multiple dx's, a rant, a cry and a celebration of my son

Post Reply New Topic

Sorry in advance if this is a long post and if I waffle, I'm experiencing mixed emotions.

I took my 10 year old son to the Childrens hospital mental health clinic a couple of months ago, for extreme anxiety and some extra ocd tendancies that were starting to emerge- mostly it was to get help with his anxiety. Yesterday I got the results of the countless forms that I have had to fill out, his school has had to fill out forms and there have been a few written and verbal reports from his OT and the school psyhcologist(she is fantastic).

From the start of this whole process until now my son has been put on anxiety medication (Lovan) some of his behaviours have changed, the ocd stuff has lessend, the anxiety and panic has dropped (YAY) generally he has become more of the little boy that I remember prior to school. Kind of loud, in your face, impulsive, more highs than lows now (yay) much less on edge than before =there for much more laid back= slower to respond, more distracted by external stuff, the list goes on. Anyway during this whole process I naturally asked questions about some of the "odd" behaviours that J was exhibiting and had always exhibited but I had just asumed were part of his AS dx. Turns out I was right to ask. J has now not 1 dx (the aspergers dx) but 5. He has now been clinically dx'd with aspergers syndrome, adhd, ocd, anxiety and tourettes syndrome. As the doc said he is complicated. As much as I suspected and to an extent anticipated an extra co morbid, it still kind of hit hard to hear it coming from a professional. Even I think had she not done all the research, ie consults with all the other professionals that I know she consulted with I think I still would have doubts, which is silly because I myself had my suspissions ( does that make sense) sorry I cant spell.
It all makes sense now. The aspergers always made sense to me, it fit. He was originally dx'd with adhd, that did but didnt make sense, it explained some but not all- not enough to convince me that this is/ was what was going on with my child. So when the original adhd was replaced with aspergers I was releaved (this one explained my son) I could tick all of the aspergers box's. That is until I met others with an As dx, he fit with those kids better than with NT kids but there was still something just that bit off ( if you know what I mean) I really am waffling now, oops sorry.
I just needed to get it off my chest, part of me is releaved J has finally been recognised for his strengths and his difficulties. He is one hell of a kid to be where he is now ( and not a basket case) is a celebration I think of what an extrordinary child he is. I know that multiple dx's for our kids is "normal" but the confrontation of it all when your suspisions as a parent are confirmed send (well mine anyway) your mind realing.
I have had this child looked at for so many medical conditions that can now be explained by these new dx's egs, he has been seen by the asthma/thoracic clinic for throat clearing and coughing(tourettes) he has been seen by a neurologist for epilepsy, eye rolling etc (tourettes) the list goes on.
My biggest problem/concern at this stage is that two professional have said that they cant work directly with him because he at this stage doesnt have enough of the capacity to explain his feelings and frustrations with them, therefore no CBT. I'm hoping this can change, I will do the work with him I just need to get someone to help me help him. And J like a lot of aspies I know lol will only do things on his terms and in his way.
Im sure alot of parents have been threw the same feelings I am experiencing, there is a light at the end of the tunnel (lol there has to be ) I guess knowledge is power, now I know for sure what we are dealing with it a matter of getting everyone working with J on the same page. Then keeping tabs on the progress. I still cant help but be furious with his last school, that kept insisting "he is fine, we've had aspies before and he's not like them, we've had kids with adhd before and he's not like them" Hmm NO he is J, he is a combination and he needed help- perhaps had they helped when I first started screaming at them he might not have needed anxiety meds. Please any prpfessionals out there, don't assume you know it all because you don't! Listen to the parents, they know their kids.

*Applauds*

Excellent! Truly good to know aurea!

It's good to see parents that fully embrace their child's gift and not treat it as a curse!

I've heard good things about some fish oil tablets called...Eye Q I think? I'm due to go on a course of it myself.

As to the professionals saying they can't work with him...I think it's less because of that fact and more that they can't pick up on aspie traits. That and they are different so an aspie will feel less inclined to open up around them.

Good luck and I hope the same fortune you've had thus far continues!

Regards
GM

I am so glad to hear that you have some answers Aurea. One of my sons has recently added OCD to his list of dx's too...so that makes OCD, Aspergers, ADHD, GAD and "possibe dysthymia" for him. Quite a lot for one small kid to carry around with him isn't it?

I can sympathize with your "mixed emotions", but I am really glad that you are celebrating J. He sounds like an incredible kid!

Thank you gifted monster and alice for the support , every little bit helps.

Someone asked me just recently, "What do you say now when asked what his dx is or when filling out forms, what exactly do you write?" So I'm asking the parents here with kids in the mix, Do you say each and every dx your child has? (they never make the space big enough lol)

I usually say my son has developmental delays.

It depends on what the forms are for. If they need all pertinent info (medical, school) I include everything. I have been known to attach an extra sheet...or two..or three when I don't feel there's enough room to give them all the information required. I am sure the new teachers just love getting my "book" at the beginning of the school year.
If they just need a general picture (i.e. instructor for hour long class), I just say Aspergers. I do view AS as my sons primary diagnosis.

I have wondered at times whether all the anxiety, inattention etc. is part of the AS rather than requiring separate dxs, but the psychologist who made the original dxs and current psychiatrist seem to think that they are significant above and beyond AS to merit the separate dxs.