AUTISM NOW: Summary of tonight's episode on affecting the family

The first episode in a 6 part series about Autism aired tonight on PBS Newshour.  Tonight's episode was an introduction to a little boy with Autism and his family and though the material only lasted about 15 minutes, it was full of honesty and information.

Here is a summary of what I took from the episode and how it relates or doesn't relate to Brycen and our family:

• Robert MacNeil started with a description of his grandson, Nick, and how he was born with no obvious symptoms of Autism.  Around the time that Nick turned 15-16 months old, this had changed and Mr. MacNeil referred to Nick as a "different child."  His daughter (Nick's mother) also talked about how her son went to his 15 month appt on track with all development and how he went "backwards."  Brycen also regressed but not until after he turned 2.  Upon looking back at still pictures and video, it is true for him also that he seems to be two different children (before and after regression).  His eyes look different, his mannerisms and how he moves is different, his sounds are different, etc etc.
• Robert MacNeil and his daughter discussed how Nick also experiences physical illness like digestive issues and brain seizures.  At this time, we do not see any of these issues in Brycen but that does not mean they are not there.  Later on in the episode it is discussed with Nick's doctor about how many behaviors such as stimming and sleep disturbances are typically contributed to the "Autism" when in reality these actually may be a sign of pain.  This is something that I definitely think about a lot...are some of the "behaviors" that Brycen is having actually a way for him to cope with pain he is feeling??
• Nick's mother contributes his regression to a mixture of vaccinations he was given at his 15 month appointment.  While I really have no opinion on if vaccines could be a trigger to Autism rearing it's ugly face in our children (every parent/child has a different story about this), but I do know that the last vaccinations Brycen had were 6 months before he showed signs of regression so we do not believe vaccines triggered his Autism specifically. 
• "Whole Body Experience" was discussed in relation to Autism which I completely agree with.  Autism used to be thought of as a brain disorder, but now we are seeing that it affects so much more and it is so important that you have a team of doctors to treat various symptoms.  This is something we have not yet expanded on, but have discussed and researched over the last couple of years.
• When interviewing Nick's older sister, she gave some very honest answers about how she felt life pretty much revolved around Nick and Autism and that money is spent on his vitamins and doctor appointments, as well as she wants him to be healed.  She made reference to being bored with Autism, it's unfair, and wondering if he was always going to be autistic.  Huge, huge fear of ours with Aubree!  We know that Brycen's care eventually will turn to her when we are too old to make the decisions anymore.  We know that over the next several years, she will feel like she is pushed to the side and that we don't treat her fairly, and how our life revolves around his needs.  What else do you do as parents?  You try your best to give as much attention as possible to each child just like parents of NT children...but you know that it really isn't fair.  It's not fair to any of us...to Brycen to have more obstacles in his life that he didn't ask for...for us as parents to not know how to help our child and to know that we will be lifelong caregivers to our child (yep, no retirement or empty nesting for us!)...and definitely not fair to her!
• The mother expressed how Autism does not leave a lot of energy leftover.  So true...another reason why we have finally made the decision that it's time for me to not work anymore and to focus entirely on the kids.  We did not come into any kind of windfall of money in order to do this, but we know as parents of a child with special needs, there are far more sacrifices you need to make.  Pretty soon Brycen will be increasing therapy to 3 times per week (which is actually minor compared to some parents that take their children 5 days per week) and that doesn't even include the occasional dentist, regular doctor, psychiatrist, IEP's, Case Management, Respite & SCL service meetings, etc that are required throughout the year.  Most children may have one doctor appointment every 1-2 months...but my child will have at least 3 appointments a week.  How many employers would be ok with their employee constantly having to take off work?  In addition to that, but how many daycares are really set up to care for children with special needs (between safety, staff training, etc) which plays into the fact that where would my child go so I can work?   Parents are constantly trying to stay on top of all the things we need to juggle just as parents...and then adding in the extra obstacles of the special needs child is just absolutely exhausting.  Then unfortunately, you just can't go to bed knowing you have the next 8-9 hours of straight sleep to recuperate because your special needs child also experiences sleep disturbances and has for the last 4+ years.  The cycle just continues over and over and you just hope that you have someone to rely on that understands how exhausting it is and understands all the safety concerns for your child (this someone happens to be Grandma & Grandpa in our lives thankfully) because not just anyone can watch your child.  It's not that easy!  You may think it is easy when we visit with you for an hour and I have brought an entire diaper bag of things to keep him occupied (sensory toys, snacks, juice, anything trains), but please know that is just an hour and I can guarantee I prepared for a long time for that visit just to try to make things look "normal" to the outside person.  One day, I really do want everybody to see what the "every day" is like with Brycen but in the meantime, I do want to protect people from what it can be like (most of the time anyway...he really does have some great days!).
• The last part of the episode was Mr. MacNeil discussing how hard it is as a grandparent to see the "disconnect" of Nick and feeling like Nick is "tuning out and ignoring" him while they are at the store playing with trains.  I can imagine that Brycen's grandparents and extended family feel the same way depending on Brycen's mood.  I really don't want anyone to feel hurt by this because it's the same with us.  Some days are great and I feel like he wants to hug me, try to communicate with me...and other days, it's like he doesn't care if we even play with him or he would rather just jump up and down, stimming while watching the cars go by on the highway.  All I can recommend is to keep trying...don't give up on him and developing that relationship with  him!  Deep down, I think he really knows you are there and trying to connect with him but he just doesn't have the ability to pull himself out of it and let you know that he cares too.  Get down on the floor with him, talk about trains, practice letters with him, give him Hi-5's...he may not be able to communicate back in all of this, but we know he gets that people care about him if he can see that they are trying.  Just please don't give up on him because I promise that he really does know how much people love him...and give him the chance to show you that he has so much to teach each and everyone of us about life and acceptance!