August 2, 2017
We got to the conference on time, yay Allmans!! We took Dorian upstairs to his “Children’s Institute” classroom met by warm staff, eager to meet him. We were awarded a scholarship this year for him to be part of this fantastic program while our conference is going on simultaneously.
The morning was filled with introductions and a Keynote by Vince Carbone highlighting Skinner’s “Legacy to Education”. This was followed by David Mandell’s Session on “The Shifting Sands of Autism Policy and Policy Research”. Which all of the attendees attended and were informative and helpful. I sense that every one here has a deep interest in Autism and is excited at the prospect of parents and professionals networking to be part of a bigger, supportive team.
We went to pick Dorian up for lunch, he seemed pleasantly calm and informed us on the way outside to the picnic area, that he was not autistic because he liked Batman! We have had discussions about his “specialness” from time to time, some times he asks questions, other times he specifically does not want to have those conversations.
George and I decided that we wanted to attend the session by Dr. Robert Naseef titled; “Families of Children with Autism: Taking Care of everyone’s Needs”, in the afternoon. This title really spoke to us because we constantly feel inadequate as parents especially giving our other daughter who still lives at home, enough of our time. It hasn’t been easy for any of our children and we both feel we have failed them in many ways as parents. But Gabby is the middle child and it has always been easy to overlook this adorable and accommodating child. Several years ago, she started developing uncharacteristic behaviors that made us have to pay attention and intervene. Dr. Naseef addressed this later in his discussion stating; “we don’t want our typically evolving kids to develop symptoms to get our attention.” We can see now that this is clearly what she was doing, but we didn’t recognize it at the time that it was happening.
His discussion went much deeper than the title, building a strong foundation and contextual platform for the birth of a family. He referred to the book; The Birth of a Mother, by Drs. David and Nadia Stern, explaining that when a baby is born, a mother and father are also born as well.
He asked the audience if it was possible to “give your children equal amounts of time”? We all had to agree that it is impossible to do that, to which he added, “we give them each special time.” He shared that raising any child was difficult on the marriage relationship, “raising a child with autism is over the top!” He gave a list of what siblings want/need and reads as follows;
*They want parents to notice their accomplishments
*They want a fair amount of attention
*Time alone with parents
*Time alone with friends
*Freedom to complain
*A family life as normal as possible
*Information about their brother/sister’s condition
We are thankful, and can look back over the last few years and say that we have really attempted to build these habits into our once fragmented family, in an aggressive way.
Other nuggets that were shared by this Psychologist/ Father of an autistic son were; “We need to celebrate all the little things. Success is the reinforcement”. “Life keeps giving us a chance to learn what we need to learn.” And, “Help them live the life they have, the best way possible.” Dr. Naseef is also a WordPress Blogger and you can find his blog; “Love doesn’t keep score. Siblings do” with this link.
George and I found needed strength and affirmation from this session. The stress of raising a special needs child makes your deficits as a couple and as individuals annoyingly glare like neon sign, and only by God’s grace and strength are we walking this together. We got another glimmer of hope that as broken as we are, that we have what it takes to raise this son we have been given for another day. Dorian’s name means gift and we need to remind ourselves, often, to see him in that light- because we both struggle to. Thank you to all of our friends, family, and therapists for your help and encouragement to us in our story, and thank you Dr. Naseef for taking your time to share yours and listening to some of ours.