Be Gentle

I stole the title for this entry from my friend's blog;  it completely embodies what this one is about.  Having a child with or without special needs can be seen as overwhelming and very stressful if you lack the proper information and supports.  If you or your family have a history of things such as depression and anxiety, you are particularly at risk.  Who we are at the start of this journey will dictate how we as parents react to things as they come up;  negativity can affect every member of the family.  I have seen it over and over again with my Mental Health patients and their families.  Burnout is a scary reality when you perceive yourself to be alone and helpless.  It doesn't have to be this way however;  there are specific things that you can do to help alleviate your stress.

There is a fantastic online book by Sue Buckley called Issues for families with children with Down syndrome.  It is a great read as helps the user define how the family unit itself works, what challenges will intercept it and what can be done to maintain a happy life for all.  In the chapter "Positive strategies for families", she outlines a series of basic strategies to address caregiver and family stress.  I've paraphrased and added a few things a bit to suit my own needs, but you can find the original here. 

1)  Identify strengths and weaknesses [Know your limits!]

• Look for resources and support. [Support can be emotional or friendship oriented, for advice, for information, for advocacy or include professional services.  Could be from family, friends, the community and parent support groups.]
• Take control and become an informed consumer. [Learn what is best to meet your families needs as a whole both with time and energy.  Learn to say no, learn to reschedule, learn to be in charge]
  

2)  Parents need to look after each other and their own health [Be gentle!]

• Focus on the whole family and a happy family life.  [All family members and the family band are important.  Family life, goals, etc should not be totally disrupted to accommodate one person in particular]
• Establish settled routines for your child and encourage good behaviour. [This includes therapy sessions, appointments,etc., which can interfere with attempts to establish good routines]
• Make full use of community and neighborhood support [It is worth the time to assess family, friends, the neighborhood and the community for the availability of emotional or practical support for you, your child or the rest of your family.  New programs or situations may have made something that once seemed impossible, now plausible.]
• Make full use of services and professional support [Resources are regional.  Find out what is available to help you emotionally and financially.  Work with your professionals to achieve what is best for you and your family]
• Belong to a local parent support network [Parent groups offer a variety of support from emotional to practical to advocacy.  It is helpful to talk to others with shared experience]
• Make use of advocacy support when battling for services [Parents groups can be strong voices in changing regional policies or availability of services]

3)  Identify any child factors that cause stress and seek help in resolving them [Seek help!]

• Use respite care to take a break and to reduce restrictions on family activities. [You cannot accomplish these things if you are tired or burned out from any number of factors.  Rest or spend quality time with other family members]
• Resolve to change or reduce difficult behaviors [Behavior modification of one's own reactions to stress and developing more understanding of your child and their needs can provide relief for the whole family.  This may require professional intervention, yet it is worth it for the sake of the whole family unit]

(Copyright © 1996-2011 Down Syndrome Education International). 

I can't say that I have mastered all of these points, but I have found it a very useful framework.  Know your limits, be gentle to yourself and seek help when and where you need it.  It will take time to establish routines, to set up resources and supports but it will be truly worth it.  Educating yourself is one of the best things that you can do as a parent, whether you have a child with a disability like Down syndrome or not.  If you have found yourself having difficulty, re-evaluate.  Get your supports in place, get your routines established.  Once you know the path you and your family will take, you will feel like you will be able to breathe again.  

Just Like Us

Back in January (what seems like a million years ago now), when we learned of Wyatt's diagnosis, I started my search for stories similar to mine.  I never had anyone in my life with Down syndrome... in fact I didn't know anybody who did.  I certainly didn't know of anyone who had multiples where one was "typical" and one had DS.  One of my major stumbling blocks was just that... no one that I was coming across had ever seen it either.

I kept searching as our case it had to be more than just theoretical.  Near the end of February, I found this story:  The Twins who are 'one in a million'.  I found this story comforting;  not only did other twins like ours exist, but they did not seem to be bothered by a few nagging questions that I was ruminating on at the time (What kind of life would Zoe have?  Would Wyatt be accepted by her friends?  His peers?  Would both of them have a social life?  What would life look like at 18?... and so on).  In the early days I read this story over and over.  Shortly after, I found this one:  When 1 twin has challenges, the other steps up.  I found this one comforting as well.

The search went on.  I was posting on a few DS places, looking for people in a similar situation when I was contacted by Shannon, who now writes under the name of "Justylou".  She has twin boys that are 11 now;  Davey has Down syndrome and Will does not.  Through her blog I have been able to see the future.  It contains normal, happy things, just like any other family.  Her blog is called "Love life and be gentle".  She ends every entry that way,  "Be gentle".  I strive to to emulate this every day.  Be gentle to those around you, be gentle to yourself.  I can't thank this lady enough, for her tireless efforts (she blogs almost every day) and for reaching out to me when I was floundering.  She too is participating in the 31 for 21 Challenge. 

Shannon was also kind enough to point me towards Multiples DS Listserv, a Yahoo Group for parents of multiples where at least one has Down syndrome. If my sense of  isolation hadn't started to erode by this point, it surely dissolved that day.  Twins, triplets, even quads (!) where some or one had DS and the others did not.  A whole group of people that know exactly the double whammy of having multiples and special needs.  I have learned so much from these folks.  It always helps to network and to have someone to talk to that knows exactly what you are experiencing. 

Initially, It was daunting to be faced with twins:  even more so to have one of them with a "visual" disability that we would not know the total extent of for years. As I've said, I can't describe how reassuring it was to be in contact with other families that faced the same challenges.  Knowing you are not alone is a key part in your journey.  I would recommend networking as one of your first priorities when and if you find yourself in shoes similar to mine.  We did and our lives were enriched by the people that have entered it.  People, just like us.

Factoid Friday: 7 Good Reasons to Breastfeed Your Baby With Down Syndrome

It may be difficult to breastfeed your child with Down Syndrome in the beginning.  I had to train Wyatt to latch properly and then how to eat without either choking or exhausting himself.   I was asked many times by (mainly) well meaning friends why I would bother.  I would mumble in my sleep deprived haze about antibodies and future weight issues.  Today's Factoids, now that I am a little more coherent, are good reasons why you should breastfeed your baby with DS.

1)  Breastfeeding provides antibodies and protection from illness.  Children with Down Syndrome are susceptible to bowel and respiratory issues.  Breast milk provides antibodies to fight infection and is easier to digest than formula.

2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development.

3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk.  Breastfed children score higher on IQ tests than those raised on formula;  this brain stimulation is particularly important in learning disabilities such as Down Syndrome

4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact.

5)  Breastfeeding fosters closeness.  It offers more time to cuddle and spend time and get to know a special needs baby better.  It also boosts the mother's self esteem by providing a way that she can do something meaningful for her child and their health.

6)  Breastfeeding enhances mothering skills.  The patience, encouragement, coaxing and teaching used to help the baby learn to breastfeed will be employed over their lifespan to help them reach their goals.

(Becky Flora, BSed, IBCLC, 2001)

Finally, Number 7 is on me...

7)  Breastfeeding reduces the risk of Type 2 diabetes.  People with Down Syndrome are prone to Type 2 Diabetes for many reasons, including increased insulin resistance, reduced lean muscle mass, increased weight and fat storage. 

And, that's the facts, Jack.  Happy Friday.

Therapy Thursday: Shaping Up

If you haven't realized it by now, hypotonia is one of, if not the major problem for people with Down syndrome.  The muscles are not only slower to respond and can be weaker overall, but they also have reduced endurance.  Ligaments are more elastic and joints more movable which often causes unstable motion.  Compensation is common whereby a child will learn to use one set of muscles as an alternative for a weaker set; this will cause improper motion and often result in chronic pain.  Obviously, since Wyatt is still a little baby, we can't tell him to drop and give us twenty or get him to blast on his quads.  So what then?

Most of what we can do for Wyatt (at this stage at least) is through play.  Thanks to our OT and workers from ICDP, we have a series of positions to allow him to play in which will help build specific muscles and develop specific skills. Each of these corresponds to a specific stage of where the child is positioning themselves (Supine - on their back, Prone - on their stomach and then sitting)  The following information is courtesy of Positioning for Play:  Home Activities for Parents of Young Children by Rachel B. Diamant (1992).

Child Lying on Back, Facing Parent (Supine)

Sit on the floor with your back supported by a couch, chair or pillows.  Stretch your legs out in front of you and place the child between your legs.  Support their head with a small pillow or blanket roll.  Bring the child close to you so that their bottom is close to your body and that their legs and knees are bent.  Ensure their arms are down and close to the body.  Ideas for play:  Hold a toy and encourage the child to reach for it and explore, sing songs, play patty cake, try baby massage or use wrist and ankle rattles.  Encourage the child to reach their feet.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact with parent and own lower extremities
• Enables reaching, hands to touch each other, the body and toys
• Develops stomach muscles
• Reduces arching

Child on Your Lap (Supine)

Place yourself on a comfortable chair or couch with your feet on an ottoman or coffee table so that your knees are at a 90 degree angle.  Place your child on your lap, facing you so that their legs are on your chest (with their feet reaching for your face) and their body is resting on your thighs.  Keep the child's legs together and their bottom securely against your waist.  Hold their hands or shoulders to keep their arms forward and rest their head on a pillow or blanket roll to ensure the chin is tucked in.  Ideas for play:  Sing songs, make faces, imitate sounds, use ankle rattles, baby massage, place a toy on the child's stomach to encourage them to explore it.

This position:

• Encourages the child to keep the head in line with the body with the chin tucked and the body straight
• Encourages the arms to be forward and down and the hands to come together
• Encourages the hips to be bent, the legs together and relaxed
• Develops eye contact, hands and legs
• Enables the hands to reach and touch legs/feet
• Develops stomach muscles
• Reduces arching
• Maintains the flexibility of the legs

Child Lying on Parent's Chest (Prone)

Lie on your back with your head on a pillow and place the child on your chest so that they are looking at you.  Hold the child at the chest so that they can support themselves on their elbows.  When they can support themselves on their elbows, support their bottom in order to facilitate them lifting up their chest.  Ideas for play:  Encourage head and chest lifting by singing, talking, making funny noises/faces, move in a slight bouncing or rocking manner to accustom the child to movement, encourage them to touch your face.

This position:

• Develops head control
• Developms muscles in the arms, shoulders and back
• Encourages child to be comfortable lying on his or her stomach

Child Laying on Stomach, Propped up with a Towel (Prone)

Place a towel roll under the child's chest as they are lying on their stomach.  Bring their arms forward, insuring they are in front of the towel.  Push down gently on their bottom if they require more assistance to push up on their elbows/hands.  Ideas for play:  place a safety mirror, pictures or interesting toys in front of of the child.  Encourage them to explore a fuzzy toy.

This position:

• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the arms to be in front and out from under the child (or behind)
• Encourages the elbows to align under or in front of the shoulders and the hands to be forward
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.
• Develops head control
• Develops arm, shoulder, back and neck muscles.

Child Lying on Stomach, Supported by Parent (Prone)

With your back supported by a piece of furniture or pillows, sit on the floor and lay the child on their stomach in front of you.  Hold one hand under the child's chest and place the other on their buttocks.  Lift the child's chest with your hand and encourage him or her to push up on their elbows.  Keep the child's bottom flat and the arms in front of the shoulders.  Ideas for play: place a safety mirror, pictures or interesting toys in front of of the child. Tap the chest lightly as you encourage them to lift.  

This position:

• Develops head control
• Develops arm, shoulder, back and neck muscles.
• Encourages the head to be up, in line, the body straight and the chin tucked
• Encourages the child to prop up on elbows or push up chest with arms straight
• Encourages the arms and hands to be forward and the elbows in front of or in line with the shoulders
• Encourages the hips to remain straight, flat and the legs to be parallel and not splayed.

Child Sitting on Parent's Stomach (Sitting)

Lie on on your back with your knees bent and a pillow under your head.  Place the child on your stomach, facing you, with their back and hips against your thighs.  Make sure their legs are 90 degrees to the rest of their body.  Hold the child by the hips and help them balance;  ensure the arms and legs remain forward.  Ideas for Play:  Gently rock and bounce to encourage balance.  Sing "riding songs" and play horse.  Imitate sounds and each others expressions.

This position:

• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Develops eye contact and facial expressions
• Encourages the arms to be free for play
• Encourages the head to be up and be in line with the straight body and the chin to be tucked.
• Encourages the body to be straight and upright, the shoulders down and the arms forward
• Encourages the hips to bed at 90 degrees
• Encourages sitting properly, not sitting on tailbone

Child Sitting on Parent's Leg (as Parent Sits on the Floor)

Sit with your back supported by a piece of furniture or cushions.  Sit the child on one of your thighs so that the child's feet are flat on the floor.  Support the child with your arm, sit them close and ensure their hips are bent to 90 depress.  Ensure the arms are forward.  Ideas for Play:  Sing riding songs, bounce gently and play horse, introduce and hold a toy for exploration, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Encourages the arms to be free for play
• Develops head control
• Develops back, body and hip muscles
• Develops balance

Child Sitting on Parent's Lap while Parent's Legs are Crossed

Sit with your back supported by a piece of furniture or cushions and sit cross-legged.  Sit the child in your lap with their back and bottom are close to your body.  Place their legs over yours so that their hips and knees are at 90 degrees and their feet are flat on the floor.  Support the child's chest if need be with one of your hands.  Ensure their shoulders are down and the arms forward.  Ideas for Play:  Singing finger play songs, patty cake, etc, take apart or put together snap together toys, sing riding songs and gently rock or bounce.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the floor
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play
• Reduces arching or extension of body in children with tight muscles

Child Sitting on Parent's Lap while Parent Sits on Couch or Chair

Sit on a couch or chair and sit the child on one of your thighs and put their feet flat on the couch (between your legs).  Support their head and back with your arm, ensure their shoulders are down, their arms forward and the hips and knees are bent at 90 degrees.  Ideas for Play:  Sing riding songs and play horse, introduce a new toy to explore, read a story.

This position:

• Encourages the head to be upright, straight and inline with the body while the chin is tucked
• Encourages the shoulders to be down and the arms forward
• Encourages the hips and knees to be at 90 degrees while the feet are flat on the furniture
• Encourages sitting properly, not sitting on tailbone
• Develops head control
• Develops eye contact
• Develops back, body and hip muscles
• Develops balance
• Encourages arms to be free for play

 
We have found that many of these are positions that we naturally hold him in.  It is also great to be aware of what skills we are honing or what muscle groups we are helping to develop. Also the play portion keeps it from being "work", which is nice for all of us.  Both the babies love their floor time and it feels good for us to be doing something that will help Wyatt develop to the best of his ability.