Monday, January 26, 2009

Need for More than Just Sensory Needs

This week Sarah is scheduled to be assessed to see whether or not she will qualify for services after she turns three years old. Her birthday is in March. This past year, we have had services from a 0 - 3 state/government agency that has helped us in many ways.

Although Sarah struggles with sensory issues, I think I am struggling with my role of parenting more. I struggle with knowing if her tantrums are typical. I need to know if her social inappropriate ways like licking cold windows to cope with transitions, biting to rip through blankets when frustrated, needing gum or candy all day long, not eating with utensils and only eating mushy baby like foods, tearing, short attention span, biting ice until her tongue bleeds to drown out noises, hiding and escaping when surrounded by a noisy environment, etc., are all normal like behaviors.

She can talk. Well, she can most of the time, except for that busy day at one of our last play dates when she stopped talking for the rest of the day, or when her older sister, who has Aspergers, is around. Her big sis is a challenge to be around even for me and I am an adult! There is a lot of stress and unpredictability when big sis is around so Sarah tends to hide away, not have her confidence.

She is smart. She knows her letters and colors, expect when asked, then she won't respond. Or, maybe I just can't get her attention long enough to answer my question when I ask her: What color is this crayon?

She's cuddly. She loves to snuggle and be held. This is such a blessing to me since her big sis has tactile defensiveness and won't allow me to touch her, hug her, kiss her, brush her hair - unless it is on big sis' terms.

She is social. She likes "her freenz," she talks about them when they aren't around. She'll make a drawing and say: Deez is fer Aleezabit my fweend.

I think she will do just fine in school and life if she doesn't qualify for services. But, I want what is best for her. If she needs special services, I want her to be eligible. And, if she doesn't NEED the special services, then, I want to be at peace about that too. The problem I am faced with though is that this week's testing may not gather all of the deficits along with the strengths that my little one has. Suffice to say, a one hour meeting with a psychologist, OT and a parent taking a test doesn't measure Sarah holistically. And, I feel like if she were eligible for services, than, it would validate my concerns as a mother. My extended family and friends would then believe me and not just brush my ill-parenting under the rug as ill-parenting. Getting services would help me get some support I desperately need to better meet Sarah's needs!

Prayer for today:
God, I call out to you on this! You have placed Sarah in my hands as a gift from you. You have asked me to care for her and I want to do the best I can. I feel like a failure most of the time at this mom stuff. I feel like I don't have the mental and emotional strength to make the best decisions for Sarah, or her big sis. I get downtrodden, feel helpless and hopeless. I need you to guide me, I need you to help me and my daughters with patience. Help me to help them grow into the women you want them to be. Take the wheel for me today God. My family tree's roots are not strong, please nourish me anyhow!


Maddy said...

I'll a prayer to that one for you.
Best wishes

Elizabeth Channel said...

You are so in touch with Sarah and her needs, and your prayer is so moving to me that I think I'll stick my own children's names in there, too.

I think it is so difficult when dealing with an unusually gifted child to decide when services are needed. I have seen evaluators brush troubling behaviors under the rug because they are just part of "giftedness," when, in actuality, those behaviors are part of a larger issue. The intellectual capacity can mask other symptoms, I have found. One of my children has been assessed beginning at age 15 months and virtually every year after that but only found to have a "diagnosis" at 6.5 years. That is frustrating. Stick to your guns; if you see sensory processing issues, keep seeking OT now. I wish I would have known about SPD years ago and been able to start treatment then instead of waiting for years and years for "uneven development" to catch up.

My soapbox for the day!