diagnosis and hope that things start looking brighter for your family in the future. Good luck to you. Sarah couldnt follow eye gaze from us..for example: If I was looking at a toy across the room and asked her what I was looking at without pointing or even if I was pointing it was very difficult for her to know what I was looking at. She also had a hard time sharing her interests in toys and bringing them to us..she does this now but not at all under age 3 ...nor did she get interested in our play when we would try to get her to join. .I never thought much about it but was told that it was a key feature of autism~total lack of joint attention
I think your precious dd could be off the spectrum but like most on board have stated..watch her (I know you will
Sarah under the age of 3 was so quiet and good that I had no clue anything other than language was an issue....at 3 years old the sx were blaring at me and everyone else. Good luck:) "Sarah couldnt follow eye gaze from us..for example: If I was looking at a toy across the room and asked her what I was looking at without pointing or even if I was pointing it was very difficult for her to know what I was looking at" Are you really supposed to be able to do that?! There is absolutely no way even now that I could see what someone was looking at if they didn't point it out. How on earth can you follow someone's gaze? Pangle, based on that last written observation, to me (based on that alone), it doesn't sound like autism, so good for you! Of course, I'm just a virtual person on the internet and your diagnostician had some questionable qualifications, but truly, maintaining good eye contact and using appropriate non-verbal communications to increase the quality of social interactions is quite counter indicative of an autistic disorder. I wouldn't entirely discount the notion and I would continue to vigorously pursue educational therapies, as you are doing, as if she were autistic, but I think you are right to feel some relief. Of course, you would have to be in agreement with that assessment. NT folks may not always get it right but the consensus is that most nt people can follow your gaze and spot what you are looking at or close to what you are looking at...Sarah was like 3-6ft off the item we were looking at..she couldnt coordinate looking at our eyes and then following the gaze to object we were looking at or even pointing straight at..we did a program to help in this area where we were real obvious..like looking at the Tv or couch and she did fine but if it was a picture on the wall across room she couldnt do it..so we would point to it and she learned to follow our pointing much better but still not typical. This will really affect her learning nonverbal cues with people because she doesnt focus on the details from other people too well like eyes, expressions... The dev. ped pointed this whole thing to me and demonstrated for us how she couldnt follow cues or even suggestions...this was 2 years ago and she may do better now but I think she still has a problem with it..I point to things all the time right smack in front of her and she reacts clueless!
I just want to wish you the best. You are a great Mommy for
getting her the help that she needs. You need time to digest all
of this but don't take too long. The Greeenspan book is
wonderful, and very hopeful and not just for ASD kids. Hopefully
she isn't on the specturm like the therapist said but do yourself a
favor like others have suggested take her to see a developmental
ped. I know that I was relieved when ds finally saw one.
She was very hopeful and he got so many more services because of it. Ok, I had a few minutes so I figured i'd post exactly what the Therp wrote as her inital findings...I know it's a little long but thought it might help... In summary; Based on the behavioral observations, family report, standardized testing, and clinical interview, it does not appear that Trinity meets the diagnostic criteria for an Autism Spectrum Disorder. Although Trinity does exhibit significant communication difficulties and concerns, she does not exhibit other significantly interfering behaviors suggestive of this disorder in the areas of Social/Emotional functioning or Behavioral functioning. For example, Trinity does not exhibit repetitive, stereotypical behaviors or self-stimulating behaviors, script quoting, or repeating of words because of their sound. She seeks social interactions and is aware of social curs in her environment and will behave accordingly to increase her success of obtaining her needs. She maintains good eye contact and will play interactively with her peers and adults. Although Trinity exhibits tantrums, they appear to be behavioral in nature such that she is able to quickly sooth herself when given the desired object or ignored. Trinity appears to have learned that her tantrums will excuse her from her responsibilities with which she does not wish to comply and increases the attention provided to her as well as allows her to get her way. Trinity at times reportedly demonstrated difficulty with leaving places; however, this does not consistently occur and appears to be related to her desire to continue to engaging in a certain activity. She can transistor well when encouraged by praise with very little to no emotional outbursts. Although Trinity exhibited food aversions that are more significant than peers her age at one time, this version lessened in intensity once she was not offered that preferred food/drink. Trinity’ most concerning presenting problem appears to be her regressed speech, which is being addressed successfully with the speech therapist. Cognitively, Trinity is functioning above most of her peers in terms of her ability to problem solve. & thanks to all who say shes cute, thanks i'm VERY proud![QUOTE=Pangle-n-Grace]
Snoopy-no there was no other person in the room with us. The total eval lasted about 45 mins. The final report is about 5 pages or i'd put it up for you to read. It did not help that my sister in law went with us. She gets her every weekend and even though she was one of the first people to come to me bacause she too saw signs..her mom, my MIL I think has since changed her mind. She told the therp flat out lies(like she is social and plays with other kids alot and thinks I have over exaggerate her high tollerance for pain). I informed the therp of this when I went back(just with my hubby) for the DX. This changed nothing. Does insurance typically cover an Devp ped? Also her Auditory Comprehension abilities were delayed 9 months,her expressive communication also delayed 9 months and overall launguage abilities delayed 10 months. She also lost almost 9lbs in a month due to not eating. That to me is not typical of a 2 yr old. She will only eat less than a dozen things. Also she is very social with us and with familure suroundings (church) but she is extrealmly anit-social with people she is not around alot of even at say birthday parties. She would rather play alone than with other kids. But she does play with her older sister and friends occasionally for short periods before drifting off to her self. She usually spends most of her time watching the same movie over and over(right now its Backyardigains) I feel as though true enough I am not the expert. I am her mother and that should acount for something right??Not to the in-laws!
**Looking for Freds comment to all this- I always enjoy reading what he posts and he always seems to know alot about well...most everything!
[/QUOTE] Pangle, I think it depends on the insurance whether or not they cover a developmental pediatrician. For ours, we needed a referral from our regular pediatrician and that was all. We had a co-pay as well for the visit. However, we had awesome insurance at the time and I think that is pretty rare to have that little of a co-pay. I do think that most insurances will cover a dev ped - but it's always wise to ask first! At age 2, it is incredibly difficult to measure social ability. The general standard is if they are not doing interactive play at age 3, then you should be concerned. We waited until about age 3 1/2 to start the eval process, because while ds was not avoiding other kids, he wasn't really interacting much with them either. He did it just enough to appease our worries, but around 3 1/2, we knew he should be making more progress in interactions than he was at the time. Losing 9 lbs in a month is a HUGE amount for a 2 year old and no, I do not think that is typical. And that is not something that a therapist should be dealing with - that should be dealth with by a physician in terms of what to do. Although you could get OT involved to see if there are sensory issues and food aversion issues - they can sometimes help with that if you get a good one. This is why I'm concerned that an intern therapist is trying to diagnose - she just plain isn't qualified to do so! I have my masters degree in social work and did in-home family therapy. I am not qualified to diagnose autism. Some licensed MSWs will diagnose it - but in reality, they shouldn't. Because you need to look at lots of things physically with the child as well when you do a comprehensive developmental evaluation and a therapist just isn't the person to do that. A dev ped is. At 2, having overall language delays of 10 months is pretty significant. I think you said you were getting speech for her - I'm sure you are going to continue that. I wouldn't tell the in-laws either - why open yourself up to more grief? Especially when all of us (who aren't able to diagnose, but when you've LIVED with these kids you have a really good idea of who is on the spectrum and who isn't!) seem to be agreeing with your suspicions. I think you are wise to trust your gut and continue on no matter what. You will not regret getting her therapies and working with her. BTW, Stanley Greenspan wrote a book called "Engaging Autism" and it talks about floortime as a therapy. You can purchase it at amazon as well as most bookstores. I will look into that book for sure. I plan to continue ST and start OT as well. We were refered to the therp by her PCP when I mentioned my concerns. I have heard many times over that the place we took her is not child-oriented,but in order for our insur. to cover it we have to go where they send us. I plan on looking around for a devp ped. Monday. Don't know how happy DH is going to be though...I think he has been on more of a emotional rollercoaster than I have. First he was in denial, then wanted to get her help, then denial again( thanks in part to 'ol MIL
I try to get her to interact with us as much as possible, but sometimes its hard. I had always thought I was lucky that she was so independent, with a sick baby to care for and going on no sleep...when I began to worry everyone said ohh...it's just "middle child syndrom"..I feel so bad I didn't notice sooner. As far as food goes the therp said if shes hungry she will eat...her ST said no feed her what she will eat..so I do as well as try to introduce others. I dunno I try but I am new to all this...
Thanks guys!!!!!
Does insurance typically cover an Devp ped? Also her Auditory Comprehension abilities were delayed 9 months,her expressive communication also delayed 9 months and overall launguage abilities delayed 10 months. She also lost almost 9lbs in a month due to not eating. That to me is not typical of a 2 yr old. She will only eat less than a dozen things. Also she is very social with us and with familure suroundings (church) but she is extrealmly anit-social with people she is not around alot of even at say birthday parties. She would rather play alone than with other kids. But she does play with her older sister and friends occasionally for short periods before drifting off to her self. She usually spends most of her time watching the same movie over and over(right now its Backyardigains) I feel as though true enough I am not the expert. I am her mother and that should acount for something right??Not to the in-laws!
**Looking for Freds comment to all this- I always enjoy reading what he posts and he always seems to know alot about well...most everything!
Why? Because ... it is something you can do on your own, without a therapist or any need to "qualify" her. Also because Greenspan is SO PRACTICAL about it -- it does not matter what your child's dx is, or even if they have one. If the therapy cna help it should be done! And yes, I know others will jump in saying ABA or RDI ... and, to paraphrase a popular catchphrase, they're ALL good! I just felt like Floortime might be easiest for ME! OK, I might need a quick overview of those therapies...I am still new to all this...is there a site I could visit to explain them all to me? And Greenspan is?? Thank you, I do need all the help I can get and so does she...anything I can do I am willing to do! I really appreciate everyones input!!!!All of you are so great! I have never met(well you know what I mean) such a diverse group of wonderful people with the same goals.Everyone is so anxious to help and share personal stories.You guys are amazing!!
p.s. Ahh!! So you've also discovered the new world of emoticons with different shapes and sizes !!
Regardless I am relieved. Eveyone, including her ST(whom is the one who truly believes she is under the spectrum) is so positive. Her ST and OT are great. This whole month has opened my eyes and heart. I always knew I was blessed to have such healthy beautiful kids, now so, though everytime I look at them I feel it in my
God has a plan for us all.
All you guys are so wonderful!!!
(can u tell I am in a good mood?? last night was the first time I have slept more than 5 hours in the last year...
My son was 3.5y when we got his first eval done. He was also--"too social and good eye contact". Well----the last time I checked---those 2 things weren't 100% CRITERIA for ASD. Those are just characteristics of some ASD kids. At 3.5y--my son got dx'd with Mixed developmentally disorder (they just wanted to "wait and see") and expressive/receptive language disorder. The SLP who was there--thought he was on the spectrum. At 4y--he was dx'd with Anxiety disorder, disruptive behavioral disorder and his language disorder. At 5y--Anxiety, bipolar, language disorder and "possible" ASD. At 6y--Anxiety, bipolar, HFA(not AS because of language delay) At 7y--Anxiety, HFA, ADHD So---don't be surprised if an ASD dx is later. Dh just got dx'd about 4 months ago with AS. After 37 years of living. I would tend to agree with fred here though - with some of the skills she has that are listed on the report, I wouldn't think autism. However, you know your daughter best and I think I remember your saying that there were untruths told by others that the therapist based some of this off. In addition to the therapist's inexperience and lack of qualifications as well! Two years old is very young to diagnose when there is a lot of "gray" areas. Your daughter seems to have some good strengths at least! I hope you do stick around - it will be good for us to hear how she progresses!
bullet & snoopywoman. All of those dx's together get pretty darn close to
the spectrum (if not smack dab ON it!), IMO. Sounds like she could easily
be dx'd as PDD-NOS--but what do I know... Also, my dd at 2 was given
several dx's (dev. delay, apraxia, static encephalopathy, SPD, possible
auditory processing disorder, man I think there may have been more...oh
"autistic features" came up all the time & they ran tests for her on
everything genetic & mito related to ASD). They wouldn't get really into
the PDD label until she was near 3, and by then it was getting obvious
they were in fact looking at autism.
The main thing, is to focus on those interventions as they will help either
way. Defenitely look into SPD--this could be the cause of some of those
behavioral issues. Stay in touch here, loads of advice & support for you.
See how the next 6-12 months go, if there are changes etc. Then, as she
approaches 3, get into a dev ped or other who specializes in autism if
these problems are still occurring & you at that point still feel it is PDD.
The actual diagnosis of autism won't make much difference at her age as
far as therapies go, especially given the diagnoses she has now. They will
all address the same issues. As she gets older, it would be important to
make sure the proper dx is given, if that is the case. Hopefully a few
months from now, the picture will be clearer & your dd will not appear to
be on the spectrum, but stick around for the support here that you may
have difficulty finding elsewhere. Wow--I hope some of this made sense!
Also, it could just be me being dumb...but if she is dx w/ disruptive
behavior disorder how can they state she does NOT have behavioral
issues? 
hope that with that information and new therapies, Trinity's issues will
improve. For any family members or others who may say "I told you so"
simply cut them off by explaining those dx's to them, that they are very
real. I would maybe write a letter to your immediate family members,
explaining the issues & what all is going to be required to help Trinity.
Trust me, language disorders combined w/ sensory processing &
disruptive behavior--that is A LOT to handle & your family needs to be
understading of that.
Of course I'm fairly new here, but IMHO there is no need for you to kick
yourself out!! Or, to say the issues you deal with are much less than any
of ours. Trinity's issues & dx's are real AND very much in common w/
kids on the spectrum. So, again IMO if you have questions or concerns,
you are more than welcome to come here. It may be hard to find the
right group/forum for you at this point with those various dx's. So, I say
stay as long as you like or need. Let us know how the OT eval goes &
what they say about SPD. Take care!!
yourself out!! Or, to say the issues you deal with are much less than any
of ours. Trinity's issues & dx's are real AND very much in common w/
kids on the spectrum. So, again IMO if you have questions or concerns,
you are more than welcome to come here. It may be hard to find the
right group/forum for you at this point with those various dx's. So, I say
stay as long as you like or need. Let us know how the OT eval goes &
what they say about SPD. Take care!![/QUOTE]
Good luck and take care of yourself.
BTW she is adorable.
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