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:

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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.

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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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SNSS: Unusual is not the word!

Today I have another Irish Mum here as my SNSS guest: Blue Sky of  Looking for Blue Sky. She has a complicated family with three children and an ex-husband.

Of her three children, the eldest daughter, Angel, is a lovely typical teenage girl; her younger sister, Smiley, has cerebral palsy and is non-verbal; and the youngest, Aspie Boy is, obviously, on the autism spectrum. Like I said. Complicated. 

Some days the intersection of one child's physical needs and another's emotional needs (or meltdowns) make life nearly untenable. But somehow Blue Sky finds a way through. Because, well, this is her family. 

She is a wonderful, gifted writer, and I have been reading her regularly since nearly the beginning of my sojourn through the SN blogging world. Furthermore, she helps out with the social media side of Irish Autism Action, aiding Jen, who was my other Irish guest from a few weeks past.

So come now, sit with me and listen to Blue Sky weave the tale of her family so beautifully, here:

Unusual is not the word! - by Blue Sky

It all began with a little girl called Angel. Adored by her Mum and Dad, she happily stayed with her childminder during the working day and then played out with her friends on the long summer evenings and stayed in playing board games in front of the fire when the nights closed in. She came everywhere with us and just seemed to enjoy our company.

It was an idyllic start to her childhood and almost everything I could have wished for.  But I wanted her to have brothers and sisters, and so I had two more children at four year intervals. And that's where life got in the way of my plans.

Into Angel's happy shiny world were thrown not one but two children with special needs. Smiley came first, and she was born at 27 weeks. She has cerebral palsy and some other undiagnosed disorder. My handsome boy had a perfect start in life but was diagnosed with aspergers at age 8, soon after my marriage broke down.

As Angel says, she can stop a conversation about families stone dead when she explains about hers! So how to describe the unusual dynamics between the siblings in this family? Well I'm going to be very logical and explain them one at a time...

Angel and Smiley
It was a huge shock to our little family when my waters went at 24 weeks on my second pregnancy. Smiley was born two weeks later and our lives changed completely. It soon became clear that this little girl was heading for a bumpy ride in life. She was in and out of various hospitals for her first two years, but Angel never complained.

Right from the start she took a huge interest in her very little sister and was a regular visitor to NICU. She talked to her, sang to her and even waved her magic wand over the incubator to make her better. If she was disappointed in having a baby sister who could not crawl or sit or toddle or talk, she never said, nor has she ever given up hope that Smiley will achieve some of those milestones one day.

As soon as she learned to smile my special little girl realised that this was her trump card. With her infectious giggle and innocent wide-eyed smile she makes everyone love her: and the more attention you give her, the more love she gives back.

Angel chats to her and plays with her every day, and Smiley's face lights up as soon as she sees her enter the room. But it can't be always easy. I know that Angel worries about her sister's future and who will take of her when I am no longer able. And I'm sure she gets frustrated with the amount of time it takes to do anything or go anywhere, but she never blames her sister.

Smiley doesn't complain without good reason, she loves attention but will only demand it when she needs something - like a drink, a trip to the toilet or a change of DVD. Despite all its limitations Smiley is so happy with her life and that inspires almost everyone who knows her, including her sister.

And yet. Angel wanted a sibling that she could do all the normal stuff with, so when I asked her if she would like another little brother or sister even if it meant she had to give me a lot of help, there was no hesitation and no happier child when my baby boy was born and he obviously had none of Smiley's problems.

Angel and Aspie Boy
As a baby he was perfect and so so cute, but also demanding and cranky and odd...he couldn't seem to control his body properly, he had unusual interests and was very late to talk.

I was worried, but most people just thought he was 'being a boy', and oh she loved feeding him and playing with him and watching him.

But as he got older his behaviour got more and more difficult. He got so angry and upset when things did not go his way, we would all end up in tears. Once he was diagnosed with aspergers at least we knew why, but not what to do...on good days they still get on well and laugh and joke and gang up on me by chatting in Irish. They still do things together - cycling, watching DVDs, popping out to the shop for messages.

But none of this happens on the bad days, and there are too many of those.

Aspie Boy and Smiley
In my naivety I assumed that my new baby boy would just accept his older sisters. They were already part of his family, so why wouldn't he? Well I was completely wrong. As a small child he did play with Smiley, but was also clearly jealous of all the time and attention that she needed. As he grew older and started to understand he limitations he began to be fearful of her.

Now he largely ignores her.  Once in a while he will find a toy that he thinks she may like and give it to her.  Carefully.  You see he still believes that he can catch cerebral palsy and is obsessed with not touching her or anything she may have handled.  Meltdowns can be triggered if she sneezes anywhere near him.  This can be difficult to avoid as they sit next to each other in the car.  And in the car he can't escape from her.

She may not be able to get out of her seat but she causes problems in other ways.  As she has got older she has got louder.  She is always happy and always smiles and laughs.  But now she screams with delight and for a boy with sensory issues this is almost unbearable. 

We have sound-blocking headphones for him but its not always enough.  So another reason why we spend so much time at home.  Luckily home is now large enough to position the children at almost opposite ends of the house, so the only time they really get close at home is at meal times and I face her away from him....

Angel
The one promise I made to myself was that Angel should never feel that all the effort was being made for Smiley... and then later for Aspie Boy.  She had to see her parents making superhuman efforts for her as well.

So I was delighted when she started gymnastics and needed lifts and leotards and a trampoline and help getting to competitions....it took up time, and meant dragging the kids out in their pyjamas some nights to collect her, but to me that was important. She did other sports as well, but the gym became her second home and the gymnasts her other family.

My job in PR also helped to make her feel special, because while we didn't go on foreign holidays and other stuff that families take for granted, I was able to provide experiences and freebies that were the envy of her friends and sometimes they got to take part in photoshoots or meet celebrities, so it helped to even the scales. In return she has been a second 'parent', a playful big sister, a pram pusher, a carer and a cleaner, as well as the best daughter any mother could hope for.

Putting them all together...
As a group the biggest problem I have with my children is their different interests. Angel is sporty, the other two are not.  Aspie Boy wants to stay in the house, Smiley wants to go shopping. Many activities worked well though when the children were younger: when Smiley was more portable and Aspie Boy more amenable.

We used to be able to go to the beach for a couple of hours before Smiley got bored, and when she was very little I'd dip her in the sea...thought she tended to turn bluey-purple very quickly! Aspie Boy has only been to the beach once in the past 18 months and insists that he will only go with a friend. But guess what?  Most of his new friends have aspergers and do very little except play video games.

Luckily Angel is now grown up and can look after herself and do her own thing as well as providing a bit of babysitting, so that I can take the other two out separately. Their Dad also does some activities with Aspie Boy when he sees him.

So yes we're an unusual family and life can be interesting at times for all of us including Angel. She's gone along with almost everything with good grace, except for the meltdowns.  They upset us all.

If we could just find a way to stop them then family life would be pretty good...

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Blue Sky has painted such a vivid portrait of her special, unique family here, I feel that I know them personally. I love how her love and concern for all of her very different children shines through in every word she writes.

Aspie Boy is currently going through a very difficult time, with nascent adolescence setting off a string of meltdowns that are becoming increasingly hard for Blue Sky to manage. My heart goes out to her, as she copes with the pain both and practical issues issues of this unfortunate development.

So follow her home to her blog, Looking for Blue Sky, and read more about her family and offer her your support. You will want to read this poignant post about wishing Smiley would speak, and this intense post about one of her son's first meltdowns.

Also read this short but devastating post about Blue Sky's wanting her old, sweet son back.

Finally, you should follow Blue Sky on Twitter, and go "like" her on her Facebook page.

Thank you so much, Blue Sky, for writing so beautifully about your family and bringing us into your world. It is my pleasure and honor to call you my bloggy friend.


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