Nothing more frustrating than an MD who says "Don't worry about it"

[bright sparks]

So some of you may remember that I had a 3.5 dcb start with me 4 weeks ago who is significantly delayed. He is with me until school starts in September in the hopes of getting him socialized and caught up as much as possible.

So last week I had a telephone conversation with Nana about some of my observations. Primarily that he doesn't eat, he does not ever verbalize his needs, and that he becomes agitated and very clearly anxious when food is presented to him. He shrieks and displays stims when he is visibly and obviously stressed about doing something he doesn't want to do even if it is not a request to do something that any typical kid would show resistance to. I thought it might be a good idea to pay a visit to the family dr and she agreed as he was due a development check. So how frustrating when Nana comes this morning and the family dr has said he is absolutely fine and not to worry about anything. He did not offer any advice what so ever or offer any resources to help with any of the issues, another big one being that he is not toilet trained, and isn't even psychologically ready to.

I may not be considered a "professional" when it comes to child development, but lets be clear, a family doctor isn't an expert either hence the name "general practitioner" and to be able to establish that a child is absolutely fine even when being presented with x amount of information and meeting with that child for all of 10 minutes really isn't adequate or accurate IMO. I was hoping for a referral to a paediatrician at the very least for more in depth assessment but apparently this child is absolutely fine.

I've done all I can and fortunately he is a great kid, no behavioural issues that are disruptive and having had experience with children on the spectrum I have found some ways to work with his specific needs which seem to be having a positive impact so far. With no professional support for him though, I pray that his Nana will still send him to JK even though he probably won't be toilet trained, because at least then they will flag him and get him help. If she with holds sending him, I fear that things will escalate making it more difficult to help him as he gets older. Hopefully these are just delays that being at school will no longer be an issue with the right support versus an actual condition which left unattended to could turn into a much greater problem.

Out of curiosity, has anyone ever toilet trained a child with any kind of learning disability or special need? I'm not talking about a stubborn child or one going through some behavioural issue which would be considered normal 2 and 3 year old behaviour. I'm more interested in how people approach toilet training when a child's mental capacity to do so is outside of the norm. I want to help him, but he's like a 1 year old when it comes to this. I have 2 who will be training in May/June aged 2y 4 mths and I'm going to be using potties so I am hoping that this will be something he will be willing to try but he doesn't have any initiative to even pull his pants down. I've been making him do it for diaper changes, pull down and pull up after. The 2 year olds who I have never asked once to do this, now do it automatically because they are mirroring it, but 3.5 dcb just looks at me with a blank expression and has to be repeatedly told. He stands in front of me and I have to constantly cheer him on to do it just to keep him focused and his attention to what is going on. Even then, he can not pull his pants up over his bum...ever, and pull down is only 50% of the time successful. We have been at this for 3 weeks and I will continue, but this is just one small aspect of training and a skill he must have prior to starting and at his age, this should be something he gets quickly. (((sigh))) I could go on and on about things toilet training related and otherwise. I'm not a fan of comparing kids, and having my own son who is now 12 but who was delayed in speech I try to keep an open mind, but when my 18 mth old dcg can do all the things he can not, it's hard not to see his delays as even more significant.

I'm just going to keep on trying.

[flowerchild]

That is frustrating!

How does Nana feel about it? Is she frustrated too? Would she go back to the doctor with a detailed letter from you outlining your concerns? I wondering if Nana may not have been as informative as she could have been with the doctor?

Are there any community agencies that she could self-refer to?

[bright sparks]

That is frustrating!

How does Nana feel about it? Is she frustrated too? Would she go back to the doctor with a detailed letter from you outlining your concerns? I wondering if Nana may not have been as informative as she could have been with the doctor?

Are there any community agencies that she could self-refer to?

I think there is a good chance that Nana didn't pass on all the specifics to the dr. You know how it is with anyone when we are given a lot of information sometimes we don't retain it all. In hindsight I should have given it her in writing to take with her.

Nana said to me that if the doctor isn't worried then she isn't either. So if I were to follow up with her with a bunch of resources and a written report of my observations at this time, I think it may just be stepping over the line a little. Whether I like it or not, she has told me she isn't concerned and she did follow up on my request to see a dr who has said that he is fine. My plan of action is to continue documenting my observations and then maybe in a couple of months if there are no improvements then I will give her something in writing. Unfortunatly, the dr said that it is really normal for 3 year old boys to do things on their terms and work on their own timeline. I get it, I really do having a boy of my own, but delays accompanying other behaviours turn into clusters which are red flags so would raise an alarm bell that perhaps this isn't a straight forward late bloomer and some further assessment can not harm to be looked into. Now this dr has planted something in Nana's head that is like saying "how long is a piece of string?" At what point is it cause for concern? In the US they aim for early detection prior to age 3 because there is a lot they can do in terms of catching these kinds of things at a crucial time when they can have a much greater chance of reversing and repairing things. Seems here in Canada, the framework in place is a lot of, lets wait and see.

[Lee-Bee]

Doctors can only respond to information presented clearly. If the grandparent didn't advocate and be clear about the concerns then the doctor would likely miss most things in a short doctor visit. Do you feel confident the information you have observed was presented as needed? I would suspect that at this point in time the grandparent likely still isn't advocating for the child needs.

I wouldn't give up your efforts because the doctor hasn't acknowledge your concerns. You, as one person, can only do much but what you do will make a difference.

As for toilet training I would look for visual pictures to help the child express his needs and for the child to consult for every step of the toileting process. I've used PECS in the past in school/daycare settings but you can likely find all sorts of good pics online to use.

[playfelt]

In Ottawa we have things like First Words that will do an assessment of speech and offer suggestions. At the same time they will identify if they think there is more to the issues than just delayed speech. Coming from someone outside the situation often holds more weight with parents. The doctor wouldn't have experienced a lot of the issues you mentioned in a normal visit - especially anything related to food.

For the potty training it is often one of those things you teach the same as teaching them to use any toy. Start by routinely taking him and putting him on the potty - use the regular toilet and not a little potty since he doesnt' adjust to change best to start with a "real" toilet. If he goes fine and if not fine. If he doesn't go try him again in 20 minutes. If he goes try him again in about 45-60 minutes. It will just come with time to teach him the words to use but for several months it will be you initiating the potty trips and not him.

[Busy ECE mommy]

I do a Nipissing screening and an Ages and Stages screening at all developmental levels. I give it to the parents with a specific list of strengths and goals. If there are "red flags" I also write a letter outlining those items and suggest pedeatrician referral and I refer to a community agency who does drop-in screenings with resouce consultants/speech/OT etc. I have run into the same problem. I have several who I'm 99% sure are along the ASD lines, and the doctors say they're fine, but they miserably failed the Ages and Stages checklist. I have a child here who is 4, and is very similar-doesn't understand directions, can't use toilet, can't dress/undress anything, no role play, no verbal with peers etc. The child is headed off to school in the fall, and I hoped he would be identified before then to have supports in place, but doctor says he's fine, so parents won't go see community agency, who I know would pick up on all of this. I would do an ages and stages evaluation, as it is so much more thorough, and refer to a community agency(check your early years centre listings as they often will have clinics or can tell you who to refer to in your area)

[Teagansmom]

Bright sparks, I know how frustrating it can be. It's hard also to know if parents are expressing all of our concerns to the physicians. It's natural for parents to built up their kids and many are in denial of a lot all again natural. However it's frustrating to us as providers when we don't know how to deal with these specific concerns. It's sad when we have to let the school system voice these concerns and advocate for the child when sometimes prevention early on is key.

[bright sparks]

Doctors can only respond to information presented clearly. If the grandparent didn't advocate and be clear about the concerns then the doctor would likely miss most things in a short doctor visit. Do you feel confident the information you have observed was presented as needed? I would suspect that at this point in time the grandparent likely still isn't advocating for the child needs.

I wouldn't give up your efforts because the doctor hasn't acknowledge your concerns. You, as one person, can only do much but what you do will make a difference.

As for toilet training I would look for visual pictures to help the child express his needs and for the child to consult for every step of the toileting process. I've used PECS in the past in school/daycare settings but you can likely find all sorts of good pics online to use.

I know at Halton resource centre they have a program where they have visuals that can be made into books or stuck up in places as queues. I'm not sure of the name of the program but it sounds similar. I may reach out to them also for support.

[bright sparks]

In Ottawa we have things like First Words that will do an assessment of speech and offer suggestions. At the same time they will identify if they think there is more to the issues than just delayed speech. Coming from someone outside the situation often holds more weight with parents. The doctor wouldn't have experienced a lot of the issues you mentioned in a normal visit - especially anything related to food.

For the potty training it is often one of those things you teach the same as teaching them to use any toy. Start by routinely taking him and putting him on the potty - use the regular toilet and not a little potty since he doesnt' adjust to change best to start with a "real" toilet. If he goes fine and if not fine. If he doesn't go try him again in 20 minutes. If he goes try him again in about 45-60 minutes. It will just come with time to teach him the words to use but for several months it will be you initiating the potty trips and not him.

They have first words here too. I had a child go into their program and it worked wonders. This little boy I care for currently is verbal and has words but it's the manner in which he speaks and his lack of comprehension that is the issue. I actually don't even think its as straight forward as comprehension, maybe more of an attention thing or a processing/working memory issue...who knows.

This fella has been on the toilet before and is familiar with it. Nana and family tried to toilet train at 2 1/2. He is familiar with the toilet and is okay with change. There was no issue with transitioning here with complete strangers. His Nana tells me they went the underwear route and he wouldn't use the toilet. He would sit on the toilet for 20-30 minutes without doing anything and then straight away after they were pulled up he would go. She said that if they sat him on the toilet with his underwear pulled up, then he would pee through his underwear on the toilet??? He is in pull ups now. He doesn't falter when he poops, doesn't hide, doesn't slow down, doesn't stop what he is doing, doesn't tell me he is doing it and doesn't tell me when he is done. In this respect he is like an infant. I ask him if he has pooped and every time tells me no. I have put him on the toilet a few times here and he has never gone, but immediately goes in his pull up after. If this child was 2 years old, his disinterest in toileting would be a huge indicator that he wasn't ready. He doesn't seem to be psychologically ready to train. When I put him on the toilet, and I tell him to stay on the toilet, but then give him so privacy, he becomes agitated.

[bright sparks]

I do a Nipissing screening and an Ages and Stages screening at all developmental levels. I give it to the parents with a specific list of strengths and goals. If there are "red flags" I also write a letter outlining those items and suggest pedeatrician referral and I refer to a community agency who does drop-in screenings with resouce consultants/speech/OT etc. I have run into the same problem. I have several who I'm 99% sure are along the ASD lines, and the doctors say they're fine, but they miserably failed the Ages and Stages checklist. I have a child here who is 4, and is very similar-doesn't understand directions, can't use toilet, can't dress/undress anything, no role play, no verbal with peers etc. The child is headed off to school in the fall, and I hoped he would be identified before then to have supports in place, but doctor says he's fine, so parents won't go see community agency, who I know would pick up on all of this. I would do an ages and stages evaluation, as it is so much more thorough, and refer to a community agency(check your early years centre listings as they often will have clinics or can tell you who to refer to in your area)

I do the Nipissing screening tests also with all my kiddos, usually in line with when they go for developmental checks as a way of communicating observations made at daycare to pass on to the doctor. He had only been here 3 weeks when I spoke to Nana and I didn't think it would be the best tool during a child's transition as the milestones may not have been observed honestly in a child who was finding their feet. Like I said in an earlier post, I don't feel like I can push this subject any further just yet. I'm going to document everything ongoing and do the assessments regularly including working on age appropriate skills. In a couple of months I will pass the info on to Nana, but in writing this time including the checklist.

I imagine being in her shoes and at a new daycare setting. The provider continuously tells me in one way or another that there is "something wrong" with my child (which is exactly as it will be received regardless of how I word it), and all while the child has only been in the setting for 4-6 weeks. Nana goes to seek a professionals opinion and is told not to worry but the daycare provider continues to question the dr. That would piss me off as a parent. While I have a great relationship with Nana already, to much to soon could have negative side effects and could actually push her away making her less cooperative. She wasn't defensive and spoke quite frankly last week with me about whether the doctor will find any delays warranting a referral to a Paediatrician. She certainly didn't have the typical denial attitude of "Not my kid" which so many naturally have. I think a little time in between bringing this up again, to observe more and work on things is my best move moving forward. Maybe revisit this with her in May.