Wednesday, October 8, 2014

Not Easy to Like and Feeling Helpless...but Looking to Hope.

I know it's been awhile since I wrote a post.  And to my surprise I have had a few people ask if I had any updates about Lia.  Well...I do.

This last year has been one of the hardest for me in a while.  I'm not exactly sure why?

I think I've just felt overwhelmed with so many things going on that I finally just broke down and I'm still trying to recover.

However with all of life's curve balls and stresses that we all feel, still, our number one worry is our dear Lia.

While we struggle with therapy sessions with Jared once a week and the worry of him not catching up completely, his disposition is such that he's easy to like, he is happy and loving and overall a great little boy.

While this may sound harsh and cruel, Lia's disposition is such that she's much harder to like on a daily basis.  She whines and cries a lot, she fights and throws amazing tantrums and she can just be plain mean.  And that becomes draining after 5 years.  Leaving me feeling helpless and tired.

After working with psychologists, therapists, teachers and now a psychiatrist, we finally have an idea of what we are dealing with.  Lia was diagnosed with clinical anxiety, sensory motor disorder and she is gifted.  Thus creating a rather difficult combination for all in involved.  She shows signs of autism, but doesn't qualify for their help.  She struggles with school in many ways, yet she is so smart that there is no program to help her.

Once again, I feel helpless.  Helpless as her mother.  
As she has no idea how much we truly love her and want to fight for her.




We hear things like, "I won't follow your rules." "I don't need you." "I hate you." "I want a new family." "You don't care about me." on a daily basis from Lia.  There is so much lying and disregard to our family rules that we can't trust anything she says.

Her teacher is struggling with her as well.  We have had meetings and email constantly.

We have also found that Lia is allergic to red and yellow dyes in food.  Any and all kinds of yummy candy, chips, frosting and even vitamins push her over the edge.  I call it the Dr. Jekyll and Mr. Hyde reaction.  I know right away when she has come into contact with these dyes.

Overall, most days we just survive day to day.  We have tools and we have tried oils.  The only thing we haven't tried really, are meds.  While I'm in no way opposed to medication (I feel they can be very beneficial) it's still hard for me to accept that my almost 6 year old may need medication to function well throughout her life.

In the end, if you see that I'm more reserved, or I stay in my house a little more...just know that I'm tired.  I'm stressed and what we are dealing with isn't just a phase, like so many have lovingly tried to tell me.  Lia's little brain was given some real big challenges that she is working on dealing with. While we as her parents have been given the difficult opportunity to grow from all of this; we are making slow progress and feel that many days we are failing.  It has taken its toll on our family.

Lots of love,
A hopeful but tired mama

4 comments:

  1. Nikki , I think you are amazing and so is she . You are doing the right thing even if it's not plain to see . By small and simple means are great things brought to pass -- I hope one day you will be able to look back and see the rewards of your efforts that will surpas your pain . Until then , I love you and support you !

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  2. Hugs to you! My oldest has some similar challenges and we also have food allergies with my youngest. Hang in there, and thanks for sharing.

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  3. Nikki, I have been where you are (and am still there more frequently than I would like to be). I too was pretty opposed to medication. But my autism doctor asked me, "If Kaleb had diabetes, would you give him insulin?" Well, of course I would. That seemed like a silly question, but it made me understand a different perspective. Their little brains are lacking something that medicine can help make up. And I didn't do it for me - I did it for him. And what a difference it made! (And still makes, I can easily tell the days he didn't take his morning meds.) I completely understand your hesitation. But if Lia had some other bodily issue that required medication, you wouldn't hesitate to give it to her. In my opinion, this is no different. I don't want Kaleb to be on ADHD medication for the rest of his life; but the reality is that he has ADHD and will always have ADHD. It might really help her struggles. JMO, of course. :)

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  4. Maybe I have a more desperate nature, but I was ready to give my older son ADHD meds when he was in preschool. It took a little while to find the right brand, but I have never regretted starting him young at all. I love seeing him be able to reach his potential. My younger son has always been quiet and calm, and I never assumed he would need meds too. It took until he was in 2nd grade for me to recognize his problems. He started taking meds and he suddenly became good at school. When we were meeting with a doctor to review his 1st month's trial of the meds, the doctor asked if he's happy to take the medicine. My boy said, "Yes.... because now I'm not the last one done in class." ADD kids are not as easy to recognize as ADHD. I feel bad that I never saw his problems and that he had all those years thinking he was dumb and slow. I wish I had started him on meds earlier, but later is better than never. When my boys grow up, they can choose to stop taking the meds, but the childhood years are such an important foundation. Try using some medication now, just to see if it helps. If it doesn't, you'll feel peace that at least you tried. Also, there are so many different brands/types that have different effects on different people. If you do decide to try meds, you might take a few months finding the right kind and dosage. I don't know how autism would figure into finding the right one.

    No pressure-- I just never hesitate to share how meds have helped us so much. It may be awful to say, but I need my son to be medicated. I recognize some parents are able to live with an unmedicated ADHD child because the parents have a good personality to deal with it. I do not! Medicating my older son has helped me to like being with him. Meds don't solve everything, but they can really make a difference.

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