Pallister-Killian Syndrome

MONIQUE

Born: December 23, 1980
Place: Indiana, USA

When our daughter was born I recall she had difficulty in nursing. So, I put her on formula. At nine pounds this girl was hungary. Her seizures were daily and when she was older we put her on seizure meds. I really wish that the medical society would have been more assertive in their recommendations. Thinking back, I feel as if we were living in the dark ages. Her seizures were three types: grand mal, petite mal and another that leaves me for the moment. She was tested in the hospital about four years ago to see exactly where the seizures were originating from and nothing was really gained in the way of knowledge. She has so many and they could not pinpoint with their electro-headgear. But we did get her on new meds that make her less lethargic and stop the seizure activity on the most part.

I did skip an important time in her life. Walking. Monique started walking at the age of four. Again, she was very low muscle toned and I used this theory: that if the brain cannot tell the muscles what to do (retardation), then let's stimulate the muscles to stimulate the brain!
I fought with physical therapists, teachers, doctors anyone who was involved with her programs. I had professionals tell us she would never walk because she could not crawl. I spoke to other mothers about this and many said some of their children, with no challenges never crawled before they started walking. So, this made me all the more determined. Also, I knew with my lifestyle and activity, a wheelchair would regress Monique's getting around in this world and it would be difficult in the long run for me to manoeuvre a heavy chair.
I was thinking way down the road. And I am fifty this year. We were blessed also to have many professionals that were determined to carry out our goals and dreams for Monique. I can remember when she attended the Wash. State School for the Deaf and Blind for two years. There the physical education teacher asked me, "Mrs. Gilbert, what do you want your daughter to do this quarter?" "I replied, I want her to walk!" He said, "fine then, I am going to put her on a treadmill", and he did. She started out at five minute sessions working up to walking the track one quarter of a mile at the end of the school year. She would scream and fuss over this cruelty. Never did like physical therapy - even when she was an infant. I will always be grateful for this teacher and his fortitude and all the physical therapists that have worked with her. Keep in mind we worked with Monique at home. Just like you would with a todler when they start to stand. We stood apart and had her walk back and forth between us. Oh, what a thrill that was.

Baby steps.
Getting back to the state school. But, before she could attend she needed one on one and they do have lodging there for the students who were higher functioning and independent. So in order for this placement, I had to find a fostor home where she could stay and attend school during the day. We were introduced to a lady that a caseworker knew down there in Vancouver, Wa. For two school years she stayed with this kind lady and attended school nearby.
She then came home on a private bus that brought all the children home on weekends. Making stops for them along the way meeting their familys. And then back to the meeting spot on Sundays back to the school.
I get teary eyed just thinking about those times. It was very difficult to let her go. She was only four years old. But, I prayed that this sacrifice would be for the benefit of Monique. It is burr under my saddle to this day. Now, they have specialists that come to the child's program/home/school and teach communication - until the age of 22. This is very important and I will go into detail on this.

As Monique has low vision and severe deafness (wears behind the ear aides, and hears low tones much better), a communication system needed to be in place. We use objects, or materials that represent the activity she is going to be doing.
Calendar Box Objects in box, in order or activity
Objects Toilet paper roll - Lavatory
Spoon - Eatting/Snack
Sports Bottle - Drink
Keyes - Car/Van
Hairbrush - Grooming

Video tape her with instructions and the aides working with her and these symbols and signs.
IMPORTANTLY: Place a small picture of the sign so the aide can use the signing with the object. This trains Monique and the aide.

The above are a few of what we are working on currently.

Other programs are:
Community - purchasing personal things, going to have a burger, helping at the laundrymat, library, zoo, nature center, etc.
Therapy - per what we have discussed with therapist and walking in her therapy shoes
Music - she really enjoys listening to her headphones and the music her high school teacher made her. We also found a music chair that has speakers in the back and on the sides of the seating area. The earphones are plugged into this chair that comes with an amplifier and she gets all sorts of vibration and music.
Vibrating type tools - found almost anywhere, massage type

Another teacher that I cannot give enough accolades to is Mrs. Veronica Cook of Shoreline High School. She made a Little Room, design by Lily Van where when Monique was standing in there, whenever she would move the objects they were in close proximity. Similar to when your infant is in the crib and you have these objects hanging above them so they can touch them.
Keep in mind Moe's vision is best between 12 - 18 inches, with glasses on.
Her developmental age is between 2-3 years old. The objects were sometimes low voltage X-mas lites, tactile like objects, bells, etc. Be creative in your own.
Also, the standing helped in the therapy of improving muscle tone. She also had her wiping off the books in the library, wiping tables after lunch in the school lunch room, listening during choir and going to music where they were learning to play steel drums.
The teacher videotaped Moe the two years she attended and to this day still use this video tape to show other professionals working with Moe what she should be doing so that there is no regression.
And I do not keep having to reinvent the wheel so to speak.
Also, as Moe's guardian this videotaping of her programs and what she does at home is instrumental for her future should I not be available for overseeing her program. If you have it written down in their plan other professionals can carry on the program. Simple!

Monique lives at home. We have a program in place in this state that is called a Specialized Family Home. I am the paid provider for Monique versus her living in a group home.
She attends an adult day program, six hours a day. She is picked up by a transportation company at nine am and returns home at three in the afternoon. On the weekends about three a month, Moe stays with friends and has a fun time with them while I do my horse thing.
For now all is going well. This works for us.

I would be happy to answer further questions in detail. I plan to write a book in the next year to help others who have a member or friend with this syndrome.
Peace be with you.

In the meantime do not hesitate to contact me.

mailto: westingrid@aol.com

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