Anthony's Assessments

During the time we had been working with Daniel to make sure he was getting what he needed, we started to notice Anthony seemed to stop advancing as well as he had been. We had been working with him ourselves to get him to learn how to count, say the alphabet, know animals and sounds, colors and shapes. But even when Daniel's teacher would come into our home, she would mention that we needed to keep an eye on Anthony. (We are so grateful she did too). Anthony had been learning words, but we really hadn't noticed that he wasn't "linking words".

We also noticed that Anthony had not been using signs he had learned while he and Daniel would watch Signing Time© DVDs. We also noticed that he wasn't starting to play appropriately with toys. So, we tried to schedule an appointment with our regional center for Anthony. The regional center wouldn't see him until he was assessed by the school (since he was almost three before he presented enough issues to be evaluated). Once he was going to turn three, we were able to set up an appointment with the speech teacher at what would be our school. Since our major issue was that he wasn't "chaining words", we had to start with that. The speech teacher did a basic evaluation and noted that we would have a complete assessment for an iep.

After the assessment was the meeting... We found out that Anthony was behind in much more than his speech. We didn't realize how far behind he was. Though we shouldn't have, we compared where he was to where Daniel was. It was our only example at the time. We were shocked - to say the least. We had noticed a few deficits, but not enough to think he had any major issues. Once we had the assessment and IEP, we were able to enroll him in the same sdc class Daniel was in. We also got the word that the regional center would evaluate him now. They scheduled an appointment at an off site facility. When we got there, the psychologist tried to evaluate him, but he was very uncooperative. After about 20 minutes, several questions and Anthony's non compliance, we were told that he would need to come back another day, to see if he could be coaxed into complying.

About 2 weeks later we got a call from our regional center worker that Anthony had been taken on as a client. We were completely confused, but grateful that they took him on as a client because it would mean that services would be available for him. But then, we were told the reason for him being taken on was because he was mentally delayed. He had an "intellectual disability". We were referred to another psychologist who could help determine "the level" of his delay. After seeing this psychologist, we were informed that he had a "global delay", which basically meant that he was behind in every category. This all basically meant that Anthony, while a client of the center, would not receive any services - they didn't believe that he was capable of learning?!!

Once we had "jumped through the hoops" he began the SDC with Daniel. Initially he did well, in the class and speech. He even seemed to be trying to socialize, or so we thought.

ABA (Applied Behavior Analysis)

While we were going through the process of beginning school with Daniel, we had a home visit / assessment from Holdsambeck Associates - who would turn out to be one of our favorite and best resources. They came in and observed Daniel while he played, watched how he interacted with his twin - Anthony and us. They asked questions, and interacted with Daniel. Soon after we had a meeting and went over all things that had been observed, and how the information gathered would help to establish a beginning point for ABA services. A binder was put together for his programs, information to be gathered in, to show progress.

So, with ABA beginning, we got his own little table to work at, blocks, puzzles and other items he would need. The company would provide his programs. Initially there would be two sessions a day - each 1-1/2 hours each. They would be every day Monday thru Friday after his SDC (which was 3 hours long the first year), and a session on Saturdays. A different BI (Behavior Instructor) would work one on one with Daniel each session. Because he wouldn't stay focused and tended to become increasing agitated, we could not have any men on his team. All of his instructors were women (I think this kept his attention for many reasons, but whatever the reason, it was it worked). He would have several programs to begin with. The very basics were covered at first, putting one item with another, getting him to imitate words, actions and eye contact. From the beginning Daniel was very compliant, they would work for so long then have a few minutes break, with a 10 minute break at the half way point. For the first couple of weeks - whenever an instructor would show up at the door, Daniel would run behind me and start crying, but he would comply with his instructions. It broke my heart, I wanted to cry every time he did. I knew I couldn't do anything. He had to go through this if he was ever to be part of our world and not continue drifting away.

After a while Anthony would try to be included...

We began ABA incorporating ASL (American Sign Language) for anything we would request him to say. We would tell him to "say moon" and sign moon at the same time. Getting him to respond to requests seemed to take so long. He would be compliant and sit down, allow the BI's to make him do things "hand over hand", however, he seemed to be saying... "I'll talk only when I feel like it, and you can't make me." We would also use the sign language for pictures, using it as a visual prompt when he wouldn't comply with just seeing the picture. After a while, we all learned together the limitations of ABA for Daniel. For example, he would completely shut down after 5 o'clock, he wouldn't respond on Saturday's. So, once we had a routine down, we stopped working after 5 and on Saturdays. Then the sessions became 2 hours a piece.

Once the boys turned 3 and we had Daniel on track, we had Anthony assessed with the local school system. It had been a long road getting Anthony what he needed because he seemed to simply be "delayed". Though we knew more was going on, and since his delays didn't show up as much until later, we kept being directed to have him assessed with the school. However, they wouldn't assess him until he was 3, and since he was going to be three, the regional center would not see him until he was assessed by the school.

Daniel's Next Step... IEP and Special Day Class

Shortly after Daniel was "officially" diagnosed with autism, he (we) were set up with Holdsambeck Associates to be assessed for ABA (Applied Behavior Analysis) services. The next step with school, since Daniel was almost 3, was to have an "official" school assessment.  We scheduled the the first "official" IEP (Individualized Education Program) for Daniel with the school, this will be updated annually.

The assessment consisted of the special education teacher, school nurse, school psychologist, speech teacher, the school district's special education coordinator, and of course - us.. They would test him for fine and gross motor skills, general skill level, basic hearing and vision, education level. All these things would be measured against certain criteria that would show what age level he appeared to be at vs. how old he really was. Daniel showed several delays, the gap - which had grown since his first assessment with the regional center. This was very concerning to us, however, we had options on where he could be placed. Our options included an SDC (Special Day Class - Preschool) or a PALS (Playing to Learn and Socialize) program.

Because Daniel had retained what we thought were social skills, we all decided together as a group to place him in the SDC (it was, of course ultimately our decision). The best part was the SDC was a little less structured, and if it worked, he would not have to be in a structured program at school, and then at home as well.

Daniel's Diagnosis

Once "school" began again, Daniel seemed to be doing fairly well... until around his 2nd birthday. ROADBLOCK! He regressed. Or, he seemed to lose his words, colors, shapes, numbers, counting... Gone! He didn't lose milestones, he still walked for instance, but his motors skills didn't seem to be improving as much as they had before. We had noticed little things before, we couldn't quite put our finger on it for sure, but we knew there was more going on than speech and developmental delay. We had suspected autism before now, but every one we talked to said he was too social, too loving... how wrong "stereo types" can be.

He had already been doing the spinning, toe walking, flapping his hands, lining up cars and watching the wheels as he pushed them off the shelf. He constantly looked out of the side of his eyes, or upside down, etc. They just became a lot more intense and a lot more prevalent. Everyone would tell us tell us that we didn't want him labeled, that he was inconsistent in his behavior. This would become a regular description of both of our boys: consistently inconsistent.

Finally, we got to the M-CHAT (Modified Checklist for Autism in Toddlers) and of course he passed/failed (however you may choose to word it) he had "autistic tendencies"... This brought us to the next phase, he would need to be reassessed by the Regional Center again. This time directly by the psychologist. As many of you may have already found out, this is just the beginning.

Once Daniel had his appointment with the psychologist at the Regional Center, he was automatically diagnosed with autism, and also mild mental delay. (They had to do a dual diagnosis, I was told, in order to be able to take him on as a client. Anyone with autism received this diagnosis.) Because of the "mental delay" we were referred to another psychologist to see if we could figure out the depth of the delay. We were grateful, because we'd also wanted a second opinion, to make sure we weren't missing anything. The second psychologist also diagnosed autism.

au•tism [aw-tiz-uhm] (ô'tĭz'əm)
A developmental disorder characterized by severe deficits in social interaction and communication and by abnormal behavior patterns, such as the repetition of specific movements or a tendency to focus on certain objects. Autism is evident in the first years of life. Its cause is unknown.

Now he would qualify for ABA (Applied Behavior Analysis). This would help him learn to redirect his focus and begin to tap into the things he had "lost". It will also help him learn to communicate in a world that won't learn how to communicate with him. We knew all of his knowledge was still there, we just had to help him learn to access it again. This was the beginning of our journey with Daniel and autism.

Learning the Initial System...

Once we had our referral for Daniel with the Regional Center, we would have three appointments there. The first was a "meeting" with a worker to ask detailed questions about what was going on. Typical questions that we had answered a hundred times (or seemed like) and would answer at least as many more. When had he learned to walk, had he rolled over for the first time, when did he crawl, etc. Was he talking? How many words? Etc. Once we finished this "interview" they would get back to us within 60 days.

Finally, after what seemed like forever, we got a call to schedule an assessment. When the day came, we took Daniel to the Regional Center where a group of professionals would figure out what they suspected to be the problem. A nurse, a psychologist, a speech therapist, I believe there were one or two more, but at this point I really can't remember. They would try to get him to mimic words, play with toys that would show fine motor and gross motor skills. They pretty much put him through his paces. All the time asking more questions about his development to date.

A few weeks later, Daniel was "taken on" as a client. His diagnosis at the time was physical and mental delay. He would be referred to a a program in our school district for children with special needs, under three years old. He would go once a week to see a speech therapist who began working with PRT (Pivotal Response Therapy). This is for children with a little speech and is designed to bring more speech out. The second part of this therapy was to bring a "home" teacher in to "play" (work) to develop and assess his progress. She was wonderful, she also allowed Anthony to "play" with Daniel, and included him when he was curious.

Everything seemed to be going well for those first few months. After all he started late that first school year, and would take a break for a few weeks of "summer".

The Crucial 15th Month (For Us)

By November 1st, we were ready to finalize our adoption. Though the "episodes" were becoming more frequent, and the boys had been subjected to alcohol and drugs in the womb... could that be why Daniel was going through what he was? With no answers, we moved forward, would never have changed our course. The boys meant (and mean) everything to us.

We had a wonderful joint ceremony for all the new CPS adoptive parents at that time - it was a wonderful event. Instead of a stuffy courtroom, once a year - this program, "Adoptions in the Park" gave those finalizing adoptions the chance to have a wonderfully personal gathering. Finalizing in front of a judge in an outdoor venue.

At the next well baby/care checkup, the 15-month questionnaire was to be filled out. Especially if there were concerns. CONCERNS?! We'd been asking questions and bringing up concerns for almost a year... Anyway, with my sister's help (since my husband was unable to make the appointment that day), I realized that there was a lot more going on than I even realized. For Daniel the questions:

Is your baby saying at least ## words? Yes No
Is your baby gesturing for items they want? Yes No
Is your baby walking? No

Well there were too many more "wrong" answers, so, now we had the doctor's acknowledgement that there was indeed... Something going on.
???!!! Really? Ya think ???!!!
While Anthony's questionnaire was better, he had started walking at 14 months, it was still showing something a little off.
The great news was that on the 15th month birthday - Daniel began to walk. Also, not too long after, we would have our first appointment with our local Regional Center. A place that helps provide services to children will varying degrees of "issues'. Our local center focuses on Autism, mental and other issues.

The First Nine Months (4)

We knew there was a definite chance for problems due to the birth mom's issues, but everything seemed to be going well. We had the wonderful blessing to be around our nieces early in their lives (up to today). The boys were a little delayed on some of their milestones, but they still were reaching them. We were told initially, "Oh, they're boys. Boys develop slower than girls. Don't worry." They were saying "momma" and "dadda". They were tracking us with their eyes - they had beautiful eye contact for the most part. At least it seemed like they did.

Then by the time the boys were around 9 months we noticed that Daniel started having these "episodes". He would kick, hit, pull hair, scream - you name it. It was like a tantrum, but different. Nothing except holding him tight to me in, essentially a bear hug would calm him. Then, once the "episode" was over, he would be exhausted. Sometimes these would last 2 minutes, other times they could last up to fifteen. It completely took us by surprise, and we had no idea what was going on, and the doctors were no help either.

By the time Daniel was around nine months old, we noticed that his eye contact seemed to slightly diminish. We just figured he was noticing other things more, more curious about other sights. We didn't realize that he wasn't picking up things that Anthony was. Like, Daniel seemed to be taking forever to roll over, to sit up, to pull himself up. He and Anthony had interacted like twins up until this point. But, that even seemed to be happening a little less.

But again, the doctor stated that it was just boys... developing slower.