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Alice

Alice is now six years old and has used her Squiggles Seat for more than five years - read how it helped her develop fine motor skills and participate in family life.

Alice lives with her older brother and adoring parents. She has cerebral palsy with spastic/dystonic quadriparesis. Her muscle tone fluctuates between low and high, with periods of strong hyperextension. She is able to floor sit independently, but will lose her balance frequently and unexpectedly. Alice can "bunny hop" on all fours to move about on a level surface. Alice can participate in daily functional activities with appropriate adaptive seating support. The Squiggles Seating System has provided this support for more than five years. The photograph shows Alice on her 6th birthday - her journey with her family is summarised below. 

Initial assessment at 7 months

  • Alice showed delays in gross and fine motor skills, as well as visual, feeding and communication skills.

  • Alice needed help to roll, and she had strong extensor tone in her trunk and neck.

  • Alice was able to sit when fully supported, but she was unable to reach for or grasp a toy.

  • She also had delays in self-help skills, especially nursing and bottle feeding during which she had difficulty co-ordinating sucking, swallowing and breathing. The photograph shows Alice feeding at 7 months.

Clinical Assessment in the Early Days

Alice required fully supportive special seating to manage her posture for oral motor therapy and gastrostomy feeds, therapies to develop motor and cognitive skills, and to provide opportunities for face-to-face interaction. Furthermore, experiencing stable and proper posture provided Alice with an awareness of the postural set necessary to develop gross motor skills.

Approach

Alice first started using her Squiggles Seat at 9 months old. She required hip supports and four-point pelvic harness, lateral trunk supports, pommel, foot rest, head support with lateral guides, and tray with horizontal toy bar. The photograph shows Alice on her 1st birthday.

Initially Alice was placed in her Squiggles seat 10-12 times per day in a supported and reclined (25 degrees approx) position for:

  • Feeding and administration of medication through G-tube

  • Reduction of reflux

In a more vertical position, the Squiggles seat was used to:

  •  Increase play skills, in particular fine motor skills and cognitive capacity

  •  Improve face-to-face social interaction with her family

Outcome

Alice benefited from the postural support her Squiggles seat gave her in developing her motor skills. Some of the optional features were used regularly in her therapeutic work. Using the tray adjusted to the correct height  was helpful in developing fine motor and play skills. She hand-painted this Christmas card with her  mother when she was 17 months old. 

Early in Alice's therapies, the horizontal toy bar was used to hang favourite toys and helped in developing reach and grasp. The photos show Alice playing at 18 months old.

By 20 months old, Alice’s head and trunk control had improved, and the lateral head supports had been removed. The back piece of the head support was left to cue her neck from going into extension and compromising her airways during meals. The lateral trunk supports had been lowered to allow greater trunk, arm and hand movements. The picture shows Alice at 21 months.


Aims of using of the Squiggles changed slightly to include encouraging (self) finger feeding and independent spoon feeding; improving reach and grasp; and further developing fine motor skills.

Here, Alice looks at a magazine at 22 months.

 

This  photo shows Alice enjoying a bowl of spaghetti at 24 months. By 29 months Alice could sit independently on the floor, but still required the use of the Squiggles Seat for her fine motor and cognitive daily home programme. Alice crawled at 30 months, and could pull herself to stand at 48 months.

 

At 55 months, Alice relies on her Squiggles seat primarily for joining her family at the table for mealtimes, but also for her continued home programme. The most significant component of the Squiggles seat at this stage was the 4-point pelvic harness and pommel, as Alice still has a tendency to go into extension.

 

 The tray continued to be used for table top activities such as fine motor work, cognitive play or oral-motor therapy, but also as a cue to stop Alice bending over and undoing the Velcro on her shoes!

 

At 41 months, Alice holds her brother's hand while they are sightseeing.  Alice's family found the compact size, easy breakdown and assembly of Squiggles very helpful in broadening Alice's horizons with sight-seeing, camping and cross country trips. The Squiggles Seat has accompanied the family on many trips, as the following photos will explain.

Here is Alice at 48 months helping her father sweep their vacation cabin.

 

In this picture, Alice (again 48 months) reaches across her tray to the picnic table.

 

At 53 months  on the beach. Alice's parents appreciated the "off-road" abilities of the Otto Bock Kimba base which allowed them to continue to do the things they enjoy as a family.

 

"Gone fishing" - with the family at 58 months. Note Alice's great posture and concentration as she holds the fishing rod!
 
 
At Disneyland with her brother. Alice is tired and her shoulders are a little slumped, but the Squiggles Seat holds her pelvis securely.
 
58 months at the garden centre.
 
 59 months at the ball park.
 
Posing at her brother's school, Alice also 59 months.
 
Alice with her family (still 59 months) at a sheep and wool festival.
 
At 60 months, Alice and her Squiggles Seat are really off road on the rope bridge!
 
The off road adventure continues on the trail at 60 months. The Squiggles Seat and Kimba base are up to the challenge!
 
 
At 67 months, Alice's visual-motor, cognitive, switch use / fine motor activity all rolled into one therapy using the Squiggles Seat. Note the angled tray to facilitate eye-hand co-ordination.
 

And finally...

At just over 72 months, and after more than 5 years' use, Alice is finally at the outer limits of her Squiggles Seat.

Alice's parents comment, "As parents, we've loved what it does for our child, especially how the back rest and seat shell closely fit and cradle our child's body. This has been especially important, given Alice's circulation problems and the potential for her skin to break down and heal very slowly. Given how often Alice vomits, and her lack of fine motor control, we've greatly appreciated the ease of cleaning the fabric!

We have also been very impressed by the capacity of the Squiggles to withstand five years heavy use in our household. It has both an elegant design and a sturdy construction. Despite the force of her extensor movement pattern, Alice never managed to come close to affecting the structural integrity of the Squiggles Seat. It has been easy to adjust for growth and easy to add and subtract options, and therefore has allowed us to accommodate our child's medical and physical needs which fluctuate several times a day.

The overall visual presentation of the chair, with its bright colour cushions, the design which minimises the impact of the chair, and the high quality finish, has added unexpected pleasure and joy to our life."

Adieu, not goodbye!

However, Alice's story doesn't completely finish here. Her therapists determined that the Leckey Mygo seating system is the next appropriate adaptive system for Alice, and her family has kindly agreed to continue to share her progress with us.

Watch this space!

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