Quirky DS1 - not sure what we should do

[Mami_Feliz]

DS1 (nearly 6) is very quirky and I’m not sure where to go with it. We haven’t looked for a diagnosis yet, partly as we live in a country where there aren’t many resources for this.

He has been in two preschools, including the one he is in now. Both have made it clear that something isn’t quite right. The place he is in now is very small, multi-age (he’s the oldest) and very nurturing. We have an ongoing conversation about him and they accept him and work hard to accommodate him. So, that is great.

Recently a couple of people (good friends) have mentioned that he reminds them of nephew/friend’s kids who are on the spectrum. This shocks me a bit and has me thinking that we are so used to him that we don’t really see things as they really are.

So, I’m just not sure what to do now. This is his last year in the school. Next September he will have to start proper school. Homeschooling is not common here and since absolutely all children go to school there is no one to visit with during the day, so I think it would be very lonely for him (I also work part-time).  He is a bit clumsy in his interactions but loves other kids. However, most kids start full-day public school here at the age of three (!). So, by six they are pretty wise. He is going to be a long way behind socially. I’m wondering if I should give him a go in football classes or something like that in order for him to be with bigger kids in a more school-like environment. Or, am I just trying to make a square peg fit into  a round hole? Or, alternatively, I am over-protecting him?

A few things about him:

• He is very sensitive to his surroundings: noise, light etc
•  He is clumsy interacting with other kids – doesn’t know when to stop, tends to annoy, misses the subtleties etc (but loves being with other kids)
• He is very intense emotionally. When he is excited he nearly explodes and when he is frustrated he can be very violent (very remorseful afterwards)
• His motor skills and coordination are not very good. He has improved a lot over the last year but is still prone to tripping over more than the average kid.
• He seems to have an “off” switch. When he switches off he is in a complete world of his own – doesn’t hear anything, doesn’t answer, no eye contact and he just looks completely absent. Those are the moments that I do see that all is not quite right.
• He is very scared of many things and gets anxious very easily.
• He fidgets A LOT
• He won’t just join in when other kids are doing an activity if it’s not extremely interesting to him
• He often talks too loudly

He is also extremely verbal, loves making and creating things and has a million interests. When his switch is “on” he is full of wonderful ideas, sociable, empathetic and maintains good eye contact. He can play for long periods by himself and has the ability to focus on a specific interest for a long time. He is also generally a happy and optimistic person.

So, what’s my question? Well, I’m not sure. I’m very lost right now. Should I seek a diagnosis? Should I encourage more peer interaction in preparation for big school? He's a truly wonderful little boy and I have no desire to try to make him into something he isn't, but it seems that society here doesn't quite work that way and I am worried that he ends up disadvantaged by our choices. Anyone with a similar experience?

Thank you if you made it this far :)

[FarmerBeth]

I don't know what you have available in your country, so my answer is a bit limited.  I can tell there's enough going on that you seem worried, so I think you should go ahead with an evaluation (especially since the teachers also seem to think something's up).  It won't hurt to get more information.  I don't think it's making him fit in or being someone he's not, it's just giving you some information that can help you be a good parent to him and help his teachers.   I just had my DS diagnosed as on the spectrum at 11 years.  Everyone is so different I wouldn't be able to say if someone else's kid was (and that's even though I work with special needs kids), although like everyone, I guess I get gut feelings, sometimes.  Anyway, I have to say I've never regretted information (even some information that didn't quite point to the right diagnoses in the past), but I do have some regrets about times that I didn't heed others' observations and get some more help with my son, earlier on.  It's so much less complicated to figure out any issues, sooner. Your son might not have any issues but maybe shyness or the like, and an evaluation might help make you aware that things are OK, too. You can't tell unless you have more info to work with. And I think getting him out socializing with other kids will help a lot right now, too, but choose the situation wisely, with adults that you think will work well with your son and with situations that are a bit of a challenge but not overwhelming to the point he shuts down (provide "scaffolding").

[melissa17s]

I think you need to take your list to your pediatrician and ask them to refer you to a specialist, such as neurologist, developmental ped, or someone in the psychiatry field.  My ds has similar characteristics to yours, but mine is not on the spectrum.  Instead, he has epilepsy, adhd, and dyslexia.  I think getting professional help will help you sort out what works better for your ds and plan for the future.   If possible ask for a referral to an Occupational Therapist.  They can work with some of the physical issues like the balance, motor skills, and sensory.  

I would sign him up for football, if he wants to play it.  Physical activity does help those coordination issues.  If he does not like football consider swimming, tennis, or something that he is ok with.  

[Emmeline II]

This sounds like my ds who ended up with an ADHD/SPD diagnosis; he has some spectrumish behaviors but the doctor wasn't ready to definitive diagnose him as Aspergers.

I don't know what services you have access to, but I recommend a developmental-behavioral pediatrician led team; this is where we took ds. 

In the US it can take months to see a developmental-behavioral ped, so while we were pursuing that we took ds to a psychiatrist.

It seems that your ds has problems with social reciprocity and pragmatics--here that would be treated by a speech therapist. Sensory sensitivity would be treated by an occupational therapist.

[fizgig]

I don't personally have experience with this kind of thing but I do have a close family friend whose son sounded very similar to yours when he was young (before I knew them).  I would agree with everyone here that you should probably get him to a specialist - I would suggest just going right to a developmental pediatrician to get the best care without waiting.

The only reason I would suggest a little bit of a rush is because your description of his "off switch" seems worrisome to me.  our friend's son turned out to have epilepsy and autism.  It is the epilepsy that is concerning and his seizures sound similar to what you describe - he would shut down for a short time then, after the seizure, he would be sort of out of it, in his own world.  Again, I wasn't there so I'm just going based on his mother's description but sounds close enough that I would want to just make sure that isn't what is happening.

I hope that helps! Hugs to you.

[Tigerle]

Your son sounds somewhat similar to mine EXCEPT for the "switching-off" you describe. We have had him evaluated for ASD and while they think he has some spectrumy traits full-blown ASD has been ruled out for now. Sometimes it feels that by actively searching for answers you are making things "come true" that before you were only afraid of, but an eval can alos give you some peace of mind, that you haven't overlooked anything or been in denial. Our son has also made huge strides in socio-emotional devellpment the last year (we see a significant regression with pre-school starting again, so I can tell a lot of it is just a very sensitive child's reaction to a socially demanding environment).

I also live in Europe so understand your concerns about limited schooling options in a society that encourages uniformity in education. I wonder, though, what makes you so sure that his not having gone to public pre-school makes coping in public elementary school harder for him? He may have needed the more protective environment in order to thrive. He may thrive in another environment at some point.

I would start out with finding anwers about the "switching off" because that is the one thing that sounds really worrisome. Then move on to other concerns, saving public school for last.

[applecider]

Wow, your list about your son sounds almost EXACTLY like mine. I too don't know just what to do. Mine just started first grade this year and while he did alright in K, it was only a half-day program and he had an awesome and understanding teacher. This year, I'm not so sure about his teacher. What you call "turning off" may be what I call "zoning out". For instance, we'll be lying in bed after lights out (I will lay with him for a bit) and I say, "DS, do you want covers on?" Silence. "DS?" He'll say, "what?" I'll say, "do you want covers on?" Silence. "DS, are you listening??" "What?" This happens MULTIPLE times during the day. Like he is just totally oblivious to anything coming out of my mouth.

Anyway, this year, granted we've only had about 5 days of school yet, his teacher is already taking away recess and his sharing time because he is not getting his daily work done.

I feel like I think I would like to get an evaluation, these are things I've been thinking about for several years now. I've always known he was "different" and I knew that as he got older it would become more pronounced. I do have the books "quirky kids" and "problem child or quirky kid?" from the library so I'm going to read those (again!) and see how I feel.

[melissa17s]

Applecider, The zoning, spaced out, turning off, or tuning out can be a characteristic of both adhd and some partial or absence seizures.  We have had difficulty in the past year figuring out which ds was dealing with.  One way to test- informally- try to startle the kid when they are zoned.  Yell uncharacteristically loud, pat or pinch their cheeks, drop a book or something that should get a response.  If they respond, then this is more an attention issue, like adhd.  In our case, when ds does not respond at all, it is seizure.  

[Emmeline II]

Originally Posted by applecider 

Anyway, this year, granted we've only had about 5 days of school yet, his teacher is already taking away recess and his sharing time because he is not getting his daily work done.

I feel like I think I would like to get an evaluation, these are things I've been thinking about for several years now. I've always known he was "different" and I knew that as he got older it would become more pronounced. I do have the books "quirky kids" and "problem child or quirky kid?" from the library so I'm going to read those (again!) and see how I feel.

I would do what you can to fast track an eval since the school seems to be viewing him as simply "naughty" and punishing him for it.

It seems that a lot of schools see recess as a reward instead of a necessary break -- I don't think any recess time should be taken away except for issues AT recess.

Edited by Emmeline II - 9/15/11 at 7:25am

[Mami_Feliz]

Thank you so much for your replies and for the PM. It's very interesting to hear your experiences and lots of things to reflect upon. Yes, Applecider I would definitely also call it "zoning out". He is capable of "coming back" if something very interesting is happening. Also, I sometimes say "hey, better get you to the doctor and get your ears checked" and he always answers me then, so I'm fairly sure that it isn't a more serious physical issue. However, we have a pediatrician appointment next week, to hopefully rule out anything physical.

Yes, I think an evaluation really would be very useful now. I do go between hoping I'm not in denial and feeling guilty for thinking he's so "different". So, it surely is time for some objectivity. I hope it would help us to understand him better and also avoid any him being labelled as "naughty" at school when he gets there. I think I may take some time in the Spring to seek an evaluation in the UK, which is where I'm originally from.

[Emmeline II]

Originally Posted by Mami_Feliz 

Yes, I think an evaluation really would be very useful now. I do go between hoping I'm not in denial and feeling guilty for thinking he's so "different". So, it surely is time for some objectivity. I hope it would help us to understand him better and also avoid any him being labelled as "naughty" at school when he gets there. I think I may take some time in the Spring to seek an evaluation in the UK, which is where I'm originally from.

I'm not sure how this would be arranged this but I'd look into how it would work, now. Getting an ADHD diagnosis in the UK seems to take time; sometimes 2-3 years, particularly with younger children. Sometimes parenting classes are required before seeing a specialist, and the school/teachers' evaluations are weighed heavily--though this may not be the case if you were doing it privately.  This isn't my own experience, just what I've picked up from UK posters on another board.