Hannah’s disappointing DAYC review, 18 months

I had been dreading this day for two weeks.  I have to admit, this is the first time I had been dreading Early Intervention’s quarterly or so assessment of Hannah’s life skills.   Her last one was at 15-1/2 months and today she was counted at 18 months even though she will be 19 months in a few days.

  • Cognitive Age Equivalent – 11 months
    (at 15-month assessment, she was assessed at 11-month level)
  • Communication Age Equivalent – 8 months
    (at 15-month assessment, she was assessed at 8-month level)
  • Social-Emotional Age Equivalent – 14 months
    (at 15-month assessment, she was assessed at 14-month level)
  • Physical Age Equivalent – 11 months
    (at 15-month assessment, she was assessed at 8-month level)
  • Adaptive Behavior Age Equivalent – 14 months
    (at 15-month assessment, she was assessed at 14-month level)
  • No, there are no accidental duplications or typos.  With the exception of her physical age assessment, she has not gained any new scorable skills in the past 3 months.  As a matter of fact, her communication and social-emotional skills have not changed since her 12-month review.

    Hannah’s skills are very scattered.   Therefore, this review is not a very pinpoint accurate assessment of Hannah, but as I was reminded by both Hannah’s hydrotherapist and her developmental therapist, this is just a tool.

    Communication is probably the area I wish we could progress on most.  She still babbles on occasion and uses her “ga” sound without any real intent or purpose.  But she does not point to objects, hand us something she wants to use, wave ‘hi’ or ‘bye’, or really anything.  She does not respond to most things we say to her as if she comprehends them.  Even if we call out her name, she does not react most of the time.

    We are going to start being more diligent with the sign language, but she does not look at us much of the time we talk to her unless we actually go in front of her face.  It isn’t like she looks at us with a “what are you saying?” face, but she just goes on about her day as if we are speaking babble to her.  We know her hearing is fine, as she passed her ABR and hearing tests recently.

    Thank goodness we get smiles and tantrums because at least we know how she is feeling.

    It really is almost like she is frozen in that 8- to 10-month old mindset without any real progress lately with the exception of her physical development.  At least we are seeing good progress in that area.

    I just have to keep reminding myself that she is happy.  She is not in pain, and she just wants love, hugs, laughs, and toys.

    I just want so much more for her that I can’t seem to give her.  I want to see more progression in her learning, even if it is at a slow pace!

    The fact that her learning is so damaged at this point really scares me.  I just don’t know what to make of it.  I have heard stories of other kids with this disease, but Hannah just seems so different than most of them in this respect when combined with her other disease symptoms.   I feel like we are in unchartered territory (which we are anyway with her and nGD).

    I know I should not put so much emphasis on this review.  But I can’t help it.  Clearly, Hannah’s learning of new skills is getting much slower and almost at a standstill in some respects.  What does that mean for her future?


    1. **HUG**

      At least Hannah is still the cutest baby gal ever! 🙂

      But, I SOOOO get where you are coming from. I am dreading Bertrand’s review on March 16th. They are starting to get us ready for IEP planning and exiting EI, and moving on to Preschool. But, B hasn’t budged from 6-8 months developmentally. At 26 months old I think he may be *losing* skills due to his broken arm. I love him no matter what, but I wish he could be happier. I wish he could learn all that I feel he wants to learn! And Hannah too.
      .-= Cristina´s last blog ..Discovering the Unseen Risks of Genetic Diseases =-.

    2. Those things are always depressing. After a few years you get sort of adjust and realize it is what it is. There is only so much you can do to change it and you are doing it all. But its still heart breaking every time. I wonder if she would be a good candidate for an augmentative communication device. If she likes the v-tech stuff she might do really well with a dyno-mite. Its worth asking your speech gal about! Hang in there!

    3. You already have your anwswer, I think. She is happy, cuddles, giggles and plays. Her progression will be unique to Hannah and have little to do with these EI assessments. I totally understand wanting the best for your children and Hannah has two great parents fighting for her every step of the way. It is the best you can do.
      .-= Melissan´s last blog ..Private Disability Insurance and Social Security Disability Benefits =-.

    4. Raelynne Lorenz says:

      Carrie-I know how disappointing all of that can be. I really get upset when this situation occurs, but Jen may have a point. Since her motor skills did show improvement, it may be wise to investigate an augmentative communication system that plays upon her strength. Now, I don’t know Hannah and I’ve never met her, but it would be worth looking into now or sometime in the near future. She really needs that “pointing” skill though to give her more options….I’m thinking hmmmm

    5. Carrie, so sorry for the disappointment. I don’t see her at home or really even know her at all. But from what I have seen & heard from you here on Face Book, I can only make my own assumption. All I know is that YOU are a much caring Mother and have the strongest will to fight for her daughter, than I have ever seen in anyone. I also know that Hannah is adorable and lucky to have been born into the family she has. I can’t even imagine what your heart has been through or is going to go through. I just know that lady, you have a strong one. I wish all the best for Hannah and hopefully in a few months she will grow in every area. Good luck to you and your family.

    6. I am sorry to hear that…but I almost feel like you are over analyzing it. You cannot necessarily hold her to “normal ideal”. I feel almost like she will get there it just won’t be at the speed you or your testers want. You also have to consider doing anything physically or mentally will require a lot of energy…and she will have to expend a lot to do it, so it is unlikely that any of it is will come fast. Albert Einstein didn’t speak until he was 3 and he won the Nobel prize for physics! What is important to note is she has not lost skills. As far as hearing I am told i have perfect hearing; however, if you don’t talk in front of me I usually can’t hear you. This is because when you have an abnormal BAER…it is difficult to hear things from behind you or from the side of you. So attempt to do it in front of her. Perhaps do the activities you would do with and infant, make faces see if she imitates them.

    7. also she looks like she can play so this is a serious positive…when babies don’t even seem interested in objects this is a bad sighn. But she looks like she is having fun with her guitar.

    8. The thing is, we all dislike these days. We dread them, fear them, get oh so much anxiety about them, during them and after. We wish we could say that this information isn’t really *that* important…that it’s not really *that* accurate. But some of it does, some of it doesn’t…it does give us a gauge, a place to start, to evaluate…but she is not a number. She is not as any other child. She will improve, maybe it will take time, but she will improve.
      .-= MiaHysteria´s last blog ..Say What?!? Some Things Can Wait ~ 2/19/10 =-.

    9. Missy says:

      Hannah is always in my prayers. I know that I do not know you and that I have commented on this before but my child was very delayed in speech and the tool that helped us was the Baby Babble DVD ( in conjunction with speech therapy, of course ) I noticed a huge improvement in the sounds that my child made right away. The DVD was developed by two speech pathologists and is just really interesting to kids and helps them imitate sounds. I am not trying to be pushy, I just remember how hard it used to hit me when I would hear that my child was a year behind with talking and how excited I was when she started to make sounds along with the tape. I believe you can get it on Amazon. I am praying for your little angel always. I know something else that helped me was simply remembering that all of our little angels learn things at their own pace!

    10. Sange says:

      You have my sympathies. It must be very frustrating for you. Every parent wants the best for their baby and also to see them progress. You are a great mother and doing the best you can for her with her therapy, doctor visits and lots of love. My 8-yr son, who has epilepsy and possibly a mitochondral disorder also, has hit shown a great slowing (and possibly a stopping) in his learning too so my heart extends to yours. I will pray for you!

    11. Oh my… I am happy to hear she’s advancing physically. I thought I could see the growth. I can only imagine how this hurts your heart in regards to the other areas that don’t show any definitive improvement or advancement. I’m hoping you can find comfort in the difference in Hannah’s uniqueness and individuality, and that it’s possible with the continued therapy and family support she will overcome these hurdles.

      HUGS, Smooches & Love!
      .-= Petula´s last blog ..Mini moments =-.