new here & introduction

Discussion in 'General Parenting' started by free2ride, Jun 17, 2011.

  1. free2ride

    free2ride New Member


    I'm the paternal custodial grandmother of a granddaughter who is 4.7 years old and has been diagnosed with a cleft lip and palate, sleep disorder, sensory processing disorder, oppositional defiant disorder, disruptive behavior disorder and insecure attachment disorder.

    Her parents were both substance and alcohol abusers. We have had her since she was 4 months old when she had her first out of six surgeries.

    We have issues with sleep, aggression, defiant behavior and of course sensory issues. Her pediatrician says she is a "complicated child". And I agree with that.

    She had 6 months of Occupational Therapist (OT) which helped her a lot and was stopped for now until she restarts preschool in the fall. She's on 1 mg of Intunive ER which has helped with her fear in social situations immensely. We also have ST (speech) as well which is related to her cleft in the area of articulation.

    We have two grown children and have two other grandchildren. I used to volunteer in the school system, was an emergency foster parent, had a home daycare and volunteered at the local hospital in the pediatric unit. I also have nine nieces & nephews, 19 great nieces & nephews and one great-great nephew. You would think that having been around all those children I would be an old pro but I find this child is different than any other child I have known.

    T attended a half day preschool for the past two years and the problems there were minimal. This upcoming year she will attend a full day program however we will start with two 1/2 days & 1 full day then gradually increase the days until she is going 5 full days. This was the recommendation of her Occupational Therapist (OT) who was concerned that otherwise we might overwhelm her sensory needs. She has agreed to come to the IEP meeting to help facilitate sensory modifications are in place and visit the school frequently.

    I see a lot of her behaviors that was also exhibited in my son and it worries me what her teen years of rebellion will lead her into. Most days I feel overwhelmed and have no respite care at all other than sometimes on the weekend when my husband will take her for a few hours. I find at those times that I'm really too tired to do anything for myself. In some ways I look forward to her starting school back. My husband and I have absolutely no time alone with each other anymore either which bothers me. We will celebrate 15 years of marriage in September.

    On the other side of the coin she is a gorgeous little girl. Her surgeries have corrected her cleft lip beautifully and we love having her in our lives. She can be an angel and her hugs & kisses make the sun shine brighter in my day. We have never regretted taking her in to our home and loving her and after having her for so many years and going through so much with her surgeries she seems like "our" child completely.

    That was a long introduction but I appreciate you reading it all (if you did! LOL!).

  2. nvts

    nvts Active Member

    Hi Jennifer! Welcome to the crowd - it's a great group of people with tons of experience and very broad shoulders to lean on!

    It really sounds like you're "up" on everything that needs to be done as far as developmental stuff goes...Occupational Therapist (OT) for sensory stuff is awesome - have you considered a "brushing" regimin? I'd ask the Occupational Therapist (OT) about it - quite often, it allows both of you some bonding time and helps with the sensory "stuff".

    Have you had a neuropsychologist done? ODD for a child this small can frequently be a "catch all" diagnosis. You could have this done and find a more definitive diagnosis that would allow for respite care and more help in your life. I do understand the exhaustion that accompanies our kids and it stinks that the coverage time that your husband provides results in a collapse into a piece of furniture from burn-out! :mornincoffee:

    I've got to run...but again, welcome...and feel better!

  3. keista

    keista New Member


    Reality is, you ARE a pro. All that past experience will help you on this brand new experience. There is a reason you've been given the responsibility for this very special girl, at this point in your life. You know the ins and outs of all types of children, and all the systems involved with children. She is truly blessed to have you raise her.
    You are on top of things, and most importantly, you found this forum! It might be a bumpy ride, but getting started identifying ALL her issues at such a young age, is a great start, and therefore her future is more promising. And members of this forum will be here to support you through it, so stick around. This is a great place for support, insights, and guidance.
  4. april1974

    april1974 New Member

    Welcome...I think it's amazing you took on the full time care of your grandchild, not many would do that. Is there any agency that can help you, set up respite care? Is she a ward of the childrens aide society? If so usually they are so thankful for family taking on a child they would offer respite. It must be hard not having any time to yourself. I understand why you are happy school is starting. Sounds like you have alot of experience with kids and your grandaughter is lucky to have you.
  5. SRL

    SRL Active Member


    Are all of her speech issues simple articulation issues, or is there anything there that points to speech/language processing problems? The reason I'm asking is that if you'd pulled out the cleft palate and substance abusing parents I would have been wondering about Autistic Spectrum Disorders when I read your post. If there are signs we usually suggest that parents/guardians research these thoroughly because if they jump over this diagnosis at young ages it can be a real rabbit chase to find it down the road, especially if they have been medicating for other conditions and/or if the child was atypical and didn't fully meet the criteria. We've also had children come through here who had other unrelated medical/health issues which complicated diagnosis since the symptoms were attributed to (for instance) Johnny having spent so much time as an infant/toddler/preschooler in the hospital being treated for ____ and not having a typical early childhood.

    Beyond social issues, speech, Occupational Therapist (OT) and possibly difficult behaviors, signs you would be looking for around this age might possibly include lining up toys or other household objects, obsessive and/or repetitive behaviors, unusual interests for the age, difficulty in making transitions, and possible problems with eye contact. Unless one is familiar with Autistic Spectrum Disorders, it's often overlooked since people often think classic, severe Autism instead of a little person who is functioning in the world, but with difficulties.

    I'm just a mom and obviously can't diagnose your kiddo, but I wanted to make sure you're aware of this possiblity and have checked it out thoroughly.