This is not something I discuss real often for several reasons one is because it's something very personal and private in a lot of ways,but recently I'm finding myself wanting more answers and so would like to pose some questions for you parents out there that deal with this kind of thing.
When Ariel was born she had severe Respiratory Distress Syndrome and was transported by ambulance to the NICU in another hospital.I was told she may be there for 4 months,but after a lot of prayer they called me and said "pick her up" it had only been a week,but she made remarkable improvement.She had some slight delays.Was a bit delayed with sitting up and only did G.I. crawls,but after 6 months of O.T. she was fine and totally normal.
She was very normal I had homeschooled her from the beginning she was a little delayed with reading,but other than that was a very social and pleasant little girl.She sang in church was in plays and modeled professionally had no problems with crowds or new people.
Then at the age of 9 something happened I've been told progression of the disease affecting her and her brothers brains.Before I was constantly told no this is from birth.I kept shouting from the rooftops she did not used to be this way.At 9 my daughter no longer even knew her shapes.Something dramatically changed it seemed like overnight.She went from this energetic little girl to a girl seeming very lost and confused.
I will admit for the longest time plugging away at her school work not wanting to get formal testing,because I kept thinking they are just going to say I'm a bad homeschool parent.I finally realized we needed to figure something out.After the testing Ariel was showing major delays in all areas academically.After three years of Speech,language and learning they dropped her saying she had gotten worse than when she started.I was devastated.Ariel not so much.She would get so stressed to the point of crying because she could not remember things and felt like she was failing at speech.They put no pressure on her,but were very loving and attentive towards her.She put the pressure on herself wanting to do well.
It must be such a terrible thing to want to learn to want to do things your brain just doesn't let you do.I also started seeing something else pop out at this time this aversion to certain things like certain,fabrics,crowds,new people,certain noises.I started seeing my daughter get more little girl like in a lot of ways.As I was seeing other girls her age doing more woman like things I started seeing my daughter become more and more obsessed with animals and just things she did.She also started wanting to be around me all the time,I mean physically next to me and touching me all the time.
She also started having all these weird and wacky medical ailments,like Osteomyelitis in her tailbone and Tenosynovitis among many other things.
Fast forward to June of 2009 and she had her first convulsive seizure 15 to be exact back to back we could not get her to stop seizing.After many meds and a placement in PICU then one of the meds brought on a severe case of Dyskenesia(a movement disorder) before they realized it was this they were trying to tell me it was behavioral,which was an absolute joke. They had given her almost 10 I.V. bags of medications to calm her brain down,enough to tranquilize an elephant and now all of the sudden she is going to decide to act out.It was lunacy.After one doctor came in and hurt her by squeezing her,poking her feet with pins and dropping metal trays on the floor to startle her and she had absolutely no reaction they then started realizing this was something else entirely.I kept telling them it was a reaction from the Phosphenytoin, because the minute they put that in her vein she started hitting and became violent.
That entire week my daughter was not in her own head at all.She remembers nothing.
This picture is from the day she got home from the hospital.She looked so bad and the brain issues got so much more severe.She was afraid all the time had to be physically touching me constantly and even to this day has this pattern of rubbing up and down my arm continuously when she's nervous.The sensory issues had gotten so much more severe.
After this her doctor signed her Make A Wish papers and so we went to DisneyWorld.Sitting in the plane we had turbulance that terrified her she had her two little stuffed animals in her hands and she was crying and terrified.
She also started going in and out of Status Epilepticus all the time.With every seizure cluster the brain issues kept getting worse.One of the hardest things is going to new doctors and them asking all these questions about graduation and things like that,because they haven't read her charts.
She had a previous Neuropsych that said the right side of her brain barely processes at all,which is why she can do so many physical things but very few academic ones.She is now undergoing a new Neuropsych eval to pinpoint exactly how her brain works and what it is doing.
My question for a lot of you parents out there is when dealing with severe sensory issues what is the best way to handle it? Did you always see issues from childhood or babyhood? There are times I do force her to do uncomfortable things,because I don't want her to be so far in a shell she becomes unreachable.It's hard for people to understand who haven't dealt with something like this.Sometimes it's hard for me to understand as well,because my brain isn't that way I tend to be more of a social butterfly,but Ariel is not.
Although I will say I'm so proud of her.She wanted to invite everyone from the new church we have been attending to her birthday party and we had 85 people come she did amazing.I was so proud of her.Just to see her laugh so much and be so happy was such a blessing.Since we've been at Northwest Baptist Church where there are several special needs kids she's absolutely bloomed.We do a lot of things together as a group and she even got Baptized in front of everyone.I won't say she is all better I really don't think she will ever be 100%,especially with this genetic syndrome that we are told is progressive,but to see the strides she's made has melted my heart and made me so happy and proud of her,she is my hero!
Linn~ my son Jacob has sensory issues as part of his Autism. It is very frustrating trying to understand how ordinary noises can be so uncomfortable for our kids, or how intimidating "normal" family gatherings are when crowds make you anxious. I think the important thing is to not completely overwhelm them to the point of a meltdown, but to continue to provide "gentle" challenges to the things they are so sensitive too. Sometimes it helps, sometimes they flip out and you have to start over at square one. Medication has helped Jacob cope with his Autism, but he will always have those challenges. "The Out of Sync Child" book was helpful to me.
ReplyDeleteThank you Donna,you know I have that book and have yet to take the time to read it.I need to make a point of it.
ReplyDeleteAriel certainly should not be held in comparison to an autistic child, her war is on a completely different battle field with a more fluctuating extreme of needs/requirements at varying peaks in relation to her seizure patterns.
ReplyDeleteYou may find Ariel is able to cope with situations better when her neuronal excitement is more reduced (free from seizures/low seizure pattern that day). On her low excitement days the signals will have the opportunity to reach the specific areas needed to engage in social activities, on bad days or prolonged seizure days these areas will be blocked.
With Ariel you need to allow her to have majority control over what she can do/can’t do, even though it can be frustrating. All you can do is support her, encourage her and try and develop her confidence - which you are already doing by the bucket load :)
The fact that her confidence has gone through the roof since attending her new church and she had the ability to invite so many people to her Birthday party is certainly a step in the right direction. You are certainly doing something right, she may seem stuck in a trench to you - but she is blossoming to me. She is really doing so well, considering what she is going through every single day. I’m not surprised you are so proud of her, she is a credit to you and your husband. You have such a beautiful family (inside and out).
Thank you so much.I don't think Donna was so much trying to compare them,but saying that her son with Autism,does have Sensory disorders too and what she does to help him.I know Ariel had made a tremendous amount of progress and I am so happy that she has and want her to have the happiest most successful life ever.
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