Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

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with 13 comments

Last week we returned to the hospital for the results and recommendations following Pudding’s reevaluation.  As you may recall, I was worried leading up to the appointments, but managed to reevaluate my own perspective for the actual testing.  Spectrummy Daddy was going to stay at home with the kids, but at the last minute decided we were all going.  I think he thought I as perhaps less calm than I appeared, but I reassured him.  She already has been diagnosed with an ASD, a lifelong condition, nothing is going to change that.

Actually, we do know that some individuals who meet the criteria for an autism spectrum disorder in early childhood no longer do so in subsequent evaluations.  It seems like early intervention can be incredibly effective for some children.  Other children receiving the same services, however, do not make the same improvements, and we don’t know why that is.  We know that therapy is essential for all children, but we can never tell how much progress will be made.

Pudding is in an intensive ABA/VB based preschool autism class.  She also receives private speech and occupational therapies, and we work on developing her skills at home.  We’ve seen her make progress in many respects since her diagnosis.  And yet, we’ve seen new difficulties emerge at the same time.  I knew we weren’t going to be one of the families to be told that their child no longer has autism.  At the same time, I’ve come to terms with Pudding’s differences, indeed, they are part of what makes her so special.  My job is to ensure that she has the best program for her that we can provide, which begins with accepting the diagnosis, and adopting the advice that we had come to hear.  We do the best we can with what we have.  So now let’s see what we have.

The psychologist began by confirming what we suspected: she does indeed still meet the criteria for ASD, and Asperger’s Syndrome is still the best fit for her (until the DSM-V gets rid of that diagnosis).  Her overall language scores were higher than average (pragmatic language of course being the exception).  The rest of her learning profile was very erratic, and in some instances, she performed comparatively worse than she had in 2009.  However, at the same time, she did better at the tests measuring ASD.  She is still an aspie, but less so than she used to be.  Right.

There was more.

She now meets the criteria for ADHD, and the doctor feels that her problems in this area go above and beyond the attention problems associated with Aspergers.  It is possible to have Asperger Syndrome and not have ADHD, but that is not the case for Pudding.  Okay.

There was more.

She also acquired a diagnosis for Developmental Coordination Disorder (also known as dyspraxia).  Her fine and gross motor delays going beyond what would be expected with an ASD.  Well, if you’re sure.

There was more.

One last diagnosis of a Sleep Disorder.  We’re done, right?  Right.

Well, she has to be monitored for non-verbal learning disorder, as she is skating close to the edge of picking up that diagnosis too as she gets older.  I’m only surprised we didn’t gain an anxiety diagnosis there too while they were handing them out so freely!  Buy one, get three free.  The deal of the day, if shopping for diagnoses.

The doctor strongly felt that each of these issues are profoundly affecting her ability to learn and benefit from the therapies and services she receives.  So we need to look at each diagnosis separately to see how it impacts her and what the best overall treatment will be.  We have a lot of recommendations for her program, so now my job is to put the program together for South Africa.  That is the very definition of easier said than done!

She left us with the wise words that just like the first time we met, and Pudding was still our girl- not the diagnosis- so she remains today.  Even if we’ve added a few more diagnoses to the mix.

That is my girl: always a little more than we’d bargained for.

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Written by Spectrummy Mummy

May 12, 2011 at 7:18 am

13 Responses

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  1. Wow, that is alot to take in all at once. My heart goes out to you for your struggle and for Puddings but at the same time I rejoice with you that even though the diagnosis have increased, so has her progress!!! She is a wonderful, beautiful little girl and I can see that just from your writings of her – it must be exaggerated 100% if you know her!! While the testing and diagnosing may seem endless, you can be thankful that she is not touched more severly by Autism and know that she is going to soar!!

    joeysmommy

    May 12, 2011 at 7:40 am

  2. Aaw, thank you. 🙂

    Yes, it is incredibly encouraging to see the progress she has made. Things could be much worse, and now we have a clearer idea of what we need to do next.

    Spectrummy Mummy

    May 12, 2011 at 7:55 am

  3. I feel so deeply for you. My little one also has several diagnoses…and he’s only 3. It certainly makes like interesting, doesn’t it? (rhetorical). I am confident that you will get a fabulous program together for her in light of the new information that you have about her strengths and relative weaknesses. Deep breaths.

    Aimee Velazquez

    May 12, 2011 at 9:39 am

    • Oh, three is so little for all these diagnoses too. On the bright side, we are aware of our kids needs so early, and that is invaluable.

      Spectrummy Mummy

      May 12, 2011 at 3:47 pm

  4. All the diagnoses can be overwhelming….buuuut they do help establish services and needs which is vitally important with your move coming up. Still stinks to see it in print–nothing really prepares you for that. Hugs.

    Lizbeth

    May 12, 2011 at 10:31 am

  5. My younger ASD son (16) also has multiple diagnoses.. (Asperger’s, ADHD, anxiety, OCD, mood disorder, etc.) and in my mind is what characterizes the statement that “no two children with autism are alike.” I totally agree with you about favorable progression in some areas while new challenges emerge as they grow. I just told a mom that very thing the other night when she begged me to give her some hope that things will get better. For us as parents, I think the acceptance of our children as they progress through childhood, adolescence and young adulthood is just as much a journey for us as it is for our special children.

    Karen

    May 12, 2011 at 11:40 am

  6. Wow, that’s not easy to take in all at once. I can’t imagine how hard it is, putting together a program when you are moving to a new country. Yet somehow I suspect you will handle it much better than I ever could. Thoughts are with you!

    Flannery

    May 12, 2011 at 12:27 pm

    • Ha! I think you might just see that that may not prove to be the case. We’ll need all the luck we can get!

      Spectrummy Mummy

      May 12, 2011 at 3:44 pm

  7. oh my, your post makes me feel very emotional. my eight year old son was diagnosed at three with very similar findings. you are right that early intervention helps so much! you and your husband are doing so much for your daughter, she will progress in leaps and bounds with your support, and the therapies, there is so much hope. everything grows with love, especially children, and it seems she is getting lots of love! i wish you all the best in this journey overseas with your kids.

    selina

    May 13, 2011 at 12:24 am

  8. […] that month on her blog I discussed how my two saplings are growing together.  Pudding racked up another three diagnoses.   Over at About.com I talked about being an Autism Mother.  I found that I was […]


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