Our Daughter's Arthrogryposis
By Barb Burke
Our family has come in contact with so many beautiful children and families struggling with Arthrogryposis. They have been such an inspiration and encouragement to our family!
My husband and I did some ground work prior to accepting the referral of our daughter from the adoption agency. We attended a full-day seminar on Arthrogryposis at our local Children's Hospital headed by Dr. Judith Hall, the leading expert on the subject. She has researched this condition for the past 20 years and revealed cutting-edge information on the subject. I also contacted a few parents who were raising children with arthrogryposis and found them most helpful.
We first heard of our daughter residing in a babies home in Seoul, Korea when she was 4 months old. At that time, she had been diagnosed as being born with a type of Arthrogryposis known as Amyoplasia, affecting only her upper limbs. Within 10 days of life, her biological parents placed her in the care of an agency for adoption because they were given little hope for her future, and felt unable to afford the needed care. We first met Soo (Excellent) Hee (Brilliant) through a picture at age four months. She was born with shoulders internally rotated, elbows fixed in extension,and flexion contracture of her wrists. She received range of motion by a therapist visiting her 3x's weekly in the orphanage. The US doctors believe this saved her small muscles from atrophying.
When Soo Hee arrived home at 10 months of age, I continued the range of motion therapy by using music and movement. It was a nice time for bonding and exercising at the same time. I continued with this for 30-45 minutes a day until around the age of 15 months, when she balked at this type of therapy.
I then began using a different approach. I used to place toys on high table tops to encourage her to reach. I bought a table top stove instead of one that stands on the floor for this reason. We used a tv table with legs on the floor to play with toys on instead of the floor. I would hide little dinosaurs and small surprises inside an egg of playdoah for her to dig out with her fingers. I first started with a very pliable playdoah so she wouldn't get discouraged. I found soft, scented dough at local craftstores. Over the months when we played this game, I would increase the stiffness of the dough, making it myself.
She started seeing a private occupational therapist at 1 year, and also had her first pair of night splints fitted for her. I learned a lot from observing her therapist interact with her. It is really necessary for parents to instill these techniques on a daily basis in order for the child to fully benefit. She is entering her 5th year with private therapy.
She was also enrolled in our county's early intervention program, which she and I attended once a week. The school therapist also visited our home once a month. Although her sense of balance was off a little, our daughter started walking within the normal time frame, 14 months. She was very cautious and took only a few falls. She had no protective reflexes but quickly learned to balance. Her legs have always been solid and muscular and eventually compensated in balance. She could run, jump, and pedal a bike all within the normal age range for her age. She has always fallen into the 50% for her weight and 70-90% for her height
At age 2 she was evaluated at an Arthrogryposis Clinic at a Children's Hospital. The doctors agreed hers was a mild case, finding all muscles present in her arms. They believed, over time and use, they will grow stronger (which they have). They do not see her as a candidate for muscle-transfer surgery. Her wrists, which were severe at birth, now have good flexion and function.
At age 2 she was able to draw, self-feed, turn pages, and carry objects with a fairly good grasp. She could drink from an open cup with 2 handles or a "tiny shot glass" with one hand. At the time, 4 fingers were somewhat effected. At age 2 she was beginning to learn to dress. She seemed to also have a mild case of this condition in her jaw. She drooled constantly for the first 2 years. She would chew only with her front teeth. She accepted my direction when I reminded her to chew with her backteeth. Chewing gum was good therapy to help wake up those sleeping weak muscles. In 6 months, these 2 techniques completely eliminated this problem in her jaw.
At 24 months her cognitive skills were tested by a group of doctors at our military medical center. Our daughter's test scores were above the 36 month old level. The report stated "she is speaking in twelve-word sentences with pronouns. She knows all her colors, shapes and her sex. She can stack a tower of 15 blocks, and holds a pencil properly."
At age 3, she was tested and did not qualify for our county's developmental pre-school. She received a test score of 95% in gross motor and 90% in fine motor. We disputed these results stating they were deceptive and the test too standardized for every child. She, in fact, has a disability and needed the developmental pre-school to learn basic skills for the kindergarten program. The issue was never cognitive, but adaptive skills needed to help herself, like removing her coat, using the bathroom, zipping a backpack, opening heavy doors, and experience dealing with her limitations among her peers.
The school district agreed to pay for an outside evaluation for her. This was done, and the recommendation was to place her into pre-school for the reasons stated above. She did very well in the pre-school setting and remained in it for the next year and a half.
Our Daughter Today
When our daughter was 5 years old , she entered a private academic pre-K program 3 mornings a week. This was the first year she was in a class where she was the only disabled child. She was very excited the first day of school, but worried apprehensively over what the other children might say about her arthrogryposis. I told her that, very often people are nervous about something simply because they are unsure what to say. We decided that if anyone did mention it, she could just tell them she was born with arthrogryposis. This, in fact did happen when a little boy asked, " Why are your hands different?" Our daughter relayed to me she simply said what we discussed and then she said, "and we thought no more about it mommy."
We invested in a large above ground pool 5 years ago when her therapist suggested she would benefit from it. It has helped strengthen her arms. We believe the freedom of movement under water was fantastic therapy. At age 4, she was again seen at the Arthrogryposis Clinic and found to have full rotation in both her shoulders. She was self-suffient at age 5 and, other than a little more weakness in her arms, could do most anything any 5 year old could.
One of the methods I used in teaching her was to have a large box of oversized dressup clothes at her disposal. Initially she needed me to stop whatever I was doing to aid in her changing into one of the outfits she picked out. Over time, I would slip some new intriguing glittery outfit in the box, that required more difficult attention with snaps or buttons. Over a year she came to me less and less often for help. An example of how good she has gotten in this is my memory of the first day of pre-K for her. I was awakened by her standing along side my bed at 6:00am, fully dressed and hair combed, waiting for me to take her to school.
When she was to enroll in kindergarten, upon the recommendation of her pre-school teacher and O/T therapist, we had her tested and she qualifed to skip kindergarten and entered the First Grade as a 5-year-old, (soon to turn 6). She had a wonderful year in First Grade and was very popular and the tallest in her class! She is now 7 years old and has been selected, based her test scores, for a new, self-contained gifted program where she will be in a combination class of Grades 1,2, and 3 taught at an accelerated pace with other gifted students..
Our daugher's determination and gentle nature bring such joy into our family. We each feel we have grown knowing her, and sharing our life with her. She reminds us constantly of what is really worth valuing in life and she is a treasure beyond words.
Copyright 2001 Barb Burke
mily by adoption. She is a wonderful advocate for children in need of families and children with special needs. Visit her website www.angelfire.com/journal/adoptionhelp for information on her family, special needs of children and an excellent overview of resources for Financial Assistance for Adoptions.
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