Intellectual disability? I wonder if my toddler has this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My 17.5 month old has significant developmental delays. He’s not walking, still not pulling to a standing position, has not one word and most troubling is he doesn’t know how to play. He’s been in early intervention since he was 9 months old and he was recently evaluated by a developmental pediatrician. The doctor ruled out celebrating palsy and was also baffled by my son. Despite having significant delays, he has above average stranger anxiety. He is however very attached to me and DH. The doctor said he doesn’t think it is autism as he is very attached and affectionate with us and has very good eye contact. He recently did some genetic testing ordered by the neurologist and they came back normal. The neurologist suggested getting a MRI but we are hesitant as he would need to be sedated. His PT is also baffled and doesn’t think it’s autism either. Of all his delays, she said the most worrisome is the lack of understanding about the concept of play. He doesn’t wave, point, nod or shake his head. He can babble. The only thing I can think of is intellectual disability. Any thoughts? Does it sound like he had this?

Who is taking care of him. Is it you or someone else. If it is not you, then you might want to reconsider and take care of him directly.
Mother usually has the best results when taking care of special needs child. Nobody is as invested and does a great of a job and give enough
attention and provides enough stimuli and the right exposure to the world like mom.

Agree. Go to therapy but watch and learn and do it yourself all the time. Make it your activity with your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My 17.5 month old has significant developmental delays. He’s not walking, still not pulling to a standing position, has not one word and most troubling is he doesn’t know how to play. He’s been in early intervention since he was 9 months old and he was recently evaluated by a developmental pediatrician. The doctor ruled out celebrating palsy and was also baffled by my son. Despite having significant delays, he has above average stranger anxiety. He is however very attached to me and DH. The doctor said he doesn’t think it is autism as he is very attached and affectionate with us and has very good eye contact. He recently did some genetic testing ordered by the neurologist and they came back normal. The neurologist suggested getting a MRI but we are hesitant as he would need to be sedated. His PT is also baffled and doesn’t think it’s autism either. Of all his delays, she said the most worrisome is the lack of understanding about the concept of play. He doesn’t wave, point, nod or shake his head. He can babble. The only thing I can think of is intellectual disability. Any thoughts? Does it sound like he had this?

Who is taking care of him. Is it you or someone else. If it is not you, then you might want to reconsider and take care of him directly.
Mother usually has the best results when taking care of special needs child. Nobody is as invested and does a great of a job and give enough
attention and provides enough stimuli and the right exposure to the world like mom.

OP, ignore this poster’s efforts to guilt working moms of kids with SN. Moms do what is best for their families over all and some kids with SN don’t even have moms! DD’s close friend has two dads —one of who has ADHD himself. He’s an amazing advocate for 2E kids.

Plus a million. Kids need caring caregivers. Working out of the home or in it will not be a deal breaker. Regardless of your situation, you’re making sound and difficult decisions. Bottom line you’re getting the help your kid needs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP have you looked in to the Hanen Method of speech therapy? It may help you to see ways that he is actually engaging with you that can lead to play/reciprocal communication. The PT's comment that she's concerned about his lack of play is kind of weird, I think. The main point is developing his communication skills and ability to interact with the environment. OTs (and maybe PTs too) can be a little woo woo and one of the woo things is about "the necessity of play" etc etc.

Please don’t minimize the importance of play. That is how children learn and develop. There is nothing “woo woo” about it.

No, your statement just confirmed the woo-woo nature of the "importance of play." Children learn and develop through many processes, and the fixation on play is just that, a fixation based on romantic notions of how children should be in nature. Play, like speech, is one activity that can look different in kids for a variety of different reasons -- motor skills issues, vision or hearing loss, coordination, autism, intellectual disability, speech delay, and so on. It's absurd that the PT would say that the absence of apparent play would be the most worrying thing.

[Anonymous]

OP I just want to share my story.

2.5 year old DD has a rare genetic dx (a gene mutation) which was discovered at around 20 months through a WES test. I would recommend getting one. The result gave us the 'why' for her delays but even without it the course is the same - intensive therapies to help her in gross motor, speech, attention and fine motor. I don't think there is any reason to do an MRI.

At 18 months she was not walking (walked 22 months), had very few words (mama, more, milk, dog) and didn't interact with toys with much interest. Even as a baby it was hard to motivate her using toys no matter how much they lit up or played music or anything. We really focused on therapy - doing speech, OT and PT for a mix of 8 sessions a week. Some was through EI (we are in NY) and some was private. DH and I both work full-time and we made it work.

Now at 2.5 she is still behind on gross motor and needs support - but walks and runs and climbs and jumps and can ride a scooter. She is still behind on speech - but puts together strings of words to say things like 'more oatmeal please' asks questions, can respond to ones like 'what's your name' 'how old are you' etc.

She is in a preschool with therapy support and does PT, OT, speech and special instruction each 2x a week. Her progress is slow but steady. We're still in the gray area not sure if it's intellectual disability or learning disability but either way our course forward would be the same. You're doing the right thing for your child by getting them help, stick with it and enjoy your child. Try to stay in the moment and help and appreciate them where they are today.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP have you looked in to the Hanen Method of speech therapy? It may help you to see ways that he is actually engaging with you that can lead to play/reciprocal communication. The PT's comment that she's concerned about his lack of play is kind of weird, I think. The main point is developing his communication skills and ability to interact with the environment. OTs (and maybe PTs too) can be a little woo woo and one of the woo things is about "the necessity of play" etc etc.

Please don’t minimize the importance of play. That is how children learn and develop. There is nothing “woo woo” about it.

No, your statement just confirmed the woo-woo nature of the "importance of play." Children learn and develop through many processes, and the fixation on play is just that, a fixation based on romantic notions of how children should be in nature. Play, like speech, is one activity that can look different in kids for a variety of different reasons -- motor skills issues, vision or hearing loss, coordination, autism, intellectual disability, speech delay, and so on. It's absurd that the PT would say that the absence of apparent play would be the most worrying thing.

Play may look different, but it is a critical part of development. But like speech can be addressed through practice.

Hanen is a great guide. It’s about child led communication whether at play or not.

[Anonymous]

Sending good thoughts your way, OP.

If you live in VA, your kiddo will very likely qualify as eligible for preschool special education services. You would go through your local school district's Child Find office to set up a meeting to discuss evaluations. Request a full eval (Developmental, Speech, OT, PT) to get the process rolling. Once your child is found eligible, you would have an IEP meeting. To help meet your child's needs, your child may receive related services, such as speech, OT, and PT at school. If this is what your child needs, advocate for those goals and services from the start. It is a long process, so you could start it when your child is close to 2.

You could still pursue outside private therapies, too if you wish. Just sharing potential options.

Good luck with your choices about the MRI and genetic testing. As others have said, answers gleaned from those may not change the course of treatment. However, the info may give you more leverage with schools and insurance companies to provide more therapy.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP have you looked in to the Hanen Method of speech therapy? It may help you to see ways that he is actually engaging with you that can lead to play/reciprocal communication. The PT's comment that she's concerned about his lack of play is kind of weird, I think. The main point is developing his communication skills and ability to interact with the environment. OTs (and maybe PTs too) can be a little woo woo and one of the woo things is about "the necessity of play" etc etc.

Please don’t minimize the importance of play. That is how children learn and develop. There is nothing “woo woo” about it.

No, your statement just confirmed the woo-woo nature of the "importance of play." Children learn and develop through many processes, and the fixation on play is just that, a fixation based on romantic notions of how children should be in nature. Play, like speech, is one activity that can look different in kids for a variety of different reasons -- motor skills issues, vision or hearing loss, coordination, autism, intellectual disability, speech delay, and so on. It's absurd that the PT would say that the absence of apparent play would be the most worrying thing.

Play may look different, but it is a critical part of development. But like speech can be addressed through practice.

Hanen is a great guide. It’s about child led communication whether at play or not.

"Play" doesn't really have any normative meaning, though. My child with autism does not "play" in a way that looks like typical play, but his play is just fine. I have zero interest in making him pretend play in order to meet some imagined critical stage of development, or whatever. The important thing is that he is developing communication and motor skills, and can do the things he likes to do. I find the concept of play pretty much useless, and inevitably anchored to an ideal of how NT children play.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP have you looked in to the Hanen Method of speech therapy? It may help you to see ways that he is actually engaging with you that can lead to play/reciprocal communication. The PT's comment that she's concerned about his lack of play is kind of weird, I think. The main point is developing his communication skills and ability to interact with the environment. OTs (and maybe PTs too) can be a little woo woo and one of the woo things is about "the necessity of play" etc etc.

Please don’t minimize the importance of play. That is how children learn and develop. There is nothing “woo woo” about it.

No, your statement just confirmed the woo-woo nature of the "importance of play." Children learn and develop through many processes, and the fixation on play is just that, a fixation based on romantic notions of how children should be in nature. Play, like speech, is one activity that can look different in kids for a variety of different reasons -- motor skills issues, vision or hearing loss, coordination, autism, intellectual disability, speech delay, and so on. It's absurd that the PT would say that the absence of apparent play would be the most worrying thing.

Play may look different, but it is a critical part of development. But like speech can be addressed through practice.

Hanen is a great guide. It’s about child led communication whether at play or not.

"Play" doesn't really have any normative meaning, though. My child with autism does not "play" in a way that looks like typical play, but his play is just fine. I have zero interest in making him pretend play in order to meet some imagined critical stage of development, or whatever. The important thing is that he is developing communication and motor skills, and can do the things he likes to do. I find the concept of play pretty much useless, and inevitably anchored to an ideal of how NT children play.

(also, LOL at the idea of play being developed through adult-guided "practice." that's pretty much antithetical to what play actually is, defined as people just enjoying their environments and activities. while adult-led play may certainly have some role in therapy, it's certainly never ever going to be the "most concerning" issue, as OP's PT told her.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Sorry meant to say cerebral palsy. Did not proofread what I wrote and just hit send.

We did do genetic testing and they came back normal. The development pediatrician said that the MRI would be able to tell if there are any structural issues with the brain. We have an in person visit with the neurologist to get a more thorough physical examination. The pediatrician doesn’t think he has neurological issues but he thinks it’s worth checking out. Based on his cognitive and physical abilities, he puts my son at the 9 month old mark.

Normally I'd say no to an MRI but I'd do one in this situation. Hopefully the neurologist will help. I'd also try to get private OT, PT and ST if your insurance will pay.

I have a different opinion. The MRI would not reveal any information that would change the treatment, and it does post risk and expense. I declined an MRI for those reasons (different symptoms but the MRI was not going to make a difference in the course of treatment.) Ask the Dev Ped and neurologist what knowing about "any structural issues in the brain" is going to do other than satisfy their own curiosity/desire to "do something." MRIs are for when you think there's actually something to operate on (like a brain tumor) not just delays, in my opinion.

Correct, what do the specialists hope to get from the MRI?

[Anonymous]

Good luck, OP. This must be a very stressful time for your family. It sounds like there are decisions to make (like MRI or no), which I find stressful. I hope the right answers come easily to you. Thinking about you.

[Anonymous]

OP here. Thank you all for your responses.

I should clarify or give examples of what I meant by he doesn’t know how to play. From what I understand, cognitive development can’t be measured directly so they use play and social interactions to gauge how cognitive development is progressing or not. At 17.5 months, DS does not put things into a container. Forget about shape sorters. He plays by spinning things (a small plate, a lid, a ball) and loves picking and dropping those things. He likes the baby musical toys that lots up. That’s the extent of his play. Tried reading to him and after two pages, he would close the book and treats it as a toy.

He is in an all day preschool (daycare center) in the toddler’s class. His teachers reported that he is unable to do things the rest of the class does. Painting with a brush for instance , or other sensory play like running a toy car over whipped cream. His PT and teacher from early intervention visit him at school as their approach is a coaching model. I can see why the developmental pediatrician puts him at 9 months as far as physical and cognitive development is concerned.

I just feel like there is something more to this global delay. I understand “intellectual disability” is a nicer term than “mental retardation” and it is very general umbrella term for a number of things. He is too young to get evaluated for a lot of things but if I read the early symptoms of intellectual disability, he seems to check all the boxes.

Some of the questions that were asked of us include if it was a normal pregnancy and yes it was. No alcohol consumption or drugs. I was asked if he has seizures, and no he doesn’t. He doesn’t wake up screaming either (apparently this happens if there is swelling in his head).

He is otherwise a more or less happy baby. Very sweet and loving, to us parents, at least.

[Anonymous]

A lot of kids cant do those things at that age. Your day care teachers are not being realistic. A child under two should not be pinging with a brush. I would do the MRI at this point, personally.

[Anonymous]

Hi OP -

Did you say you saw a neurologist? Did s/he want to do an EEG? Did the neuro want to do an MRI?

I would think the neuro would be the one to opine on the MRI, not the developmental ped. Ignore the people who are trying to scare you off from doing an MRI. Mom of a kid with a seizure disorder here whose kid has had 2 brain MRIs, one was sedated at a young age. Plenty of young kids get sedation every day. I don't know if you need the test or not, but if you do, you get it. I personally would think it would be useful to see if there has been a stroke.

It's interesting that you were asked about seizures. Which doctor asked? Did they want to test? Not all seizures are obvious. Some occur while sleeping and some are very quick absence ones that are hard to notice especially with a very young child. Some kids are even in a near constant state of seizure. That's definitely something you would want to know, so I would ask the neuro about doing an EEG.

Keep looking for answers. Knowledge is power and can give you direction. Sometimes you have to get second opinions or go to a better hospital or travel to get answers. Hopkins is very good.

[Anonymous]

Anonymous wrote:A lot of kids cant do those things at that age. Your day care teachers are not being realistic. A child under two should not be pinging with a brush. I would do the MRI at this point, personally.

Please don’t mitigate her concern. You may think you’re being reassuring but you’re gaslighting her into believing her very valid concerns and her knowledge about her own child are wrong. They are not. Kids can play and point and speak and move at this age. She is right to be concerned and right to be proactive. EI is critical at this age and people saying “lots of kids don’t talk or play or walk until 4 and then they’re in AP in high school” do parents and kids a disservice by convincing them to wait and see and waste that precious time.

[Anonymous]

Anonymous wrote:

Anonymous wrote:A lot of kids cant do those things at that age. Your day care teachers are not being realistic. A child under two should not be pinging with a brush. I would do the MRI at this point, personally.

Please don’t mitigate her concern. You may think you’re being reassuring but you’re gaslighting her into believing her very valid concerns and her knowledge about her own child are wrong. They are not. Kids can play and point and speak and move at this age. She is right to be concerned and right to be proactive. EI is critical at this age and people saying “lots of kids don’t talk or play or walk until 4 and then they’re in AP in high school” do parents and kids a disservice by convincing them to wait and see and waste that precious time.

No one is mitigating the concern but the preschool teachers are not being developmentally appropriate to think that age can paint.