The goal of PT for Children with Down Syndrome

This is a fantastic article about the goal of physical therapy for children with Down syndrome, written by Patricia C. Winders, PT: The Goal and Opportunity of Physical Therapy for Children with Down Syndrome.  She is the author of a book that I use frequently in my practice entitled Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals.  This book is an inexpensive resource that offers many home program ideas for parents to perform with their children.  I love the fact that each chapter includes a progression of activities as the children gain skills.  The numerous photos are a major plus, too, as I am a very visual person.

When trying to help really doesn't.

As the mother of a child with special needs, I have come to realize how easily we as parents are undermined by well-meaning friends and family members.  Most mothers agree that unsolicited parenting advice is annoying enough, but when you have a child with unique needs, that unsolicited advice can be downright maddening and completely counterproductive to all the hard work we've done to help shape our children.  However, we realize that people are just trying to help since it's obvious how much we struggle at times. 


I want to start off by saying that this post is not meant as a criticism of anybody.  I merely want to educate people who love kids with special needs about the "atypical" parenting that they might witness and the reasoning behind it.

• "Stupid" Rules:  I know that people in my life feel that the rules in our family are a bit strict and even "stupid."  Most likely, this opinion is a direct result of our conservative values particularly about language, modesty, media, and safety.  I understand that we can be a bit more conservative and tight-laced than other families, but there is absolutely no need for anyone to mutter "that is so stupid" under their breath while we are in the process of disciplining our children (yes, we hear you, thankyouverymuch).  Talk about undermining!  
• An example:  The rule in our house is that nobody is to leave the bathroom without being dressed.  Yes, it is to instill the virtue of modesty in our house (especially since it's a house full of boys who are home with their mother all day), but the rule also serves to prepare my oldest son for public school.  We cannot have him walking around the school bathroom with his pants around his ankles! Regardless of what you think, the rule stands and our sons are expected to follow it.
• Putting In Your Two Cents While a Child is Being Disciplined:  Yes, the way in which we discipline our children can seem a bit odd at times, but be assured that most of these techniques are the result of intense research, parenting classes, and guidance from our children's therapists/pediatricians/neurologists/special education teachers/etc.  Much of what we say and do while disciplining our children is scripted, so please do not interrupt the disciplinary process -- interrupting the script defeats the purpose of having one in the first place!  Also, if a parent is in the midst of dealing with a royal meltdown and tantrum, please leave the parent and child alone!  We understand that you're concerned and seeing that type of violent behavior can be unnerving, but approaching a parent who is trying to stay focused on getting the situation under control to ask "what happened?" or "is everything ok?"  really does not help.  An exception to this is when the behavior is physically violent and someone is getting hurt or when the child's siblings are nearby and need to be looked after while mom or dad is busy defusing the situation.
• An example:  While my husband was disciplining my son using the problem-solving dialogue technique we learned at CUIDAR, a family member walked up and began trying to "help" and give an opinion about the situation.  We understand that you truly want to help out, but when you butt into the dialogue, it becomes worthless and the disciplinary process is prolonged.
• Another example:  In addition to using a problem-solving dialogue, we were instructed to use "When...then..." statements to help shape behavior.  Unfortunately, my son's homeschool "teacher" with whom we meet monthly sees this as "negotiating" with him and feels that they way we parent him contributes to his oppositional behavior during their monthly meetings.  To me, the statement "When you finish reading to your teacher, then you can draw with markers" is not negotiating -- it is earning a privilege for acting appropriately and doing what is expected of you.
• Changing the Circumstances Because It's You:  We all know that close relatives, friends, and godparents love to "spoil" our kids, but when parents have ground rules or have instated a consequence, we expect you to respect them.  If we have a "no throwing things in the house" rule, don't tell the kids "Oh, it's OK to throw things at my house."  If a parent puts a child in time out, don't approach the child and start a conversation.  What our kids need is consistency across the board and by changing the rules or circumstances, the children only get confused as to what appropriate behavior looks like.
• An example:  As a result of his disrespectful and reckless behavior, we told our son that he was not to have any juice until he apologized for calling a parent "stupid" and behaved appropriately during the remainder of our outing.  So being the clever manipulator he is, he convinced someone else to give him some juice.  When this person was told that my son was not to have any juice because he had lost the privilege, the retort was "Well, he'll get dehydrated!"  Trust me -- he will not get dehydrated after 20 minutes in 67-degree weather.  And now, the meaning of the consequence that had been set forth has been lost.
  
• Disrespecting a Child's Sensory Needs:  I know that this one is probably the most difficult to understand for most people.  Sensory Processing Disorder is not yet as accepted in the medical field as it should be, so a lot of people are simply unaware of what it is.  However, it is easy to learn what a child's sensory needs are, even if you don't understand why.  If a child is overstimulated, leave him or her alone.  If a child refuses to eat a certain texture of food, don't force it on her (chances are their OT or SLP is working on that!).  If a child turns his shirt or socks inside out because the tags and seams drive him crazy, let him be.  When in doubt, ask the parent.
• An example:  My son is working on self-regulation with his Occupational Therapist.  Over the past year or so, he has been learning to recognize when he needs quiet time to calm himself and he will retreat to a quiet room, to a tent, or some type of confined space until he feels ready to rejoin everyone.  When he does this, please do not walk up to him and start a conversation or play peek-a-boo with him.  It only serves to rile him up further.
• Giving Edible "Treats":  A lot of kids with special needs are on special diets, whether the reason be an inability to digest certain foods, allergies, or diets that help influence behavior.  We all know that relatives (especially grandparents) love giving kids treats like candy and baked goods.  However, if they know that a child is on a special diet, they need to respect that.  Changing a child's diet can be detrimental to their health and behavior and in some cases can be downright dangerous!
• An example:  Our oldest son has ADHD and ODD, along with a chronic medical condition.  He's on a high calorie diet without artificial colors or preservatives. Because of this diet, our entire family tries to avoid the artificial colors and preservatives.  So during a recent holiday, a family member came bearing sweet treats for the kids.  We allowed one treat for each boy, but told the family member that they could only have one.  Needless to say, I was unpleasantly surprised when I saw the kids walking around eating completely different sugary, junky treats just a few minutes later!  When this person was reminded that the kids were to have no more chocolate-covered licorice and marshmallows, she immediately became defensive and said "I'm a relation and I want to spoil them."  Well, too bad.  My husband and I put the treats out of sight and out of reach and had to deal with the consequences as the two older boys bounced off the walls until 11:00 that evening.

These are just a few examples that I hope will educate people on why we do what we do as parents and how to best help us out.   Sometimes doing nothing is the biggest help of all!  We also appreciate it when people ask us questions about how and why we do the things we do so that everyone understands and can be on the same page.  Again, I hope that nobody interprets this post as a personal criticism.  I really want friends and family members of children with special needs to understand how our lives are different and to help become encouraging members of the child's support system.


If anyone else has an example or word of advice, please share in the comments.  I'd love to hear from you!

Gross Motor Summer Fun!

Take advantage of the hot summer weather and enjoy these fun activities with your child:

• Swimming:  Other than being a fantastic cardiovascular activity, swimming is terrific for general strengthening, as the water provides gentle resistance in all directions.  Also, the water provides sensory input, both deep pressure and tactile input.
• Ride bikes, tricycles, scooters, etc.:  Not only is this a fun cardiovascular activity, but children improve their balance and steering skills.  The movement will also provide lots of vestibular input.
  
• Games like horseshoes, ring toss, tee ball, and badminton help your child develop hand-eye coordination.
• Playing limbo helps build flexibility and improve balance.
• Jumping rope:  Not only will your child get a cardiovascular workout, but jumping rope helps with jumping and timing skills.
• Water Play:  This is always a hit with the kiddos!  Have a bucket brigade to encourage heavy work.  Hold a water balloon toss to work on hand-eye coordination.  Have your children help you wash your car/bike/dog to get a work out, receive some sensory input, and to help out with chores.  
• Bubbles:  I use bubbles all the time in my treatment sessions.  Blow bubbles and have younger children bat at them while older children stomp or jump on them.  Catch a bubble on the wand and hold it just out of reach to encourage your child to rise up onto his/her toes.

Most of all, have a great time spending quality time with your child!  

 

Cord Blood Banking

July is cord blood awareness month.  We banked the cord blood from all 3 of our boys, just in case. Turns out, we may actually end up needing it for our oldest son since research is currently being done on medical conditions similar to his. Stem cells from cord blood are helping kids with brain injuries, cerebral palsy, leukemia...

Here are some testimonials from families of children who have benefitted from cord blood banking: Our Clients, Their Stories. (disclaimer:  This is from the company with whom we bank.)


Children's Hospital of Orange County also has a good resource regarding cord blood banking: July is Cord Blood Awareness Month.