Just venting a bit

[Minty80]

I'm pretty sure I've mentioned my kids around here before but I've never gone into much detail.

 

I have a 5yr old son and a 3yr old daughter. My kids are both awesome shorties (their nicknames, big shortie and little shortie). They are generally fun to be around, totally crazy, and make me smile everyday.

 

My son can be a challenge though, and reading the articles that were on the front page the other day sorta brought all of it to the front of my mind again. See D has some sort of developmental disability. We have no exact diagnosis, despite the many docs he's seen. It's gone from PDD (pervasive developmental disorder) to outright autism, to his latest doc saying the autism diagnosis for him is bunk and that it's severe developmental dyspraxia with a speech delay and maybe some adhd thrown in.

 

All I know is that he's been in special ed for over 2 years now and isn't making close to the progress that was projected when he started. He can talk, but not to the level that my 3yr old can (though she's a total chatterbox anyway), he can write his name, and he kicks my butt on any videogame we've played, heck I use him to figure out the puzzles that I can't. At the same time he hasn't been able to pottytrain, he can't understand almost any concept that isn't completely concrete (if I can show it to him he gets it, if it's something that can only be explained with words it's hopeless), he has trouble controlling any sort of impulse he gets, he's generally speaking way behind kids his age and even those a year or two younger.

 

The thing is that I feel like I'm always dealing with two kids. There's the D I know, who when we are at home or just hanging out is a really cool kid. He sports a mohawk after begging for one and I probably have the only 5yr old who I can bribe with a promise of letting him wear the mohawk up. He loves to play drums and listen to music. He can be a handful and hard to control at times but it is my norm that he is like that and it's never so bad that I can't deal. In fact as he's gotten older he's become the more mellow of my two.

 

Then there's the D who I deal with when talking to the school or his docs. The one who isn't meeting anyones expectations, the one who is broken and needs to be fixed. The one who I have no clue what will happen to him when he moves to his special ed kindergarten this year. The one who is defiant and hard to control because he doesn't do well in group settings and needs one-on-one attention but it's hard to get because apparently his disabilities don't quite warrant that.

 

And then I cry, because this isn't what I pictured. And because I want everyone else to see the awesome kid that I see. But no one else sees that, they just see his disability. No one deals with him as closely as I do so they never seem to learn to really relate to him. Like how someone will ask him a question and he won't be able to answer (he has almost no grasp on answering why or how type questions) but I know how to word it in a way that he can. Or how he so badly wants to play with other kids on the playground but because he has trouble talking with them they run away or tell D to go away. Because of his lack of speech he can be hard to get to know. He seems standoffish because he can't interact well, but he loves hugs and playing pretend, he thinks it's hilarious if someone burps, if his sister is being a pest in the car he'll tell her to stop or that I'll turn the car around, he loves for me to snuggle him to sleep each night, and so many other things that you can't see unless you look past the lack of speech and impulse control to the kid who is really there.

 

Then I cry because I don't know what to expect for him and I just want to keep him home with me and around people who do understand him. I worry everytime we get into a new situation because I know I'll have to explain and then people will treat him differently. Or I will just not be able to bring him along because no one will understand or even try too. I also cry because there are so many things I wish I could do with him but while he's the right age he's not emotionally or mentally able to do that stuff. And I worry about what will happen down the road? Will he really get past this like I keep being told or will he always be so far behind and never able to normally interact with society?

 

I keep reading articles and books where parents learn to accept this and move on but I just have never been able too, not completely anyway. I mean when it's just D at home it's not even an issue. It's just everytime we have to go to yet another doc or another IEP meeting that these issues come up for me. I just want everyone to know the kid inside, the one who seems trapped by his lack of speech. I know that kid and he's awesome, but almost no one else does. And I hate that, I hate everything about it.

[sonjam]

Minty, this must be really hard for you and also for D. I guess hes a "spirited child".

 

Little things you can do, is warn him, and prepare him well in advance for change. Kids like that feel very safe in their routine environment, and does not take well to change. Do sort of a little count down before going anywhere, or introducing net things to his environment. A friend of mine also have a little boy diagnosed with ADHD, and all sorts of problems. Hes been in a special school since he was small, he's gone for speech therapy, etc, she refuses to put him on medication, but prefers to take him for therapy, becouse as you can imagine, he's very frustrated, and thus very agresive.

 

He's 11 now, and is turning into a bright young boy. He still struggles a bit, but not half as much as he used to.

 

I guess what I want to tell you is don't give up. He is God's child as well as yours, and God has a path layed out for him. Everything will be ok.

[ComputerGuy]

I'm not a doctor so I can't say anything for sure...all I can do is base things on my personal experience and judgement. Also I apologise, when i started writing this I never thought I'd make it this big.

 

While he has clear learning difficulties and speech problems, he also appears to have extremely high problem solving abilities (if at 5 he can do puzzles you can't, that is way above average) and the fact he kicks your butt at computer games shows he also has very good spatial and relativity judgement. Having to show him something so that he gets it is another thing that stood out, and his social problems as well.

 

All that to me suggests Autism...every case Ive red of autism has had a kid with extremely high problem solving/spatial abilities (as your child does), behind in speech and basic things like toilet training etc (again, same with your child) and almost ALL autistic kids get stuff once they are shown, but words just don't cut it. The fact you mention if something isnt completely concrete he doesn't get it...well from my experience, again, autistic children usually need things to be sound, certain, and unchanging. Is he affected badly by changes in normal routine at all? That could be another thing to help identify this part of things. Autistic kids also have social problems growing up, which explains his unruly behaviour.

 

The ADHD thing I believe in your sons case is being misinterpreted, I believe his behaviour could be out of frustration from not fitting in, upset at slight changes in his school routine, as well as frustration/boredom in regards to what he is being taught, because as you said...you need to show him for him to get it.

 

My advice would be to say flat out to your doctor...Look, I think he has autism, I've had 3 different opinions on him and I just want to try something (I say see a doctor because I dont know if being wrong will do more harm than good in relation to what I'm about to suggest).

 

Here is my suggestion on things:

 

School:

Explain to his teachers exactly what is happening as well as speak to the headmaster of the school. Suggest that you have him do a set routine, every dsay, same thing at the same time, for a week. After that week, randomly do something in a different order (If reading comes before maths for example...get the teacher to switch it around) see how he reacts to this. Also, get the teacher to spend some time with him showing him stuff as opposed to trying to teach it the traditional way. Try, for example, getting those counters, or an abaccus (spelling and show him that one bead + one bead = 2 beads...show it to him so he can see proof that 1 bead + 1 bead does in fact make 2 beads. The show him it on paper using objects...DRAW the beads, and point out to him that the picture represents the bead...then from thre try to substitute the beads for numbers directly below it...line it up so he can see one bead and the number 1 mean the same thing.

 

Home:

You said he helps you with puzzles and beats you at computer games correct? Well I suggest then that you get some educational computer games for english and maths...ones that involve problem solving and a lot of pictures. If he is doing puzzles and playing computer games with you, I take it he likes them, so this could be a beneficial way for him to learn while doing two things he likes. The fact that he is also good at these will give him a sense of achievement which should help alleviate any feelings of inadequacy due to feeling "dumber" than the other kids.

 

Socialising:

OK this is a trickier one. He is, at some point, going to have to learn to socialise and get along with others. The problem is, most people think like this - "Kids socialising..hmm..sport, running around, making up games". Unfortunately your sons situation sounds like those things just aren't going to happen. My advice is something like art of some description, or frequent visits to a petting zoo (again, whatever you choose it needs to be something that you can do consistantly). Why those? Well it gives your son something to focus on and do on his own, but be doing it with other kids...so he will see other kids around doing what he is doing...however there is no pressure to interact with them until he is ready, and the fact they are both doing the same thing should spark his interest at least mildy. Basically it's socialising, without any need for direct interaction with the other kids, so hopefully it should ease into interaction with other kids and go from there.It could take time to see results but I believe they will come.

 

If you keep everything very visual based, and keep things as routine as possible, then it should make a huge improvement in not only his social ability, but also in his mental capacity and behaviour levels. I will take time, and effort...on both you and his teachers behalves...to get results from this. It will require meticulous planning to get right, and will be a lot of trial and error to see what works (My examples may not work in your particular case...try to improvise).

 

All this is based on my assumption he has autism, and while I'm not a doctor, it certainly sounds like it. I also have an autistic friend, as well as a family friend who has an autistic child, so I've witnessed it first hand, and their behaviour in relation so everything is identical to your sons.

[ComputerGuy]

I just did some quick research on the other two things doctorts have said...Pervasive Development Disorder is a category of developmental disorders....Autism falls under this category.

 

As for Developmental Dyspraxia...it doesnt really match up according to descriptions of what that is. Developmental Dyspraxia is a motor problem, which while it does share a lot symptoms with Autism, it also has the result of the child being slightly unco-ordinated. It's basically not being able to get the body to do what you want it to do. The fact he can do puzzles and play computer games well, suggests he doesn't have these problems.

 

I really think autism is the reason here.

[Minty80]

You both hit on why he doesn't have a firm diagnosis of autism. He couldn't care less about routines. A strict routine or no routine at all produces the same behaviours from him. The acting up outside the house more has to do with something I forgot to mention. He also has Sensory Intergration Disorder. So certain noises (they don't have to be loud, it's more dependent on pitch), fluorescent lights (like in a supermarket or mall), to many people touching him, and anything that will overload his sensory system gets him acting out a bit.

 

He also misses the autism diagnosis because he has never stimmed. It's something autistic kids do, usually when they are out of sorts, like hand flapping, making a noise, or some other movement. It's always repetitive and meant to self-soothe. He doesn't obsess either, which is yet another big sign of autism. He has things he gets into but it's always multiple things at a time and it's never to the point of obsessive.

 

He's also considered to social. While he has trouble with other kids it's solely due to his lack of speech. The kids often get weirded out (for lack of a better way to describe it) because D has so much trouble answering their questions, though he does make an attempt. He's pretty good, in general, at age appropriate play. As long as it's a game he can understand he fits right in. The problem is as the games become more complicated and the other kids explain them to him verbally he has more and more trouble joining. So something like tag or hide and seek he's right in there. When the kids make up some game like touch this, then do that, then run here, that's where he gets very lost.

 

He does have co-ordination issues. He does Occupational Therapy everyday in a group and individual twice a week. The videogames have helped with this which is why we let him play so much, but he still has trouble dressing himself, using scissors, drawing even semi-straight lines, riding a bike, that sort of thing. OT is the one area he has shown definite improvement in. He's still behind but only by a few months now, no longer years. So it tends to be the area of least concern for me. His delays there are mostly in small-motor movements, large motor he has basically caught up entirely. He does consistently test for low-normal muscle tone though, despite a very active lifestyle.

 

This is where so much of my frustration comes in. He fits bits and pieces of so many things but none of them paint a complete picture. During the school year he does ABA which is developed for autistic children and a very intensive learning program, but it doesn't seem to click for him. He also gets group speech therapy everyday and individual twice a week. Right now he's in a special camp for kids with mild to moderate special needs. It's basically like a normal camp but all the counselors and directors are special ed teachers. He also does group and individual speech and OT there so that he can keep up over the summer.

 

I have to run right now. My daughter is begging to go out and play. Thank you both very much for the replies, I don't want anyone thinking I'm dismissing the suggestions out of hand. It's just a road I've been down so much and I keep feeling like I'm hitting dead ends.