Please help - dear friend is struggling with special needs child. - Page 2

[2boyzmama]

Originally Posted by momtoalexsarah

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.

[Linda on the move]

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.

[heatherdeg]

Originally Posted by momtoalexsarah

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.

Originally Posted by Linda on the move

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.

[MyZymurgy]

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.

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.

[BookGoddess]

Originally Posted by MyZymurgy

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?

[MyZymurgy]

Originally Posted by BookGoddess

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.

[earthmama4]

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.

[Linda on the move]

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.

[BethSLP]

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).

XOXO
B

[CarrieK]

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

[Kailey's mom]

Originally Posted by MyZymurgy

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.



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.

I just wanted to highlight the red flags I saw. Sounds like he's on the spectrum.. best advice is "be there" Hugs!

[MyZymurgy]

Thanks again for the wonderful responses - you guys are great!

One thing I want to clarify, though... is taking your hand and pointing always an indicator of concern? I ask because my own 16-month old does this. One book in particular, for some reason, he likes to take my hand and point to socks in a dryer. LOL! I have no idea why. He also points on his own, though (like if I ask him to point to something in a book, he does). Although I was posting her about my friend's child, now you all have me wondering if I should mention particular trait to my own son's ped. So... as many of you have mentioned this as a red flag, could you please enlighten me? Is it always a red flag, or only if that is the only way a child "points"?

(Sorry to make the post suddenly me-me-me! LOL...)

Thanks so much! This is a wonderful board. I hope I can convince my friend to post here herself - or at least lurk here.

[Adamsmama]

- 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?
Hugely important for me (and DH) ... it helped me accept my son, understand what he was going through and helped me to connect better with moms of SN kids. Yes, my son was globally delayed since about 1 yr old (that we recognized) but he wasn't diagnosed officially with anything until he was 5 ... it seemed like forever. He has CP, Sensory Integration Disorder and Autism, Global Delays.

- 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. When a child is globally delayed MR is the usual suspect, at least from my research, my son would be considered to be that ... but not diagnosed until later, I think 8 or 9? Yes, around the time of an IQ test ... more a label for the school district, I thought???

- 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's speech has forever been delayed he is now almost 7 and still delayed (had a huge breakthrough at age 5.5 but still not like his peers) He was put into a special-ed self-contained kindergarten and now 1st grade

- 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 normal stage (the frustration, sadness, disappointment...) I think she should read as much as she can about delays/global delays and find a local support group, like Family Connection where she can find support, other moms, play groups, etc. I recognized all these "terrible" feelings and isolation I felt were parts of the grieving process over his disorder and the loss of the idea of the child I thought I would have.

ETA: My son is on the spectrum and is fairly social...everyone comments on his eye contact, his smile, he hugs people, he is a happy kid, in general ... but also low-functioning (based on IQ/developmental levels) autistic.

[LisainCalifornia]

Originally Posted by earthmama4

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.

I completely agree. I would be totally surprised if this child was NOT some where on the spectrum. He is showing very classic ASD symptoms, and probably could have been easily diagnosed with an evaluation years ago.

My daughter is on the spectrum, and I found her social abilities have waxed and waned over the years. She started off very socially adverse, then made "friends" in preschool and early K and 1st-2nd. By 3rd grade the social problems arose again, which is not uncommon--as play gets more complicated at this age, especially among girls. From 3rd grade till now she has really struggled socially--and now she is 13. She interacts socially with her siblings and me and her dad, but struggles everywhere else.

I wish your friend good luck. It should be fairly easy for her to find a good developmental pediatrician in her area and get an evaluation. I took my daughter to a few, actually--as I was reluctant to accept the diagnosis myself. My advice to you is to really encourage her to get her child evaluated. I took my daughter first to a psych or diagnosed her after one visit, and then a few years later to a standard dev. pediatrician who saw her over 6 visits and then diagnosed her. I never told the second doctor about her first diagnosis, as I didn't want to lead him there. When he came up with exactly the same dx I was able to accept it, and after that felt more relaxed with my daughter. It gave me a better understanding of why she acted the the way she did, and I was able to get her more help and services.

Good luck to your friend.
Lisa

[nayma]

just wanted to pop in and reassure you that your son taking your hand to point to something does not seem like a red flag to me. pointing is used as one means of nonverbal communication from a very young age - just like waving, nodding yes or no, facial expressions to convey a feeling more complicated than just happy or sad. it's when a child doesn't seem able to use their little bodies to help them communicate (barring something physical that prevents it) that it becomes a concern. does that make sense? my dd always smiled, laughed, and as soon as she hit 16 months, talked an unholy amount (lol), but she never got that even without words, people communicate a HUGE amount with their faces and bodies. she doesn't notice others nonverbal communication, doesn't reference their faces for clues, never looked back for reassurance from me as a little one, etc. and even now, when i try to convey what i'm feeling with a basic facial expression, she'll say, "mom, what does that face mean?" to me, ASDs are not about individual little characteristics, per se, as much as a bigger picture that paints a consistent and pervasive difficulty with social interactions and communication skills. and as far as the social stuff you mentioned about your friend's son, my dd is another kid who (to the untrained eye) could be considered social - that is, until you notice that just because she's outgoing at times, and kids (usually older or younger ones) will play with her for a short time, she just doesn't inherently know how to socialize - no matter how much we talk or practice. anyway, hope this helps. let me second (or tenth) the fact that you sound like an outstanding and caring friend. she is truly, truly lucky to have you by her side right now. the other thing i thought about is that if your friend isn't into chatting on this board, she is always welcome to send someone a private message and chat that way. i'm sure they're are multiple people who would absolutely be willing to email with her. take care.

[Linda on the move]

Originally Posted by MyZymurgy

Although I was posting her about my friend's child, now you all have me wondering if I should mention particular trait to my own son's ped.

I think the unless there is something else going on, it isn't a big deal.

A lot of the quirky things about my DD show up sometimes in other kids, but it is the intensity and frequency. For example my DD gets easily overwhelmed. Most people can get overwhelmed, but for her it is with simple, every day activities and impacts everything about her life and our family life. Feeling overwhelmed is normal, but the degree to which my DD feels overwhelmed is not.