Friday, December 4, 2009

Catastrophic Diagnoses: Tips for Friends and Families

Autism is a catastrophic diagnosis.  It is right up there with cancer, heart problems, Muscular Dystrophy, juvenile diabetes, etc.  When parents get the diagnosis of an Autism Spectrum Disorder, they are overwhelmed. The child, for whom they had unlimited dreams and hopes, is gone.  While most parents are equipped to handle a sick child, most are not equipped to to parent a healthy child with a neurological developmental disorder.  And no parent is equipped to lose their child.  Autism steals the child these parents knew.  They will never stop loving the child, but it is akin to a kidnapping--the child you get back is never the same.

Do not minimize the diagnosis by saying things like, "At least it isn't life threatening".  For one, you would be wrong--Autism CAN be life threatening.  Children on the Spectrum can be "escape artists" and wander away from home.  They will not pay attention to traffic and many are drawn to water.  Many children on the Spectrum also have severe allergic reactions, seizures, and other health problems.  Secondly, you are not addressing the parents' grief.  They did LOSE THE CHILD THEY HAD!  It does not mean they will never get them back, but acknowledge their loss and their grief.

NEVER say, "If you need anything, let me know" because most people will not take advantage of that offer and it doesn't feel sincere, when it is uttered.  Instead, OFFER to help and learn."Do unto to others as you would have them do unto you".  Think of them as parents of sextuplets--what would you want others to do for you, under those circumstances?  Learn HOW to play with a child on the spectrum.(Read Stanley Greenspan's books on Floortime).  Babysit. Make dinners.  Mow their lawn. Offer to stay overnight, and get up with the child, if he is a poor sleeper.  (Sleep deprivation is a major problem for parents with children on the Spectrum)  Pitch in with friends to get a cleaning lady.  When you go to the grocery store, call and see if there is something you can pick up for them.  Many children on the spectrum require MANY therapies:  speech, occupational and physical.  Offer to watch siblings, while they take that child to their therapies.  Find SibShops in your area and offer to take the siblings of the ASD child to them. Stay in contact, even though they may slip away.  Depression is common in parents of ASD children.  Try to be sensitive to "girls/guys night out" situations.  Many couples have learned to make sure each one gets at least one of these a month, so they can stay connected to others and "get away from the autism" for a few hours.

Because there are SO many treatment and intervention options, be a sounding board for the parents. Parents tend to feel panicked that they only have a "certain window of time" to help their child.  While this is partially true--the brain is much more malleable before age 5, there are still things that can be done, as a child gets older that can help improve skills.   Support them, but also be a "devil's advocate", to help them make the best decision for their child.   ALWAYS support their final decision.  You and your friends will hear of parents who have had EXTREMELY successful treatments and interventions.  However, what works for one child, does not always work for another.  Each child has different symptoms, causes, and personalities.   Because of this, encourage starting with the least expensive (diet changes) and then only ONE change at a time.   (I have seen parents who have implemented the GF/CF diet, hyperbaric chamber, ABA and PLAY all at once and when there was some improvement, they didn't know WHAT was causing it and when there were regressions, they didn't know.  Stick with one plan at a time for at least 6 weeks.)  .  If they choose to change the diet,help them find foods and recipes that their child can eat. 

Autism does contribute to stress in a marriage and, therefore, divorce.  Encourage "date nights" by babysitting.  Encourage counseling.  Encourage spirituality.  95% of parents with special needs children do not attend religious services.  If your church or temple does not have a "special needs"  ministry, try to start one. 

Don't just TELL them you are "there for them"--BE there for them. 

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PLAYing with Passion

Autism, Floortime, PLAY Project