Saturday, December 3, 2011

SNSS: Amazing Sister to Grace

My guest today, Frelle of the blog Made More Beautiful is a very, very special person. She has just come through a very hard time, including a separation from her husband and impending divorce.  

But in spite of the difficulties on this path through her life, Frelle is always reaching out to help others. She is a part of many online communities. 

I first "met" Frelle through some lovely supportive comments she left on my posts. I followed her home to her blog and discovered that not only was she a good online friend, she was also a wonderful writer, honest and deep.

Frelle is the mother of four children, the oldest of whom is a daughter with challenges that fall on the autism spectrum. Today she shares the story of the strong relationship between her eldest daughter and her just younger sister, who is like an older sister now.

Read her beautiful words, here:


Amazing Sister to Grace - by Frelle

My oldest daughter, Grace, is almost 12.  She was diagnosed with Aspergers about 3 years ago. She has three younger, neurotypical siblings.  Two sisters, Lily (9) and Felicity (6), and one brother, Jackson (4). I keep them anonymous on my blog as Oldest Sister, Middle Sister, Smallish Girl, and Little Fella.

The journey toward diagnosing Grace didn't start until she was about 5. I had no idea that Grace wasn't developing typically until Lily came along three years later and had excellent hand eye coordination and motor planning skills that her older sister had a lot of trouble with.

Because of the 3 year age difference, I decided to have Grace evaluated, and she scored a 36 month delay in both gross and fine motor skills, and was diagnosed with Sensory Processing Disorder, Sensory Modulation Dysfunction, Auditory Processing Disorder, and Dyspraxia.

At age 6, she possessed the emotional maturity of a preschooler, and would often get overstimulated in public and have meltdowns.  The laying-in-the-aisle screaming and crying variety. Her siblings never made scenes like she did, and more than once I heard the words "brat" "can't control her child" and "isn't she a little old to be throwing a toddler fit?" By age 8 she had mostly grown out of public meltdowns, but Lily began to be embarrassed at the loud wailing and yelling her sister would do in the car or in front of Lily's friends.

I told Grace about her diagnosis at age 9. She had been having an incredibly rough day, and had been hitting the door in the van and crying and screaming all the way home.  She went to her room to calm down, and when we spoke later, she asked why she was so different from other people. So I told her I thought she inherited her blue eyes from her grandma, her freckles from me, and the way her brain works from her dad. A variation of normal.

Lily is the sibling closest to Grace in age in our family. I told Lily about her sister's diagnosis when she was in second grade.  Grace was still having meltdowns often, but I never sent her to her room to get control of herself.  I knew she needed to be talked through the panic attack/meltdown.  On the other hand, when Lily was being loud and obnoxious and having a tantrum, I would send her to her room and expect her to pull herself together and come out when she could be nice to people.

She thought this was really unfair, and confronted me about it one day after Grace had caused a particularly disastrous meltdown scene during her birthday party. I explained in very general terms that Grace can't talk herself down out of a fit very well, and that she could easily pull her own self together. I explained that Grace's food and clothing and loud noise sensitivities were all tied together, and that her brain thinks a different way than hers and mine do.

Lily passed her sister in emotional maturity last year. I wasn't sure how Grace and Lily's relationship would change when Lily did this. I'm not sure either of them realize it happened, and there's no resentment from either of them toward the other.

Lily continues to relate to the world in a much more mature way than Grace.  She has taken on the role of the oldest probably because she sees that it needs to happen, as well as it just being because of her particular personality.

Lily, at 9, is a very typical tween. She's very into popular music and tv shows, she loves to go shopping and is very into fashion, she enjoys going out for coffee with me, and helps her siblings with shoes, clothes, bathtime, getting snacks or sippy cups, and is attuned to needing to jump in and help when both of my hands are busy or I haven't noticed an issue in another room.

In contrast, Grace has few tween characteristics, preferring to draw, read, play webkinz online or Barbies with her youngest sister, Felicity. Outside the house, Grace behaves much like a typical tween, and does well at blending in with other students.

She is protective of her diagnosis, but when she makes a new friend and learns she can trust them, or that they have a sibling with special needs, especially autism, she confides what makes her unique. She's never had it used against her, and she has a circle of close knit, very protective and mothering friends that she counts on to help keep her centered throughout her day.

She has a difficult time not losing control at home these days, partially due to the necessity to act older than she feels and blend in and deal with sensory issues very quietly all day long, and partially because her father and I have separated and are divorcing.

Felicity and Jackson, Grace's youngest siblings, have never questioned why she acts differently. They have never spoken up accusing her of getting special treatment, or complained very much about how she throws fits more than all of the rest of them combined.

Recently, Grace was being cyberbullied by a girl at her middle school. This girl had started trouble between Grace and her friends in elementary school as well. I overheard Grace telling Lily what was going on and reading her the emails that the bully had sent.

Lily listened patiently, told her she was sorry that the girl had said mean things to her and about her to her friends, and that it wasn't right. She gave her advice on how she would handle the situation. Then she said something I think a lot of older siblings tell younger siblings: "I can pick on you, but NO ONE ELSE can!"

I appreciate that Lily doesn't make fun of Grace in a cruel way or use her diagnosis or hypersensitivity features to put her down. She seems attuned to that without ever having been told to avoid it. Lily also has a general appreciation for those with special needs and invisible disabilities because of the openness in conversation about them in my house.

Grace and Lily have recently started confiding in one another due to the separation and divorce their father and I are going through. I can't tell you how it warms my heart to see them develop a closer emotional bond.

A few years ago I never would have believed they would make good friends, let alone feel any loyalty to one another. Being a special needs sibling can be challenging, but Lily has naturally and without instruction, become a wonderful "big sister" and I'm proud of the young woman she is becoming.


I love everything about this post. And the supportive relationship between the sisters truly moves me to tears. 

Now that you have read Frelle here, please do follow her home to her blog Made More Beautiful and read her beautiful heartfelt words there, too.

You may want to start here, with this post about a big step Grace took one day, or this one, about Rigid Thinking, Expectations, and Public Meltdowns, or another post about Grace's Meltdowns and Real Life Coping Skills.

Do read this important post, Happy Half Birthday, You Have Aspergers about what it was like to talk to Grace about her diagnosis. 

And if you want to know more about Frelle herself and her difficulties, read this post where she talks about striving to feel like she is enough

Finally, go follow her on Twitter where she tweets as @frelle.

Thank you so much Frelle for sharing your lovely family with us here today.  

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