Since we celebrated a year with a diagnosis back in March, I wanted to document the massive changes we have seen since starting intervention/therapy with Deane. I will never know how much of this would have happened without all of these services, but we didn't have the luxury of waiting to find out. There has been far more than I can recall or document, but just this information is encouraging to me. I never know whether we are doing the "best" or "right" thing for him, but I'm continuing to listen for direction to fulfill my role as Deane's mommy and give him the life that he deems meaningful and happy.
Diagnosed: March 21, 2011 Updated: March-June 2012
Speech -
THEN - vocabulary of approximately 50 words, few used regularly, could not connect two words. Often repeated unidentifiable "nonsense" words.
NOW - inumerable vocabulary, able to speak in sentences, uses variety of tones (bored, excited, surprised, singing voice, etc.), understands a great deal of FFC (feature, function, class) related to various items, locations, and people, has begun using pronouns (about 50% correctly) on his own without instruction.
Communication -
THEN - really didn't answer questions except an occassional nod or noise, answers to yes/no questions were often not representative of actual feeling, nearly no joint attention, commonly dragged us by hand to item he wanted
NOW - answers a variety of types of questions (including Where, What, Who questions), initiates conversation, expresses need and wants verbally, responds well to nearly anyone if not other engaged/overwhelmed, initiates questions/requests with known adults and strangers
Receptive Language Skills
THEN - could sometimes identify items from group of 2-3, rarely followed a command
NOW - understands how to perform some routines without prompting, can identify items in large fields (10-16 items), always understands commands and sometimes can perform multiple step directions
Motor Immitation
THEN - would not imitate any motor immitation, even with vocal prompt ("do this")
NOW - loves performing nearly any motor immitation
Social -
THEN -liked children, but typically played alongside and didn't interact, would not engage in turn taking behavior
NOW - initiates social interaction, cannot maintain a conversation with a child, will play jointly at times, enjoys social interaction sometimes, beginning to play in turn taking fashion
Emotional
THEN - Completely unclear how he was feeling
NOW - Extreme difficulty with people being sad, but otherwise communicates emotions when asked and occassionally unprompted
Diet
THEN - Ate a variety fruits and some vegetables, typically 1 grain and either chicken nuggets or peanut butter as protein. Enjoys snacking 2-3x/day
NOW - The exact same except for less snacking due to snacks received at therapy as motivation in particularly M&Ms!
Sleep
THEN - only "put down" by Dad, takes 1-3 hour nap 4-5x/week typically from falling asleep in the car. Sleeps 8-9 hours/night, waking at 5-6AM, sometimes screaming
NOW - introduced weighted blanket early on and since that time has starting sleep for about 10 hours, rarely wakes upset. He no longer takes naps.
Cognitive/Academic (some examples)
THEN
Alphabet- sometimes left out letters
Counting - sometimes skips number, count to 20
Sorting - none
NOW
Alphabet - sings his ABCs, knows all sounds, identifies words by letter sounds
Counting- can count to 50-60, counts with 1:1 correspondence, identify recpetively
Sorting- understand sorting by color, size somewhat
Fine Motor
THEN - used utensils sparingly, but preferred finger food; made mess of liquids like yogurt, eat out of hand; strong aversion to properly holding pencils, coloring
NOW - still likes finger foods; will use utensils regularly, but need to remind not to also use hand (bites are too large), pre-writing skills are on age, but can see aversion leading to falling behind; doesn't enjoy coloring
Sensory
THEN - detested certain textures (slimy, dense, sticky, mushy), visual stimming, toe walking
NOW - will tolerate and even enjoy messy textures; tolerance will vary with mood; can work into textures (go from water play to slimy texture); improvement on visual stimming, but still looks in strange angle at times (look at my eyes command); rare toe walking or other physical coping tools
Our interventions have been documented in this blog and although we have tried a variety of therapies in the last year, we have simplified in recent months. Deane received 12 hours of ABA therapy, 1 hour of OT and 1 hour of social skills group. The rest comes from home with the help our "team"(aka - parents, sister, grandparents).
I decided not to get into problem behaviors extensively, but Deane's tolerance for schedule changes and transition has improved massively. We are recognizing that many things we believe we have mastered come up once again if we don't remain consistent or because he is growing and changing. We are very blessed to be working with our team of therapists and to have the family support to put in the needed effort.
One thing is abundantly clear to me after a year as an autism mom. No one person could be skilled enough to give their (special needs) child everything they need. I believe I am the best person to help Deane right now in many areas, but the breadth of areas of development mentioned above cover a wide variety of training and disciplines...and someone forgot to give me this manual when I left the hospital with my baby boy. I must rely on God to inspire the information I need today to help Deane and the wisdom to know when I must turn to someone else for help.
