My other child

Looking at all the back posts I noticed I have not really mentioned my other child — my daughter, who is about five years younger than my son. I was hoping, hoping so hard, she would be typical. But she isn’t…

I should have known better. Yet, her challenges are different than those of my son. She does carry the same diagnosis as my son — PDD-NOS, but she “presents” (as the psychiatrists like to say) very differently. She’s far more social than he ever was, she has good memory for faces and names, and she recognizes social connections pretty fast (she learned pretty fast who is whose mommy or daddy at daycare). On the other hand, she stimms (she lays down flat on her belly and twitches), she has a tendency to line up things, she can get upset when plans are changed, and she gets upset when her clothes get wet or dirty and when her hands get wet or sticky.

She also has been diagnosed with apraxia of speech, a condition I was wholly unfamiliar with, because my son’s language, despite initial delay, was pretty well developed by the time he was three. My daughter talks very haltingly, cannot pronounce certain syllables, and has a hard time repeating words, especially words that are longer than two syllables. She tries, she tries very hard, but it just is not coming out right. Her pronunciation is very hard to understand.

Is she twice exceptional as my son? I don’t know yet. I seem to have been discounting her intelligence because her “output” is so poor, but the other day she was playing “point to a shape” game and I was floored that at three she knows what a hexagon is, and sees the difference between a square and a rectangle. She does seem to have pretty good visual memory, like my son. She’s very good at card memory games and seems to remember events that happened a long time ago. So she might be smart… Yet, I worry that just as I still sometimes do, others will also discount her intelligence because she.. well… she just doesn’t sound very smart.

Comments

  1. Donna Pennington says:

    Our 32 year old daughter is going through a divorce and has two children. Her son is 2 1/2 yrs., and her daughter is 15 mos old. Our grandson has been ” different” since birth. As we watched him growing and changing physically, it became exceedingly obvious he was delayed and had some unusual behaviors. His pediatrician alerted our daughter when Carson was around 17 mos that she suspected he was on the autism spectrum. We immediately began navigating the miriad of information while awaiting a referral for evaluation. Sadly, Carson’s father has refused to even consider this as a diagnosis. He has fought at every possible turn we’ve taken. After much research it was decided that the most services were possible in Lubbock, Tx. This required us to move roughly 180 miles from our small town in the Tx Panhandle. So, we found a home that would provide enough space for all of us and moved. Our daughter’s divorce was still not final. We have received a diagnoses of PDD-NOS as well as sensory issues and apraxia. Our big problem now is the court has refused to listen to the diagnosis and how that it certainly affects Carson when his schedule is changed. With dad refusing to acknowledge the ASD, he will not attempt to understand Carson’s daily needs. Recently we found out that dad has left him on several occasions alone in a motel room and had the hotel video proving it! The Judge refused to acknowledge and realize the danger this poses for Carson! While we are thankful no physical harm came to him, why is his emotional health not important? How, as caregivers of this beautiful little boy get people to understand what it means to have Autism??? Carson can not communicate his needs verbally. He is not able to Identify himself. He has no understanding of danger. The visitation ruled by the court has been minimal up to recently, but now is being increased to include overnight visitation for both children. Although this father has not ever been evaluated, he is a man that struggles socially and physically. Up until oving to Texas after marrying our daughter he had not ever been gainfully employed regularly. He is a twin that is equally unusual. We believe that the dad is very possibly on the Autism spectrum. His family are not one that would explore why these two boys have quirky behaviors and social awkwardness.

    I apologize for the length of my comment. I, as the “Nana” need to understand how to make positive progress in communicating what is at issue for Carson. Or, the children need an impartial party who is assigned the task of reviewing all the reports from the doctors, therapists, school teachers and family, to present to the court on behalf of the best interest of these children. Are you aware of any organization that does this type of intervention and mediation?

    We are absolutely sure that our move was the right one to provide the support for Carson. The baby will be evaluated by ECI this week. She is having some indications of delay. Our daughter is working two jobs in order to provide for these sweet children. My husband and I are retired and are helping with their living conditions and helping with care when they are not at school. It’s tough. But, the blessings and rewards of having them in our lives is great.

    We need help though. Massive Budget cuts to the programs for autism and developmentally delayed individuals is becoming a reality. Seems our legislative body fails to understand how terribly important these programs are. Isn’t it sad that the people that need assistance the most are the ones that the legislature finds are so easy to cut. Maybe that our Autistic children are unable to speak for themselves effectively makes it easy for these decision makers to forget the importance of them. It is a travesty!

    Thank you for listening. And God Bless you for your work on behalf of these children and adults.

    • Donna,

      I am sorry to hear about your troubles with the son-in-law. It is hard for some people to accept their child’s diagnosis. Luckily, Carson has his mom’s and your support.

      I don’t know much about what’s available in Texas, I’m afraid. Have you been in touch with anyone from the Partners Resource Network? (http://www.partnerstx.org/)

      If you’re in Lubbock, it looks like your area center is:
      PEN Project
      Parent Training and Information Center
      1001 Main Street, Suite 701
      Lubbock, TX 79401
      (806)-762-1434
      Toll Free (877)-762-1435
      Fax (806)-762-1628
      Email: wtxpen@sbcglobal.net

      Ask them about parent training and their Parent Leadership Institute, and take any free training courses or workshops they offer. The more you know, the easier it becomes navigating the world of disability.

      Also, they posted on their web site information on two support groups held in Lubbock (http://www.partnerstx.org/Support.htm). I hope you and your daughter will be able to join at least one of those groups.

      I found parent support groups a wonderful source of information (and support). And because it seems you have moved fairly recently, I am sure you could use some friends who understand what you’re going through.

      If your schedule doesn’t allow you to go to either meeting, consider joining the Partners Tx Yahoo Group (http://www.partnerstx.org/Networking.htm).

      I’m sorry I’m not able to help, but it’s best if you try to connect with people who live in your area — they will know much more about resources available in Lubbock.

      Good luck!

    • henry gutierrez jr. says:

      i am very sorry for your situation i myself and my wife also have a 5yr old son with autism and have come to find that any resources are scarce in this region. I have come to find out that amarillo or even dallas is the nearest that you can find a DAN doctor. we have been blessed with a chiropractor that is trying to a DAN license. his name is Dr. McAlpin. He has even gone as far as getting a hyperbaric oxygen chamber. I will give you his office number which is 806 722 4190 and i wish you the best and your family.

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