Mommy’s Escape 6.0











{December 16, 2008}   Autism Twitter Day

Autism Twitter Day

 Today is a day for awareness and knowledge. It is Autism Twitter Day.

As many of you know, I am a mother of 6, 5 of which have some form of autism.

Autism is a complex neurological disorder that affects the development of a child and can be seen startingaround age 2; eariler for some others. Autism affects many aspects of the child’s development from speech, social skills, emotional skills, and behavioral skills. Children with autism are impaired in making the typical social connections and emotional bonds that children make as they grow up. Some are not able to speak while others are so sensitive to sounds, lights, and touch that they are sent into screaming fits. This is what is known as over stimulation of the senses that can also be diagnosed in some children as Sensory Processing Disorder.

Children with autism are as diverse and unique as the snowflakes that fall from the sky. They are not all like Rainman and they are not all silent rocking bodies trapped in corners. My children are examples of how diverse the autism spectrum can be.

Princess has what is known as Pervasive Developmental Disorder- No Other Symptoms; better known as PDD-NOS. She was diagnosed at age 6. This is a very mild form of autism. She is affected in the areas of social skills and emotional skills. She has a very difficult time making friends and keeping them. In social situations she is awkward and cowers whenever possible. Most people will come up to me and tell me she is shy. This is not the case as she actually has an innate fear of social situations and is overwhelmed by them. She will cry and shiver at times. She sweats and gets headaches when placed into these situations without proper transition and preparation. She has gotten better and does very well in school and is making great progress. She has made some companions but has a tendency of when she does make those connections, of being very direct and in their face, not allowing for personal space and pushing people away, therefore making it hard to maintain those friendships.

Little Man has High Functioning Autism which can also be considered as Aspergers but the diagnosis has not been changed yet. He was diagnosed with autism when he was 18 months old. He developed normally and had up to 7 words by the time he was 18 months old. On one fateful day everything changed. He stopped talking, started rocking, began headbanging and screaming when touched or loud sounds came around. Through intensive therapy and education, he has become a very verbal, bright, loving and happy child. He still battles with his autism when he has behavior shifts that cause him to behave erratically when he is overstimulated or understimulated . He still has sensory issues when it comes to loud sounds and dark spaces. He loves dinosaurs and can tell you almost anything about them and cars and trains as well.

Angel Eyes has classic autism. He was diagnosed at 17 months old. He never developed properly. We knew from the start that autism was his fate. Again, extensive therapies and interventions have led to him being able to walk without being on his tip toes. He can now hold himself upright and sit in a chair very well. He has gained some words and can express his wants in a simple manner such as “milk” when he wants milk; “juice”, “baby food”, “pudding” and “peaches”. He still cannot speak enough to say that he is cold, tired, feels bad, wants to play, etc. He has other vocabulary but he needs to be prompted to speak; he does not have spontaneous speech. He stims alot; this means that he flaps his arms, screams out inaudible sounds and shrieks, thumps and pounds on surfaces when excited; rocks his body and walks on his tip toes when barefoot. He cannot tolerate much texture in his mouth and that is why he still eats baby food and is slowly progressing to textured foods such as peaches and bananas. We are going to start corn in his diet next week. He hugs on command and kisses on command but there is no real emotion behind it although we know that he is happy when he sees us as he goes into stimming overload. The future is going to be harder for him but we have faith that he will  make it through. He has already come so far. Next step = potty training!

Sneaky Monkey also has autism. He too was diagnosed at age 16 months. He is alot like Angel Eyes except that he has more spontaneous speech and is more expressive and seems to show more emotional connections. He still has difficulty with loud sounds and being touched. He needs to seek you out for touch, otherwise you well get screamed at. He rocks constantly and stims like Angel Eyes but primarily he stims with his eyes. He fixates on objects and tracks them with his eyes. He has what is known as echolalia that causes him to repeat things multiple times; sorta like a broken record player. He has a tendency of screaming and throwing himself on the floor when he is overstimulated. He also bags his head hard enough to move the entire car when he bags against the carseat. Through therapy and intervention he too has come very far. So much so that his ESE preschool is considering having him participate in the higher functioning preschool class part-time next year.  He is mommy’s cuddle bug but this is only after years of occupational therapy and desensitizing him to touch.

Baby Boy was diagnosed at 13 months; this is earlier than most but based on the family history and the behaviors he presented, the doctor did not need to ask twice. He is like a combination of all of his brothers. He is currently undergoing speech therapy because he does not make the sounds a child his age should; he did not walk until the past few weeks. He has severe low muscle tone and sensory issues. He too cannot tolerate loud sounds or unrequested touch to his skin. He has oral sensory issues that does not allow for him to place anything with more texture than a baby food stage 3 in his mouth. The only other welcome object in his mouth is his bottle and pacifier. He cannot hold a baby bottle to drink therefore he needs to be reclined when being fed milk or juice. He rocks and headbangs just as hard and intense as Sneaky Monkey.

You see what I mean? They each have their own quirks and differences but in the end, I wouldn’t change them.

I am not going to lie and say that this life is easy. I spend many nights awake wondering what the future will hold for them and what it will hold for our family. There are things that I want to do for them to help them improve but because they are so expensive, I cannot. I wonder why did this have to happen to my children and what did I do to deserve this.

All I know is that I was blessed with these children for some reason and that I can make it through because they need me and I just have to – plain and simple – I need to be there for them and fight for everything that they need and deserve.

 

 

 

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Krystal, that was beautiful and heartbreaking at the same time. Your last paragraph was the perfect summary: they need you. I know it isn’t easy (6 “normal” kids wouldn’t be easy!), but you sound like your head/heart are in the right place. I’ll fly some prayer flags for you guys.

Wishing you all the best of love and everything this Christmas.
Peace,
IG



colepack says:

wow, I concur with Irish gumbo above. Both beautiful and heartbreaking.
YOU are a wonderful mother.



Heinous says:

This is a great post. You are a wonderful mother and person and you and your children are inspiring. Thank you for sharing.



Sorry to pull faith into it, but God entrusted you with these children because He knew you had the patience and abundance of love to help these kids grow up to lead promising lives. Krystal, you are a wonderful mom and your husband is a wonderful dad and the fact that you both are working so hard to get the resources your kids need speaks enormously.



Truly, heart-wrenchingly beautiful. I don’t know how you do it (and pull of being such a bloginista at the same time), but you do.



Wow, Krystal. Thanks for sharing all your children’s unique abilities and challenges. Autism is such a strange condition in the spectrum of symptoms it presents. It sounds like you have a good doctor to be able to diagnose them so young. I guess the family history does have something to do with that though, too. We all want the best for your family. Best wishes.



Cat says:

Thank you for sharing all of this with us.



Sammanthia says:

I’m taking a page from Jens book and pulling faith into it… I think it’s true that God never gives us more than we can handle and you, my dear, handle it beautifully.



I must concur with all here. What a wonderful person you are. As it is not easy I am sure with having 6 children, let alone having 6 living with a disability. They are blessed, You are blessed! Thank you for sharing.



Kia (Good Enough Mama) says:

I feel like a broken record, but once more, with feeling, I DON’T KNOW HOW YOU DO IT….



Lori says:

Wow, you have one incredible family. I know your life isn’t easy but it sounds like you are blessed by their lives, just as they are by having the parents that they do.
I once worked at a group home for non-verbal autistic children and it was a lot of work but I loved my job. They taught me so much and I have never forgotten the children I used to care for.
This was a very informative post…it also reminds me to be mindful and prayerful for those that carry heavy burdens.



Mama Dawg says:

I am not a religious person at all, but God Bless You. Seriously, God Bless You. Can I link to you?



Danette says:

Wow – I know we have also seen how diverse the spectrum can be with our three. They have many similarities but also many unique traits and each their own quirks, and I wouldn’t change them either. 🙂 It’s great that ya’ll were able to diagnose many of your kids so young. You are great mom, and your kids are blessed to have you (as you are blessed to have them!).



Khadra says:

((((Krystal))))
great post! I know how hard it must be, but I cannot fully comprehend. We have 4 kids and so far two have been diagnosed with Autism or delays and sensory issues, but I cannot imagine how it would be to have 6 and have everyone have their own set of issues.



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