so here we are...ASD mommys
Rdmaggie
member
I posted back in November about my suspicions of LO being on the spectrum. At the time (closing in on two) she said just a handful of words, could label things but not answer any "where questions". She had an almost non exsistent attention span, woke numerous times throughout the night, screamed through bathes, babbled constantly, made odd movements with her arms and shuddered quite a bit. No interest in other children or adults (not the case at 1 year). However she could count to 25, read numbers, letters and knew shapes/colors.
We started EI at about that time and the test results were pretty poor. Her cognition level was tested to be at about a 10 month level. Given that she still only qualified for 30 mins a week with an interventionist.
I was shocked when we saw a developmental pedi at childrens in january and the Dr. spent an hour with her and assured us she did not have autisim. She also stated that she did not believe the test scores or that DD was even really delayed. We were reschedulded to come back to do a developmental screening at 2.5 to "get rid of the delay diagnosis" as she told us "shes going to be just fine." Fast forward to the begining of May and we walk out of the screening with a "language development disorder" and apparently without our knowledge and only finding out when looking at the diagnosis sheet "Encepholopathy, unspecified." and an order to return in a July for the ADOS.
Quite a different outlook, no? I never doubted she was on the spectrum, but it makes me so heartsick that my husband really believed she wasn't after that. Also, that I had to battle internally throughout that time with wondering if I was really losing my mind. I know testing is more accurate with age, but how irresponsible of her to insist that DD was A-OKAY. On a foot note she has made excellent progress, but she is absolutely night and day different from her peers. Her language is 99% echolalia and scripting, although it is used appropriately for the most part. Since she can speak actual words now her verbal stimming seems less noticable to others because she sings actual songs rather than jibberish, and since we went GF or perhaps since shes matured her tantrums have majorly shortned. Her cognition is at peer level...and above in some ways. No one in our lives gets what we are going through, not our parents, friends...no one. People look at DD and either think shes rude because she just stares when they speak to her, or dismiss her completely because they assume she doesn't understand them because she does such odd things they don't realize how high her cognition level is. I quit my job to stay home and work with her fulltime, and my husband is taking a 25,000 (yes...that big) salary cut to be home with us more and help too. We are doing all we can, and sometimes I just want to throw up when I stop and think that we are going through all of this just to teach her to do things other children NATURALLY do. She is worth every second and I am thankful we are able to do this for her, but sometimes my heart just hurts.
Would love to hear from other mommys out there, I remember talking to several of you in the past...
Re: so here we are...ASD mommys
(((Hugs))) my DS was diagnosed with PDD-NOS at 21 months in February. I agree no one in my life understands what it's like. My FIL didnt believe me when i said something was wrong with him until we got the diagnosis. it is so hard knowing how much he is going to struggle and how hard it is for him to learn the simplest of things.
But someone who's child is also on the spectrum recently told me something that reminds me how blessed I am to have such an amazing and special little boy. She said one of the benefits to having a kid with special needs is that we get to celebrate every little thing. Every word learned, every sign, every milestone reached because we know how truly amazing it is that our child was able to accomplish it!
Hang in there!