Please help - dear friend is struggling with special needs child. - Mothering Forums

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#1 of 36 Old 01-03-2010, 12:37 PM - Thread Starter
 
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My dear lifelong friend called me last night in tears. She was having a bit of a breakdown, that I think was a long time coming.... I am hoping someone here can give me advice on how I can support her, and also maybe give some BTDT advice that I can pass along to her.

She and her DH have one child, a 5-year-old boy. He's been "different" since the very beginning. Autism was suspected for a while (based on two different daycare providers suggested he get checked), but never officially diagnosed. He was a very serious baby and toddler - rarely smiled. When he got older, he wasn't too social and spent most of his time lining up toy cars or playing one specific electronic game. Now that he's five and a half, he's connecting more with other children, and even has some friends. So autism doesn't seem as likely. But he has a serious speech delay. His vocabulary is probably similar to an average two-and-a-half year old. Strangers can rarely understand him. I know him pretty well, but still only understand about 25%-35% of what he says. Much of what he says are repeated short phrases from television. He doesn't understand others too well either and has a lot of difficult following all but the most simple of instructions (Example "give me that" with a hand gesture he'd probably understand. But "put the ball in the box" would be a real struggle.)

He's in a special education pre-k classroom. They are holding him back from starting kindergarten until he is six. My friend said they have never given her a clear diagnosis, which frustrates her a great deal. (I don't think she has pushed for a diagnosis either -- but really wishes she had one.) The school said he has delays in all areas (not sure what areas that means) except for gross motor. They do plan to start him in kindergarten next year, but told her he may not even need special ed (which confuses her and makes her question their entire system). He is a very well behaved kid, for the most part. He's never thrown a tantrum in his life and, while he is still working on learning to share, he does fine around other children. I think he's probably an "easy kid" in the classroom.

She loves her son very much, of course. But she was confessing to me that she is having a hard time connecting to him. She doesn't have the sort of relationship with him that i think she envisioned she would have with a 5 1/2 year old. A lot of this, I believe, is communication frustration. She is a very smart woman, and definitely a very social person... and I think she is frustrated and sad that she can't have any sort of real conversation with her child. Then, she feels terribly guilty for feeling disconnected and frustrated with her child... the guilt over these emotions, I think, one of the hardest parts.

I think part of what tipped her over the edge was she read an article yesterday that said over 50% of speech delays are due to mental retardation. I think she fears this is the future diagnosis. She kept saying "I just can't deal with a mentally retarded child! I don't have the patience! I can't!" Of course, this is said through tears, so I know it was emotionally based and not reality-based. The truth is, she is and would be a wonderful mom no matter what diagnosis her child gets.

So here are some questions I have for you all... if you feel comfortable sharing. I'll pass along any advice to my friend, of course.

- How important is getting a solid diagnosis? Did it help you in understanding your child and help you to know how to proceed? Would you recommend that she pushes the school to give her a diagnosis? Is a diagnosis even possible at such a young age?

- When is mental retardation diagnosed? I speculated with her on the phone that it probably couldn't be diagnosed until the child was old enough to take an IQ test, but I'm not sure... she is hung up with worry that this is what her son is facing.

- Does anyone else here have a child with such a serious speech delay at 5 1/2 years old? If so, was he or she ready for kindergarten at 6? If a delay continues this late into childhood, is it less likely to resolve? (She was questioning the whole "delay" thing and beginning to wonder if this was just as good as it gets. Although, I think he has shown improvements over the last year... just not huge improvements.)

- How can she work through her frustration (and sadness) and better connect with her child? I think she is so hung up on frustration, and perhaps even disappointment, that she can't get past that right now. (She doesn't show these emotions to her child, btw... these are her private emotions that she tries very hard to cover-up both publicly, and privately in front of her child.)

Thanks for any and all advice.

Thanks again!

Mama and co-parent to our beautiful DS (08/08) and our mighty strong DD (04/10) . Life is good.
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#2 of 36 Old 01-03-2010, 12:52 PM
 
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- How important is getting a solid diagnosis? Did it help you in understanding your child and help you to know how to proceed? Would you recommend that she pushes the school to give her a diagnosis? Is a diagnosis even possible at such a young age?

Yes, some diagnoses can be given at very young ages, it all depends on what the diagnosis is. Some diagnoses are progressive, meaning that the child may start with a broad diagnosis that becomes narrower as the child ages and can cooperate better with evaluation.

In my son's case it's a medical issue, so having the diagnosis was HUGE for us. It didn't change much of the way we treated him, we still managed each of his symptoms in much the same way, but it gave me something to research, some idea of what the future might hold. I have found the diagnosis to be comforting in many ways because at least now I know WHAT it is.


- When is mental retardation diagnosed? I speculated with her on the phone that it probably couldn't be diagnosed until the child was old enough to take an IQ test, but I'm not sure... she is hung up with worry that this is what her son is facing.

I don't know when the diagnosis changes from Developmental Disability/Delay to Mental Retardation, I assume it's past the early childhood stage though. For example, my son's syndrome is known to be associated with MR, but he's only 2 right now, so he's diagnosed with Developmental Delay. He's making progress in all areas, so MR is definitely not the right diagnosis for him...for now.

Learning disabilities are also very common in his syndrome, so it may be hard to differentiate LD from MR.


- Does anyone else here have a child with such a serious speech delay at 5 1/2 years old? If so, was he or she ready for kindergarten at 6? If a delay continues this late into childhood, is it less likely to resolve? (She was questioning the whole "delay" thing and beginning to wonder if this was just as good as it gets. Although, I think he has shown improvements over the last year... just not huge improvements.)

- How can she work through her frustration (and sadness) and better connect with her child? I think she is so hung up on frustration, and perhaps even disappointment, that she can't get past that right now. (She doesn't show these emotions to her child, btw... these are her private emotions that she tries very hard to cover-up both publicly, and privately in front of her child.)

Thanks for any and all advice.

Thanks again!
oops, baby woke up...i'll write more later.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#3 of 36 Old 01-03-2010, 12:58 PM
 
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Before someone jumps all over you and your friend - the preferred term is intellectual disability and it really is not that bad. I really can think of many things that are way worse!

Your friend is grieving the loss of the child she wanted versus the child she has. This is totally normal. She is going through phases similar to Kubler Ross's stages of grief - denial, bargaining (I just can't handle a "mentally retarded" child, etc. It takes a while to get to the acceptance stage...and even longer to get to the "I love this life" stage! All of her emotions are totally normal.

Eventually she will come to accept the child she has - but just telling her this will not get her to that stage. She needs to get there herself and be gentile with herself as she gets there. There is no need to add guilt to her already frustrating situation.

Btw, I have no idea if the speech delay will resolve or if he is intellectually disabled - but it is not normal to have such delays. This is why I say she is grieving- she has to know this and each day that passes she gets more and more anxious.

My advice to you is just to be supportive of your friend and understand that these are all normal emotions.
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#4 of 36 Old 01-03-2010, 01:14 PM
 
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Before someone jumps all over you and your friend - the preferred term is intellectual disability and it really is not that bad. I really can think of many things that are way worse!

.
nak

MR is a valid medical term, ID is a conjured term created by those uncomfortable with the societal associations of being 'retarded'. it's a 'PC' term. some people will say that 'disabled' is a bad word, 'differently abled' would be preferred. i tend to prefer to use medical terms with sensitivity.

and for a mom who is in the beginning stages of grief like you described, it certainly IS 'that bad'. telling someone it could be worse is not helpful, to them, it IS the worst they've ever experienced. i think that pointing out how lucky they are might invalidate their feelings and add to the artificial guilt.

i don't think any of us here are offended by the use of the term MR, nor are those of us with MR/DD children offended by someone who fears their child being diagnosed with it. i fear my other children being diagnosed with any kind of special needs!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#5 of 36 Old 01-03-2010, 01:20 PM - Thread Starter
 
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Before someone jumps all over you and your friend - the preferred term is intellectual disability and it really is not that bad. I really can think of many things that are way worse!

I'm so sorry! I didn't know there was a more politically correct term for it. I've never heard of "intellectual disability", but I'll make an effort to replace my vocabulary with that word if that is the standard. I hope I didn't offend anyone! My apologies.

(PS- should I go through and clean up the original post? )




ETA: Thanks, 2boyzmama, I guess we were posting at the same time. Thanks for sharing the other side of the argument for what is the "appropriate language" to use. And I absolutely agree that the "it could be worse" argument is meaningless to a mother in this situation.

Mama and co-parent to our beautiful DS (08/08) and our mighty strong DD (04/10) . Life is good.
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#6 of 36 Old 01-03-2010, 01:35 PM
 
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Now that he's five and a half, he's connecting more with other children, and even has some friends.

I just wanted to add that just because he has friends that wouldn't automatically rule out autism spectrum disorders. I have a child with ASD who has many friends and really connects with other children. Not necessarily in a typical way, but he does have lots of friends and is generally liked by other kids.

He should really have a full evaluation from a developmental pediatrician or someone who could help her get a better understanding of what is going on with him.

Mostly she just needs time. As other posters have said, it is totally normal to grieve the child you dreamed of even though you absolutely love the child you do have. Perhaps understanding what she is facing will help her to understand (and connect with) her child.


 

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#7 of 36 Old 01-03-2010, 01:43 PM
 
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Okay, baby is happy for a moment...

- Does anyone else here have a child with such a serious speech delay at 5 1/2 years old? If so, was he or she ready for kindergarten at 6? If a delay continues this late into childhood, is it less likely to resolve? (She was questioning the whole "delay" thing and beginning to wonder if this was just as good as it gets. Although, I think he has shown improvements over the last year... just not huge improvements.)

My son is almost 3, so we're not there yet. BUT, the speech issues common to his syndrome often extend well into elementary school. I recently read a book written by an adult who has my son's syndrome, and he said that his speech was not intelligible to strangers until past age 8. But I saw him speak on a talk show, and it was very clear as an adult. In his case it was primarily a muscle issue that was correctable with surgery and intensive speech therapy.

My son has made HUGE progress in his speech, yet most of his verbal attempts are not understandable to anyone other than me and my husband. He does, though, use sign language so he is able to communicate very well that way. He is too young for the surgery that can correct his muscle problems.

SO...all that is an example that sometimes speech CAN become more clear even past kindergarten. This is where getting the right diagnosis can be helpul. In my son's case, one of his speech problems is velopharyngeal insufficiency, and it is treated differently in therapy than other forms of speech issues.

- How can she work through her frustration (and sadness) and better connect with her child? I think she is so hung up on frustration, and perhaps even disappointment, that she can't get past that right now. (She doesn't show these emotions to her child, btw... these are her private emotions that she tries very hard to cover-up both publicly, and privately in front of her child.)

This is by far the hardest part. I've known about my son's syndrome since he was 11 months old, I knew SOMETHING was wrong at birth. But I still have dark moments, depressive periods, "why me" "poor me" feelings. That's to be expected!! I've learned that I have to let myself experience those feelings, I have to let myself be "weak" because otherwise the feelings overwhelm me and I lose it. It's so great that your friend has you to vent to, to let her true feelings out. She needs you!!!

We each find our ways of coping. I have a blog that I write out a lot of my feelings. It's very therapeutic to me. I have a few close friends that I tell my deepest darkest thoughts to. My mom and I have become very close through our discussions of Connor's issues.

Encourage your friend to come here, too! Let her meet us, meet other children with struggles like her son's. Sometimes just knowing that you're not alone is really helpful.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#8 of 36 Old 01-03-2010, 01:46 PM
 
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He should really have a full evaluation from a developmental pediatrician or someone who could help her get a better understanding of what is going on with him.

.
YES, it's not really the school's job to diagnose him. They have therapists and they have lots of experience, but a Dev Ped is probably the best to fully evaluate him. His pediatrician can refer him to a Dev Ped. Beware that the wait list is often long, though, I think it's about 6 months at our local children's hospital.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#9 of 36 Old 01-03-2010, 01:47 PM
 
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Is she, or will she consider, teaching her child other (non-verbal) ways to communicate? When ds was younger he had a serious speech delay. He didn't talk until after his 3rd birthday. We taught him sign language (LOVED the signing time dvd's!) and we also used a form of picture communication. We had/have a binder (small enough to carry with us wherever we went). Each page had strips of velcro (4 strips across each page). I took pictures (or found pictures on the internet) of EVERYTHING. Every food he ate, every person he came in contact with, every place we went to (park, stores, restaurants, people's houses, etc), cars he rode in, toys, favorite things (blankie, trains, etc), his bed, etc. I printed all of them out (into little pictures about 1in by 1in), cut them out, laminated them (saved money by using clear packing tape instead of real lamination) and put velcro on the back of each. This was a lifesaver. When ds started screaming because he wanted something I was able to pull out the binder and help him go through the pages until he found what he wanted. Before long he was carrying the binder around by himself and finding the pictures BEFORE the screaming started.

DS saw a neurologist at age 2 1/2 who told me to not expect ds to ever be able to verbally carry on a conversation with me and that I should make it easy on myself and give up hope of that right away. Needless to say, I was livid. I didn't believe it and I'm SO GLAD I didn't! DS started talking very shortly after that appointment and now, at 6 years old, is doing great! He still has communication issues, but he is starting to carry on somewhat of a conversation with us. Just goes to show you that anything can happen and that doctors do NOT always know what that will be.

My heart goes out to your friend. The not knowing was what was hardest for me. Once we got a diagnosis (autism) it seemed so much better. I felt that I could handle anything with Owen.... as long as I knew what it was.

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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#10 of 36 Old 01-03-2010, 02:27 PM
 
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Your friend is grieving the loss of the child she wanted versus the child she has. This is totally normal. She is going through phases similar to Kubler Ross's stages of grief - denial, bargaining (I just can't handle a "mentally retarded" child, etc. It takes a while to get to the acceptance stage...and even longer to get to the "I love this life" stage! All of her emotions are totally normal.

Eventually she will come to accept the child she has - but just telling her this will not get her to that stage. She needs to get there herself and be gentile with herself as she gets there. There is no need to add guilt to her already frustrating situation.

I agree. I was a lot like your friend--smart, social (and coming from a relatively commanding career to be at home with my son). So I get it. It's hard. Something that actually did help me a bit was the piece "Welcome to Holland" (you can google it). It just changed my perspective a little. It may help her see her situation a little differently in a way she's not quite able to do for herself at the moment.


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YES, it's not really the school's job to diagnose him. They have therapists and they have lots of experience, but a Dev Ped is probably the best to fully evaluate him. His pediatrician can refer him to a Dev Ped.
ITA with this. And if the child has a medical condition or some other diagnosable condition from the DSM, it's not likely the school has a professional on staff who legally CAN diagnose him. I'm not fond of dev. ped.s and would rather go to a neurologist (and beware: dev. neuros are not always actually neuros--some are pediatricians with no neurology training )


As for your other questions:

- How important is getting a solid diagnosis? Did it help you in understanding your child and help you to know how to proceed? Would you recommend that she pushes the school to give her a diagnosis? Is a diagnosis even possible at such a young age?

Well, we discussed the source of diagnosis above. In this case, I would say that a diagnosis is a double-edged sword: it's good to have a direction and a name to something that helps you research alternatives and options; but it also has the potential to pigeon-hole the child and the treatments. I would STRONGLY encourage your friend to take any diagnosis with a grain of salt and always keep in mind that (especially with dx's that cannot be substantiated clearly by blood work--like a chromosome deletion, etc.) the actual diagnosis may change. And having the "name" for it may lead to resources that introduce the concept that there could be misdiagnosis--which could lead to the CORRECT dx.


- When is mental retardation diagnosed? I speculated with her on the phone that it probably couldn't be diagnosed until the child was old enough to take an IQ test, but I'm not sure... she is hung up with worry that this is what her son is facing.

I believe this depends on the degree of MR. Some can be detected at birth.


- How can she work through her frustration (and sadness) and better connect with her child? I think she is so hung up on frustration, and perhaps even disappointment, that she can't get past that right now. (She doesn't show these emotions to her child, btw... these are her private emotions that she tries very hard to cover-up both publicly, and privately in front of her child.)

Just be there for her. If you get the opportunity, encourage her to find a support group for whatever condition(s) she suspects. Talking to other parents with children who have a confirmed condition can help her. It will either help her find help and resources, or it will help her rule out the possibilities. Either way, parents of SN children in general are usually sympathetic to another parent on their journey and willing to offer some help. This would also help her be with other people who share the personal difficulties and pain of reconciling their feelings about their child in a protected forum--even if it's not the same condition or illness.

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#11 of 36 Old 01-03-2010, 02:48 PM
 
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I understand a lot of what your friend is going through. I think you got a lot of good advice, but I can add that our neurologist said that IQ is set in something like 85% of people by age 5. So by age 5 when they take an IQ test you can count on the score to be pretty accurate. I would venture a guess that the school has already given her son an IQ test, and all she has to do is ask for the score. I know my mom is a Special Ed teacher and she has IQ scores on all the kids in her case load. Maybe it is a state by state thing.
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#12 of 36 Old 01-03-2010, 03:25 PM
 
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Autism was suspected for a while (based on two different daycare providers suggested he get checked), but never officially diagnosed. He was a very serious baby and toddler - rarely smiled. When he got older, he wasn't too social and spent most of his time lining up toy cars or playing one specific electronic game. Now that he's five and a half, he's connecting more with other children, and even has some friends. So autism doesn't seem as likely.
I wouldn't rule out an autistic spectrum disorder. There are a lot of red flags there from his early childhood and having some social connections now doesn't mean he's not on the spectrum. The social deficits can be subtle. I didn't even consider that my very sociable kids could be on the spectrum. My son's recent dx at 13 of an ASD has blown my stereo-typed image of what it means to be autistic out of the water.

A proper dx has been essential in helping me know how to approach his behavior. My parenting is undergoing an overhaul as I learn what ASD kids need. So far, my son is thriving as I implement ASD-friendly practices into our home. Our relationship has never been better. Its wonderful to know that the behaviors aren't willful, it really helps me not feel angry with him, though I do still get frustrated and sometimes forget the behavior is an ASD trait. Its been hard to change my thinking sometimes. Additionally, a dx may also help get him services through the school. Homework has always been a huge issue for him, and I have learned that is common in high functioning kids like him. So a dx allows that to be addressed from the point of helping support my son and have success rather than taking punitive measures as if he's just some bratty kid, from both mine and the schools perspective. Getting the dx was shocking, and I am still greiving, but it has empowered me with a direction and I don't regret it. I actually am more grieving the loss of the last 10 years as I struggled with my son without the right dx. If he had been properly evaluated at age 3 or 4 when I took him to the behavioral ped and he had been getting proper treatment and services all this time, where would we be today?

Speaking of behavioral pediatricians, we went that route and it did not get us the proper diagnosis. It was a pretty short eval, maybe an hour or so, consisting of the ped casually watching him play with blocks while talking to us. He dxed him with anxiety and OCD, but missed the ASD. Hindsight being 20/20 I would have requested a more formal, extensive evaluation. But that was 10 years ago and I don't think they understood as much about the early, subtle signs of ASD's as they do now, so who knows.

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#13 of 36 Old 01-03-2010, 04:00 PM
 
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I agree with PPs that he needs to be seen by specialists outside of the school, with great attention to the credentials of those specialists - what is the range and limitation of their diagnostic background? Also, I agree that ASD can't be ruled out as it's a spectrum and there are markers with this little boy.

I would highly recommend that your friend start to view herself as her son's case manager. She will end up being the expert on her son, using specialists as assessors and advisors. She's entitled to see every eval completed by the SD and should get copies of all of it and understand it. It's easy to get lost among professionals who pass you through the system, and I find it very empowering and in my son's best interest to view myself as in charge .

Mom to a teenager and a middle schooler.

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#14 of 36 Old 01-03-2010, 07:30 PM - Thread Starter
 
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Thanks for being so generous with sharing you advice and experiences!

I just talked to her and she is feeling a bit better today. Good days, and bad days... ya know? Sometimes she just needs to vent. That's all I'm really equipped to help her with anyway, is venting. I can't give her any real expert advice, and I haven't BTDT... but she knows she can say anything to me and I don't judge her. She is a wonderful mother, in my eyes, and the range of emotions she's going through doesn't detract from that. Grief is a good way to describe it, I think you all hit the nail on the head. Other being a safe place for venting, I sometimes watch her DS to give her some time to go get her hair done or shop or whatever she wants. Sometimes just getting some breathing room seems to help.

Is it possible for him to simply have speech delay, which he will "outgrow" with time and therapy? Or since he is 5 1/2 is it more likely that the delay is part of a larger issue?

Autism has largely been brushed off just because of how far he has come socially. But even her DH worried their child had autism when he was two and three. I didn't know enough about it to make any sort of assumption, but I remember her showing me a list of autistic traits when he was around three, and he matched the list very well (repetitive unusual play, walking on tip toe, poor eye contact, speech delay etc.). He makes better eye contact now, though, and approaches children (even children he doesn't know) to play with them. I don't know all the details, just that the school does not apparently believe he is autistic. The closest thing to a label I've heard the school placed on him was a developmental delay (it might have been a "global" developmental delay, but I could be misremembering.)

In my very very limited understanding, I thought autism was strongly associated with social issues. It sounds like it is a very complex diagnosis, though, without any clear and defining characteristics (that is, a very wide spectrum). There are lots of website out there, I know, but does anyone have a recommendation for one that lays things out as clearly as possible? Maybe one that defines autism without an emphasis on social skills?

I haven't ever heard her talk about bringing her son to a special doctor. I do know she likes her regular ped, who is very laid back. He may be a bit too laid back, I suppose... she was surprised when she was asking me about my own son's pediatrician and what we do at appointments, and I was describing the list of developmental questions she (the ped) asked. They even send out surveys to fill out at-home with various "tests" you can do with your child and indicate how they did (I had these more before he was age one... like at the four-month check up, I think one of the pre-appointment survey questions was to drop something on the floor and see if he looked down for it... that sort of thing.) So while there is a lot to be said about a laid-back pediatrician, I think he may have missed a lot of early flags. Her DS didn't get any professional therapy until age four, and he entered pre-k based on his kindergarten entrance evaluation. (Er...wait, that's not entirely accurate. He did see a speech therapist a few of times when he was three. This was based on the initiation of my friend and her DH... but they stopped because they said he made no progress, and plus it was insanely expensive.)

I know her insurance isn't great, so that may make her hesitate to bring him in for an expensive specialist... but I'll let her know it was mentioned on this thread by several BTDT parents and see if she wants to consider it. Insurance may be a bigger issue, though, than her desire for her son to see a specialist.

The suggestion to get a community of parents facing the same struggles is great! I can see how beneficial that could be. I think she has only had one opportunity to meet other parents in the pre-k program, which was at a Christmas show the kids did... she said everyone was nice, but I don't think she connected with anyone on a "lets get together" level. But if she decides, after hearing the advice on this thread, that she wants to turn these parent's into a support community, you can be sure that she wouldn't be shy about directly approaching them. (I so admire that... I'm way too shy myself. )

Thanks again for all of your responses. I'll also suggest that she checks out this forum. She doesn't really frequent message boards, but I think she'd probably at least enjoy occasionally lurking here. Who knows... maybe she'd even post occasionally. This is obviously a very supportive forum, so she might like it. (Although, she definitely isn't very crunchy... so she may be turned off by some MDC philosophies...)

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Is it possible for him to simply have speech delay, which he will "outgrow" with time and therapy? Or since he is 5 1/2 is it more likely that the delay is part of a larger issue?
It is possible for a child to have a speech delay and only a speech delay.

However, it's possible for a child to have mild ASD that looks like a speech delay only to people who don't have a trained eye for high functioning autism. A professional who knows what very high functioning autism looks like can weed out a simple speech delay from spectrum behaviors. I'm obviously a stranger on the internet but it sounds like there's more than a speech delay at play here. It sounds like he might have mild ASD or some auditory processing issue.

A child with just a speech delay will still have typical nonverbal communication. Does he? For example, does he bring things to her just to show her so that she shares his interest? This is different from bringing things to her to have her help him. Does he ask her to look at what he's doing so that she can share in his excitement? Say she turns her head to look at something will he notice that and also look in the same direction to see what she's looking at? Does he consistently nod his head for yes or shake his head for "no" or use other nonverbal communication?

A school cannot diagnose. It takes a trained child professional to do that. And you need someone with experience with high functioning kids. It's quite possible for a child to have some social skills, smile, be affectionate and still be on the upper end of the spectrum. There are so many things you can do to help such a child. I'm using a general "you" here. However, if you wait too long, the gap between a typically developing child and a child on the spectrum grows larger. It's not a good idea to wait and see if he outgrows these issues on his own. Better to get an evaluation now. I realize as a friend you're in a really difficult position with regard to what to tell your friend.

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In my very very limited understanding, I thought autism was strongly associated with social issues. It sounds like it is a very complex diagnosis, though, without any clear and defining characteristics (that is, a very wide spectrum). There are lots of website out there, I know, but does anyone have a recommendation for one that lays things out as clearly as possible? Maybe one that defines autism without an emphasis on social skills?
Not likely. Partially because autism spectrum disorders vary so widely from child to child and social skills is a serious factor to consider--whether a child can reach out to others... whether they can make their needs known. Like my son had no concept of sharing the information that he was hungry or hurt. We'd be up late at night wondering why he couldn't sleep only to TRY giving him a snack and voila--he'd sleep. When he finally came around to voicing a need or desire, he didn't connect that this had to be voiced to a human... so I'd be in the kitchen and hear him speak to himself. He was saying that he was hungry, but nobody could really hear him and nobody was in the room (and he wasn't hollering out). Those are social skills--interacting with humans. And how severe that is can determine where in the spectrum they land. But there are plenty of kids with Asperger's that are fiercely social and suffer depression from trying to reconcile their need for socializing with there inability or lack of skill for it.


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I know her insurance isn't great, so that may make her hesitate to bring him in for an expensive specialist... but I'll let her know it was mentioned on this thread by several BTDT parents and see if she wants to consider it. Insurance may be a bigger issue, though, than her desire for her son to see a specialist.
If you could say what state she's in, we could probably point you to a good resource. Shelling that money out once may save her a LOT of agony in the long-run in terms of caring and advocating for her child.


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The suggestion to get a community of parents facing the same struggles is great! I can see how beneficial that could be. I think she has only had one opportunity to meet other parents in the pre-k program, which was at a Christmas show the kids did... she said everyone was nice, but I don't think she connected with anyone on a "lets get together" level.
If the pre-k was for other special needs kids, great. But I was talking about a support group in the more formal sense--where she can attend meetings when she feels like it and just sit and listen without the pressure of connecting with anyone. And then if she connects, great.

I found that the internet was my lifeline for finding information and doing research. She might find the same. It's strongly encouraging that her husband felt that their son had issues, too. Half the time, that's a battle to get two parents on the same page.

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My DS, 5 ASD, sounds alot like that child. He has a speech delay - expressive speech is not so great. However, receptively he is very, very, good. Contrary to other posters, I received the best information from a Ph.D. school psychologist through our school system, who has seen hundreds of kids on the spectrum and had about 25 years of experience. She told me his diagnosis and ventured to say he was average to high intelligence, just drawing upon her experience with other children over the years. I think a well-versed practitioner could probably provide some answers your friend is looking for, whether private or thru the school system.

BTW, my developmental neurologist (Duke Medical Center) says IQ can't really be captured accurately until age 8.
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My DS, 5 ASD, sounds alot like that child. He has a speech delay - expressive speech is not so great. However, receptively he is very, very, good. Contrary to other posters, I received the best information from a Ph.D. school psychologist through our school system, who has seen hundreds of kids on the spectrum and had about 25 years of experience. She told me his diagnosis and ventured to say he was average to high intelligence, just drawing upon her experience with other children over the years. I think a well-versed practitioner could probably provide some answers your friend is looking for, whether private or thru the school system.

BTW, my developmental neurologist (Duke Medical Center) says IQ can't really be captured accurately until age 8.
Isn't the difference the PhD? Most school psychs are master's level (at least where I am, so this may not be generalizable). I think that master's level psychs are not qualified to apply and diagnose using the DSM, but PhDs can. Also, where I live, spectrum diagnosis is derived from at least 2 qualified assessors - requires a pych-ed, ADOS and ADI-R.

MyZymurgy, here's an online tool:
http://www.childbrain.com/pddassess.html

ASD really is a wide spectrum. Reading the criteria in DSM is actually a good place to start:
http://www.autism-society.org/site/P...out_whatis_PDD

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The others have given you great information, I'm gonna get very basic here and ask if he has had a through medical cheak up - especailly the ears - and a hearing test done - a good test, not just the infant screening test. A prolonged period of poor hearing can result in all sorts of speech and understanding issues.
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Just my experience with IQ tests, but my son's IQ has tested as low as 67 (age 4) to as high as 120 (non verbal) and 107 (verbal) at the age of almost 6. IQ test can be very inaccurate in kids with speech delays. I think worrying about IQ tests is less important then finding away to communicate and connect with her son.
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#21 of 36 Old 01-04-2010, 12:32 PM
 
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The others have given you great information, I'm gonna get very basic here and ask if he has had a through medical cheak up - especailly the ears - and a hearing test done - a good test, not just the infant screening test. A prolonged period of poor hearing can result in all sorts of speech and understanding issues.
DUH! How could I forget that??!! Yes, definitely get ears/hearing checked. What was beginning to happen with my son was he learned to not trust his hearing because he had variable hearing loss (it was sometimes only mild, sometimes moderate-severe). So he learned to just "turn his ears off" basically. He appeared for a while to be fully deaf.

So definitely get not only hearing checked, but vision also. A lot of hearing is through vision.

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#22 of 36 Old 01-04-2010, 12:43 PM
 
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First, I want to say that you must be a wonderful friend. I can relate to the feelings that your friend shared with you and they are VERY hard for me to talk about. I wouldn't assume that how she was feeling is how she feels everyday, or how she will feel next year. Our feeling come and go and sometimes are more intense than others. Being able to talk about them with a supportive listening is sometimes enough to disipate the storm.

I think the feeling that motherhood isn't turning out the way we expected is pretty common, even for parents of typically developing children. I think that for some moms of SN needs kids, they are more intense and accompanied by more guilt. If these feeling persist and are intense for your friend, talking to a counselor can help. The reality is that since every SN child is different, no other parent has BTDT. I think making peace with all this is like processing grief or overcoming post-partum depression and sometimes a professional is a good thing!

Next, I totally agree with the other about seeing a specialist out side of the school system and getting better answers. If this child hasn't seen the best audiologist in the city, he needs to. Many speech problems are related to hearing problems.

I also think a thorough developmental evaluation is in order. However, I'm not convinced that such a thing as a "solid dx" really exist. We are getting ready to do a new evaluation for my 13 year old! Kids change and the demands on them change, and for quirky kids who don't neatly fit into a dx, the dx can change. Even for kids who neatly fit a dx (such as classic autism), specialist are only making their best guess as to what the child will eventually be able to do. Parents are often told things that end up not being true for their child.

However, having a dx can be very, very helpful in getting grounded and taking the next step or two. I just wouldn't think of it as something carved in stone. It would be soooo nice if someone could tell us what our kids are really capable of, what sort of lives they can live as adults, and exactly what we need to do to help them get there. Sadly, no one can. A dx is just "this where things seem to stand right now, so this is what makes sense right now." Obviously that's very helpful, sadly that isn't everything we'd like to know.

It does help one learn to live in the present and let go of the future.

I like the book "quirky kids." You might see if you can pick up a copy of it and see if it would help your friend.

The other piece of advice I have is to encourage your friend to try to figure out what is fun for her and her son to do together. It's sooooooo easy for me to get caught up in my DD doesn't enjoy or what doesn't work that I can completely lose site of what does work. Do they like to play with play dough together? Bake cookies together? Does he like to listen to stories? When is he happiest? Does he like looking at pictures of himself? If she starts figuring it out and focusing on it, she'll find ways to make it bigger.

but everything has pros and cons  shrug.gif

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The others have given you great information, I'm gonna get very basic here and ask if he has had a through medical cheak up - especailly the ears - and a hearing test done - a good test, not just the infant screening test. A prolonged period of poor hearing can result in all sorts of speech and understanding issues.
I feel like a complete moron for not recommending this. But yeah, plenty of physical problems can manifest in what looks like developmental problems. Hearing and vision being top priority.



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The other piece of advice I have is to encourage your friend to try to figure out what is fun for her and her son to do together. It's sooooooo easy for me to get caught up in my DD doesn't enjoy or what doesn't work that I can completely lose site of what does work. Do they like to play with play dough together? Bake cookies together? Does he like to listen to stories? When is he happiest? Does he like looking at pictures of himself? If she starts figuring it out and focusing on it, she'll find ways to make it bigger.
Totally agree with this. For me and my son, it became 10-15 minutes of mimicking funny faces (once he was able to actually acknowledge that I was there and to be interacted with ). But I felt connected to him for that period of time and it was huge.

Heck, before that--when I didn't really exist to him--we were cosleeping just to feel close to him. He had sensory issues, so holding and snuggling were totally out; but when he slept, it seemed to be okay as long as we weren't touching him a lot.

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#24 of 36 Old 01-04-2010, 04:30 PM - Thread Starter
 
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Wow - once again I have to give my heartfelt thanks for your wonderfully helpful posts. I really appreciate you all taking the time to give your advice and share your experiences. THANK YOU!!

To answer a couple of questions.... she lives in Minnesota. I believe her son had a hearing test at around the age of three (I believe it was done right before they tried their hand at a few speech therapy sessions). I have no idea who conducted this test, but I want to say it was a recommendation or referral from the speech therapist. I'd be surprised if he has hearing issues, but who knows. The reason I say I'd be surprised is because he has always been very sensitive to sounds. Loud sounds really bother him (like a vaccuum cleaner, for example). He seems a bit less bothered by them as he gets older, but he still covers his ears when a noise is too loud.

As for teaching her DS non-verbal ways to communicate... she has never worked on this with him, and that's a great suggestion. I believe one daycare he was at when he was around two was teaching sign language because I remember he know the sign for ball... but I don't think he picked up too much of it (and this could be due to the fact that she didn't really enforce it at home). As far as I know, he hasn't been exposed to sign language since the age of three or so.

I'm not an expert, and therefore not a great judge of what I am seeing in her DS. But someone asked how is non-verbal communication was doing. (Does he nod yes/no, etc,) Too me, his non-verbal skills aren't great. He really doesn't nod yes or no very often, and when he doesn't he doesn't necessarily correlate to what he wants to say, it seems. He's never been a big pointer, and while I think he knows how to point and understands what it means at this age he doesn't really do it. When he was really little, like younger than two, I remember he would take my hand to have me point at items in a counting book as I counted out loud. I'm not sure if that qualifies as pointing?? I would describe his non-verbal communication as minimal, and perhaps awkward... but, again, I don't have a clear idea of what is 'normal' in this area.

He's very rigid in many ways. Things have to happen in a certain order. He likes lining things up. We used to joke when he was a toddler than he has OCD... although such jokes really no longer seem funny.

Thank you for the links on autism - very helpful! It really seems to describe him well, actually... except for the social part. But again, as a non-expert it is impossible for me to make a real assessment.

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Qualitative impairment in social interaction, as manifested by at least two of the following:

* Marked impairment in the use of multiple nonverbal behaviors such as eye to-eye gaze, facial expression, body postures, and gestures to regulate social interaction .
* Failure to develop peer relationships appropriate to developmental level
* A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
* Lack of social or emotional reciprocity
I think he definitely has at least one of these, but perhaps not two. I would agree with the first one, but all others are a question mark for me. He may also have the last one (lack of social or emotional reciprocity), but again without knowing what is truly "typical", I have no idea where he falls. PDD-NOS could be a possible diagnosis, and I'll (very gently) put this out there for my friend the next time it comes up in conversation and she asks what I think.

Bottom line, I agree that a professional evaluation is in order. I just think financial barriers may be preventing it - but, it could very well be emotional barriers too. She says she wants a dx, but I know sometimes she doesn't want one. I'm sure many of you can relate to that feeling. Some days she really just wants to have her head in the sand, and some days she wants to know exactly what is going on and throw herself into "research mode".

You've all given me a lot to think about and share with my friend. Thank you for that.

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As for teaching her DS non-verbal ways to communicate... she has never worked on this with him, and that's a great suggestion. I believe one daycare he was at when he was around two was teaching sign language because I remember he know the sign for ball... but I don't think he picked up too much of it (and this could be due to the fact that she didn't really enforce it at home). As far as I know, he hasn't been exposed to sign language since the age of three or so.

I'm not an expert, and therefore not a great judge of what I am seeing in her DS. But someone asked how is non-verbal communication was doing. (Does he nod yes/no, etc,) Too me, his non-verbal skills aren't great. He really doesn't nod yes or no very often, and when he doesn't he doesn't necessarily correlate to what he wants to say, it seems. He's never been a big pointer, and while I think he knows how to point and understands what it means at this age he doesn't really do it. When he was really little, like younger than two, I remember he would take my hand to have me point at items in a counting book as I counted out loud. I'm not sure if that qualifies as pointing?? I would describe his non-verbal communication as minimal, and perhaps awkward... but, again, I don't have a clear idea of what is 'normal' in this area.
Typically developing young children pick up nonverbal communication early on. Even children who can't yet speak in sentences will nod or shake their head in response to a question. They point. They look at something then turn around to make sure you're looking at it too. I've seen typical kids less than a year old do this. No one has taught them. They observed other kids and adults doing it, and they picked it up. They learn from their environment. Kids on the spectrum don't learn from their environment the same way unless they get the help they need.

The kind of pointing you describe isn't the same as him pointing to say an airplane in the sky because he's excited to see it and he wants to share it with someone else. I'll give you an example, we went to an aquarium when my DD was about 3 years old. She looked at a large fish in a tank and she said, to herself, to no one in particular, "that's a big fish!" She wasn't sharing information with me or her father. She was just commenting to herself. Just then, a boy her age came long and he said "Mommy! Mommy...Look! Look at that fish" and he pointed at the same fish. Do you see the difference?

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Typically developing young children pick up nonverbal communication early on. Even children who can't yet speak in sentences will nod or shake their head in response to a question. They point. They look at something then turn around to make sure you're looking at it too. I've seen typical kids less than a year old do this. No one has taught them. They observed other kids and adults doing it, and they picked it up. They learn from their environment. Kids on the spectrum don't learn from their environment the same way unless they get the help they need.

The kind of pointing you describe isn't the same as him pointing to say an airplane in the sky because he's excited to see it and he wants to share it with someone else. I'll give you an example, we went to an aquarium when my DD was about 3 years old. She looked at a large fish in a tank and she said, to herself, to no one in particular, "that's a big fish!" She wasn't sharing information with me or her father. She was just commenting to herself. Just then, a boy her age came long and he said "Mommy! Mommy...Look! Look at that fish" and he pointed at the same fish. Do you see the difference?
That's a great example, thank you! Yes, that makes total sense.

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#27 of 36 Old 01-04-2010, 09:35 PM
 
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I am sorry, but the more details you post about this child, the more ASD traits I see. The covering the ears at the loud sounds and taking an adults hand to point at things were both in the red flags videos I observed on a website called Autism Speaks. I am not convinced that your friend's child does not have social deficits based solely on his ability to approach and interact with other children. My high-functioning son does that as well. He is very friendly and fun-loving. But he is often bossy and rigid with the rules to games. He doesn't pick up easily when someone is becoming bored or frustrated with him, he doesn't easily notice when the laughter changes to uncomfortable laughter when he is tickling his brother a little too hard. Just as I was writing this he was messing around with his brother in the kitchen and his brother bumped into the counter with his elbow and started whimpering and he didn't notice and kept laughing (they were both previously laughing). Once I pointed out, "He hurt." he instantly stopped, and said, "Oh sorry, are you ok?" He just doesn't pick up the nuances. As I have said, it can be subtle, but it still really impacts their ability to have an enjoy age-appropriate relationships.

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#28 of 36 Old 01-05-2010, 02:11 AM
 
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PDD-NOS could be a possible diagnosis, and I'll (very gently) put this out there for my friend the next time it comes up in conversation and she asks what I think.
I really hate this label because of the word "pervasive." It just freaks me out because it sounds so permenant and huge. The book I mentioned earlier (Quirky Kids) covers several related dxs, including PPD, and it might be eaiser on your friendship to just give her the book. (My DD fits this label, but I hate it and never use it because it just doesn't sound right to me for what all she is capable of). I like the label "ASD" much better.

Some of what you describe sounds like sensory issues. Does he seem to seek out OR avoid sensory input other than noises? SPD (sensory processing disorder) is common in kids with ASD.

but everything has pros and cons  shrug.gif

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#29 of 36 Old 01-05-2010, 02:41 PM
 
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Just wanted to echo what everyone else is saying. What a wonderful friend you are!

As a speech pathologist, I did also want to add that it is very possible for a child to have a severe language impairment and nothing else. However, to be diagnosed as having "developmental delay" the impairments must be in other areas (not just speech). Perhaps things have changed since his last eval, but whenever that label was put on, he was likely put through a battery of assessments looking at speech, gross and fine motor, etc. If he was ONLY delayed in speech, his label would be "Speech Impairment" only. So he must have had delays in other areas (at least at the time of the assessment).

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I'm not an expert, and therefore not a great judge of what I am seeing in her DS. But someone asked how is non-verbal communication was doing. (Does he nod yes/no, etc,) Too me, his non-verbal skills aren't great. He really doesn't nod yes or no very often, and when he doesn't he doesn't necessarily correlate to what he wants to say, it seems. He's never been a big pointer, and while I think he knows how to point and understands what it means at this age he doesn't really do it. When he was really little, like younger than two, I remember he would take my hand to have me point at items in a counting book as I counted out loud. I'm not sure if that qualifies as pointing?? I would describe his non-verbal communication as minimal, and perhaps awkward... but, again, I don't have a clear idea of what is 'normal' in this area.
He might physically have a difficult time nodding. My son can nod "no" but he have a very hard time with "yes". We've been working on this - we usually tell him to look up and then look down. Also, my son around 13 months used to use my finger and point to objects in a book. This is not considered true pointing - he is using your finger "as a tool". I used to think it was super cute but if I had known this is an indicator of a possible ASD, I would of taken him in for an eval at that time.

I agree with one of the PPs that IQ does not matter at this point but what really needs to start happening is getting him to communicate with his mother, whether it be with pictures, signs, gestures, or words. Practice, practice, practice
CarrieK is offline  
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