Wednesday, July 22, 2009

Two Steps forward, one step back.

I knew that today was coming for some time, after all I am the one that made the appointment for JM. He went to see a developmental ped today, first time in two years. We were going for a second opinion, looking for answers to things that well just make us scratch our head.

I knew going in what I was going to be told, but hearing it and knowing it is two completely different things. I have not had the chance to talk to many people about this, in fact just my husband and immediate family. So bear with me.

For some time we have had our doubts that John Michael only had sensory issues, he just seems to get so fixated on things, can not let things go, gets so upset and can not calm himself down. Discipline that works for the other two does not work for him, in fact it makes things worse. He cried the other day for two hours because I did not have twizzlers in the house. Yes two hours, nothing would get his mind off of it.

So I was thinking Aspergers, PDD-NOS, another words that he was on the spectrum. So while I knew this I did not know this. Today I was told this by two different doctors and a ABA therapist. SO I guess this means I have no choice but to accept it and to move on from here. To get him even more therapy and to make certain that I am there to fight for him every step of the way.

Our journey has changed today, changed a good deal. Our road down this life is going to be different, yet he is still the same child tonight that he was last night. I just hugged him tight, took him to dinner and got him ice cream.. Something special for my little man.

The next step, we are going to have the other two evaluated as well. I do not think they have aspergers, that they are simply sensory, but the doctor wants to test them and do genetic testing. The Marcus institute is one of the leading researching institutes for Autism and Aspergers, they are currently doing a study comparing siblings, seeing how they are triplets, they are a perfect fit for the study. This means that we will get some therapies for free.. (thank goodness..)

Thank you for your continued prayers and happy thoughts.

These next few days may be hard on me and well the rest of the family. Any advice or ideas will be greatly appreciated.


  1. Hello,
    I read your post and it mirrors my life with three teenagers that have autism. When my oldest daughter was diagnosed, I was in such denial that I even told the doctor that my daugter is just lazy and will grow out of it. My wife is the one who took control and get her into therapy early. I can tell that your a wonderful parent and getting your children checked is out of love and wanting to do the best things for your children. I would suggest that if you haven't already to surround yourself with family and friends who will truly support you. If you want some more information on resources email me at
    I am a job coach for adults with developmental disabilities and my wife is a parent resource advocate. I would like to help you if your interested.
    Bless you,

  2. Wow.. well, they are wonderful kids, and I'm sure that you will find ways through this. Many people with Aspergers grow to lead productive lives, as I know you already know. You just get a real handful!

  3. That is awesome that you will get the therapies for free. My middle son has High Functioning Autism. I wanted to get my daughter in a study as she came after him. But because she was born at 36 weeks and not 37 we couldn't do it. Totally sucks. If I can be of any help please let me know. If you need some to just listen I have good ears. I have been posting my journeys with my son and his autism and every now and then I share extra posts relating to autism.

  4. Be encouraged that an Aspergers diagnosis, while difficult is not a terrible thing. I'm a teacher and have worked with a lot of children with Aspergers in my career. I've seen some incredibly gifted children in this group. One great resource online is It is Liane Holliday Willey's site. Another teacher who specializes in Special Needs Resources directed me to her and she's wonderful. I think you may find her work encouraging.


Thank you so much for taking the time to comment on my post. Please feel free to ask questions, add advise or just make observations. I appreciate all comments.

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