So, why autism?
As I mentioned in part one, when
we first started at the therapist office they set up 6 month goals for Sam.
When this was done, we were told that he may reach them, he may not. That every
child is different and his progress will be his own. They will adjust the
goals as needed when we hit the 6 months. These goals were nothing crazy and
was hopeful of the progress we would see in the coming months. Over the months,
progress was slow going for us. It took us a several sessions to understand and
feel comfortable with what we needed to be doing at home to work with
Marshmallow every day. With each session, we started to feel more comfortable.
We did not see a lot of progress to start, but did start to see little by
little some progress. But it was most certainly not the progress I was hoping
for. When his 6 month evaluation came around I was frustrated with the little
progress Marshmallow had made. While he made progress, it was nowhere near
where we had hoped. And this is not to say we were not excited to see the progress
he had made because we were thrilled with every milestone he hit, it just was
hard to see the progress take so long and disappointed to see where he was with
his goals at 6 months. So six months
into our speech therapy journey this is where Marshmallow was with his goals at
2.5 years old.
Goal 1 : Will increase his independent expressive vocabulary to 50 words. Progress good. Goal not yet met. He is using 42 words independently.
Goal 1 : Will increase his independent expressive vocabulary to 50 words. Progress good. Goal not yet met. He is using 42 words independently.
Goal 2 : Will use 1 – 2 word
combinations with semantic relations (beginning with words containing early
developing sounds) to request, reject or protest provided minimal verbal cues
in 4/5 opportunities across 3 consecutive sessions. Progress fair. Goal not met. He is using more words independently, but
requires a verbal prompt, choice or model 90% of the time. Using 2 words
combinations in imitation only.
Goal 3 : Will receptively
identify body parts and clothing items in a field of 3 provided no more than 2
verbal prompts and visual support in 4/5 opportunities across 3 consecutive
sessions. Progress fair. Goal not met. Identified
clothing in a field of 3 in 4/5 opportunities in one session.
Goal 4 : Will follow 2-step
related directions provided visual support and no more than 2 verbal
repetitions in 4/5 opportunities across 3 consecutive sessions. Progress fair. Goal not met. Following 2
step related directions with 60% accuracy given a gestural cue.
Goal 5 : Will receptively
identify common animals, household items and transportation items in a field of
3 provided no more than 2 verbal prompts in 4/5 opportunities across 3
consecutive sessions. Progress fair. Goal
not met. Identified 4/5 animals in a field of 2 in one session and 2/5 in a
field of 2 in another session.
Goal 6 : Will use words,
environmental sounds and/or gestures to communicate during conversational
exchange throughout a play activity in at least 3 activities per treatment
session across 3 consecutive sessions. Progress
good. Goal not met. He is making environmental sounds throughout play
activities with models. Uses gestures (pointing) to request an activity, but
will rly on grabbing items independently without a redirection to use words. He
requires a verbal prompt to use words throughout the session.
Overall, he made a progress, but
had not met any of the goals and was only relatively close on two of them. For
the majority of the goals, he was not even close. They readjusted the goals and
continued most of them for him to reach in another 6 months. Ultimately, I was
disappointed and most certainly frustrated. Not that it was not working or that
Marshmallow was not getting it, but because I was hoping for more progress. At
this point, I became more concerned with why he was having slow progress. Was
something else playing a part in his communication issues? Was this a deeper
issue that we had not discovered yet? What more can we do to help encourage his
progress more? I was full of questions and no answers. I sat on these questions
for a little while, and in the meantime I started to notice certain things that
raised some more red flags for me about our son.
About this time Marshmallow had regressed in his bedtime routine. He was always easy with bedtime, to the point he would go upstairs to his room, climb in, pull his blanket up and say night night and give me a kiss on his own. He now would no longer put himself to bed, or even sleep in his own room and continued to have bad night terrors. Our independent child, was no longer super independent. He started to cling to us more. I was told it is just a phase, but it got worse. Bedtime is STILL a major problem over 6 months later. I started to pick up other subtle things that I had either not taken the time to notice or brushed off as “toddler” behavior. In the next couple months I noticed that he could care less about playing with other children. That he would make little eye contact when spoken to. I noticed he would be in his own world and without me getting his eye contact, he would not “hear” us or respond, that I had to physically tap him at times or get in his face to get his attention. I noticed he would flap his arms in extreme excitement and the bad tantrums were becoming extreme. I noticed he was very particular about how toys were played with and would meltdown if we did something that was not “his” way. He would become obsessed. I noticed when in places with lots of activity, he had no clue what to do and would become a ping pong ball bouncing from one thing to another, never really focusing on any one thing. And the list goes on. My list of concerns started to grow more and more. Some days I felt like a crazy person looking for issues and other days I just knew his speech delay had a deeper issue connected. I had that mommy gut feeling again, that something was off. And my focus was on autism.
A little more time passed and I eventually I had the courage to bring it up with the speech therapist. She told me to talk to our pediatrician to see what she thought and to get the next step. It took me a while to get the nerve to set up that appointment. Part of me knew and wanted answers, the other part of me was scared of what we would find out. Sadly, I again had little support and was very much pursuing this on my own. I finally made the appointment. It was for a couple weeks out, as it was going to be a longer appointment with our pediatrician. We went. And sadly I was heavily disappointed in how it went. She saw some of my concerns, but basically said that it was up to us if we wanted to pursue anything. Which I do understand, but I was hoping for some confirmation. I basically left the appointment frustrated that I did not have great support in my questions from our pediatrician. She had given me a sheet of paper with information that basically said to contact our insurance to see what coverage we had for behavioral/mental health. The wording made me uneasy. I thought we would just see another pediatrician or specialist similar to what we did with speech. But mental health? This was not what I was expecting. I did not want this following my son forever, or for him to be considered a mental case. What was this all about? I just wanted to have him evaluated for autism, not a mental disorder. How was autism a mental health issue? What did that mean? How was it not similar to just getting him therapy like he was for speech? My worries and lack of support made me step back for a bit. I had to take time to process what this all meant and really consider what pursuing my concerns would mean. Honestly, I had to get over the stigma and become okay with whatever I was to find out, if I pursued all this.
In the meantime, started to ask around on various mom groups to see what others on this same journey had dealt with. What options they took and what direction was best to really take. I finally was getting some support and realized I was right in pursuing this now. That this was about getting Marshmallow all the help he needs, during the most important years, and finding ways we can best support him. So I made the calls. Only to get nowhere once again and fell like I was banging my head into a wall over and over again. Our insurance had given me a list of 8 offices to call. I called each of them, all of them I reached only answering services and left messages. Eventually hearing back from each of them. Not one could help us. None of them took patients Marshmallows age or they were no longer taking new clients. I was at a dead end and extremely frustrated. I was overwhelmed with everything already and to get no answers and have no direction to go I was at a loss. I called back the insurance for more information and tell them I was getting nowhere. I pushed hard during the call for answers of where do we go from here? After being transferred a couple times, I was told they were going to connect me to an autism case worker. Awesome! Finally something. I left him a message. He got back to me and we talked for about an hour. He agreed that there was reason for concern and to pursue an evaluation. He gave me information on who he felt was the best person for us to contact.
I called the office and left a message. Then the waiting game. It took a while for her office to get back to me and get the evaluation appointment set up. But we got an appointment set up!! FINALLY a step in a direction. After I set up the appointment, the therapist called me to discuss Marshmallow. We talked for a bit and told me what she needed from me before the evaluation, what the evaluation would look like and tried to prepare me for what was ahead. So the evaluation was set for December, which was about 3 weeks away! I was excited to not be hit with a 6 month wait, which is something I was half expecting. We finally were on a path and heading in a direction. Where that path lead, was a whole new question.
Continue reading about our journey in Part Three.
http://smorepuma.blogspot.com/2015/02/real-life-part-three.html - part three
http://smorepuma.blogspot.com/2015/01/real-life-part-one.html - part one
About this time Marshmallow had regressed in his bedtime routine. He was always easy with bedtime, to the point he would go upstairs to his room, climb in, pull his blanket up and say night night and give me a kiss on his own. He now would no longer put himself to bed, or even sleep in his own room and continued to have bad night terrors. Our independent child, was no longer super independent. He started to cling to us more. I was told it is just a phase, but it got worse. Bedtime is STILL a major problem over 6 months later. I started to pick up other subtle things that I had either not taken the time to notice or brushed off as “toddler” behavior. In the next couple months I noticed that he could care less about playing with other children. That he would make little eye contact when spoken to. I noticed he would be in his own world and without me getting his eye contact, he would not “hear” us or respond, that I had to physically tap him at times or get in his face to get his attention. I noticed he would flap his arms in extreme excitement and the bad tantrums were becoming extreme. I noticed he was very particular about how toys were played with and would meltdown if we did something that was not “his” way. He would become obsessed. I noticed when in places with lots of activity, he had no clue what to do and would become a ping pong ball bouncing from one thing to another, never really focusing on any one thing. And the list goes on. My list of concerns started to grow more and more. Some days I felt like a crazy person looking for issues and other days I just knew his speech delay had a deeper issue connected. I had that mommy gut feeling again, that something was off. And my focus was on autism.
A little more time passed and I eventually I had the courage to bring it up with the speech therapist. She told me to talk to our pediatrician to see what she thought and to get the next step. It took me a while to get the nerve to set up that appointment. Part of me knew and wanted answers, the other part of me was scared of what we would find out. Sadly, I again had little support and was very much pursuing this on my own. I finally made the appointment. It was for a couple weeks out, as it was going to be a longer appointment with our pediatrician. We went. And sadly I was heavily disappointed in how it went. She saw some of my concerns, but basically said that it was up to us if we wanted to pursue anything. Which I do understand, but I was hoping for some confirmation. I basically left the appointment frustrated that I did not have great support in my questions from our pediatrician. She had given me a sheet of paper with information that basically said to contact our insurance to see what coverage we had for behavioral/mental health. The wording made me uneasy. I thought we would just see another pediatrician or specialist similar to what we did with speech. But mental health? This was not what I was expecting. I did not want this following my son forever, or for him to be considered a mental case. What was this all about? I just wanted to have him evaluated for autism, not a mental disorder. How was autism a mental health issue? What did that mean? How was it not similar to just getting him therapy like he was for speech? My worries and lack of support made me step back for a bit. I had to take time to process what this all meant and really consider what pursuing my concerns would mean. Honestly, I had to get over the stigma and become okay with whatever I was to find out, if I pursued all this.
In the meantime, started to ask around on various mom groups to see what others on this same journey had dealt with. What options they took and what direction was best to really take. I finally was getting some support and realized I was right in pursuing this now. That this was about getting Marshmallow all the help he needs, during the most important years, and finding ways we can best support him. So I made the calls. Only to get nowhere once again and fell like I was banging my head into a wall over and over again. Our insurance had given me a list of 8 offices to call. I called each of them, all of them I reached only answering services and left messages. Eventually hearing back from each of them. Not one could help us. None of them took patients Marshmallows age or they were no longer taking new clients. I was at a dead end and extremely frustrated. I was overwhelmed with everything already and to get no answers and have no direction to go I was at a loss. I called back the insurance for more information and tell them I was getting nowhere. I pushed hard during the call for answers of where do we go from here? After being transferred a couple times, I was told they were going to connect me to an autism case worker. Awesome! Finally something. I left him a message. He got back to me and we talked for about an hour. He agreed that there was reason for concern and to pursue an evaluation. He gave me information on who he felt was the best person for us to contact.
I called the office and left a message. Then the waiting game. It took a while for her office to get back to me and get the evaluation appointment set up. But we got an appointment set up!! FINALLY a step in a direction. After I set up the appointment, the therapist called me to discuss Marshmallow. We talked for a bit and told me what she needed from me before the evaluation, what the evaluation would look like and tried to prepare me for what was ahead. So the evaluation was set for December, which was about 3 weeks away! I was excited to not be hit with a 6 month wait, which is something I was half expecting. We finally were on a path and heading in a direction. Where that path lead, was a whole new question.
Continue reading about our journey in Part Three.
http://smorepuma.blogspot.com/2015/02/real-life-part-three.html - part three
http://smorepuma.blogspot.com/2015/01/real-life-part-one.html - part one
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