Happy New Year everyone! It’s another year. Another chance to keep working on our desires, imperfections, and life! 2010 took our family on a wild roller coaster ride searching for answers. Although I believe we are still on that ride, I can see the end in sight! We will start this year with several appointments with a Neurologist and other specialists seeking answers for both twins. I do believe that Zion scales closer to high-functioning/Asperger’s, while Ziah is just somewhere on the spectrum.
We tried Zion on prozac a few months back and noticed a small change. His spirits seemed to pick up and he wasn’t screaming and shouting at everyone. But that only lasted for a month. He was supposed to try the meds for a month, then go back off so we could see the difference. It was also discovered that paying $300 per month for a co-pay was not a feasible option in our budget. So we are back at square 1 on this issue. We will see what the Neruo-Pysch has to say when we say him this month.
Moving on… 2010 left me with some fears and doubts about what will happen to the twins in the future. However, I am optimistic! I have faith that God will help me through whatever struggle and challenge that we will face this year. I have also determined that I have to make some changes within myself so that I will be a greater use for my boys. I see their struggles on a daily basis. I see their frustrations. I am frustrated with them, and even at them! I want the best for them. I want answers. I want things to change. I dream of days that my twins were perfectly normal like other boys their age. Then I look at what other people go through. I read articles online, tweets, and face-book statues about people that are dealing with way worse situations.
Then I step back and thank God for what I have and I don’t have. I am blessed for the opportunity to be thankful for what I have. I am content. And I look forward to what its in store for 2011!
I started this blog to write about what goes on in my 3 z’s life; to blog about their funny moments, their sad moments, and the overall roller coaster of living with children on the spectrum (autism).
Unfortunately, I haven’t been able to blog on a daily or weekly basis as I have desired- welcome to the life of a busy mom! However, I am going to post often to keep (even) myself updated with what has been going on in the last few months. As mentioned in one of my earlier blogs, Ziah was diagnosed with Autism at the age of 3. At the time they (school) had considered Zion to be on the spectrum but wanted keep him under observation before making that decision. Around that same time, we made a move to Lansing (originally from Jackson). We continued with the IEP(s) set in place for both boys and they continued their education through the Early Childhood Development Program with Waverly School District. They were able to transition into mainstream Kindergarten with OT and Speech Services.
I’ve always thought Zion seemed to show more characteristics of being on the spectrum, than his brother. But as the saying goes, “You see a child with Autism, you see one child”- meaning it is a true spectrum with children ranging from low to high functioning.
Characteristics that I noticed frequently in Zion were and still are:
- very rigid and consistent schedules
- sensitive to loud noises
- hard time transitioning from one thing to another
- picky about certain foods and textures
- had to always knew what was next… pestered and bugged me until I would tell him
- always trying to figure things out- ex. wants to know how a clock works
- obsessed with video games- which is now being narrowed down to anything to do w/ Sonic, Mario and Luigi
- very aggressive, will flip out over small and minor incidents
- wants to follow every single rule
- worries and obsesses over death and dark things
- anxiety, anxiety, anxiety
- obsessed with youtube and the overall computer
- socially awkward
- self-esteem issues
- wired differently, processes things differently
- doesn’t understand most jokes
- thinks that multiple choice questions are out to get him
- getting angry, throwing mini-tantrums when things are not going the way he planned it go or changing the schedule at the last minute
- retains information and able to recite it back
Both boys have been developmentally delayed since 15 months. They both needed a lot of help in areas of speech and occupational therapy. I remember when they couldn’t talk and how Zion would lay on the floor kicking and screaming. I was besides myself! I cried, panicked, and felt lost. I didn’t know what he wanted. The way that his face would turn and his body would get stiff when he was having a tantrum scared the crap out of me! I thought in a way that my child was possessed.
Yes, I thought that… I knew something wasn’t right and we sought the help of Early On. Zion (although he is the youngest twin) did everything first. He walked at 7 months. And even during the process of not being able to speak, he was the first one that started making words. I strongly recommend for anyone that has a child that is nonverbal to start out with sign language. That was our lifesaver! The twins and I were taught signs to communicate simple stuff: eat, all done, more, drink, cup, ball, potty, etc until they were able to take those words and add sound to them. Once the sign language started and I was able to communicate with them the tantrums decreased.
Over time their language picked up and so did their motor skills. I am thankful for all the prevention services that we received, and forever grateful to the ISD team in Jackson for their dedication and support to my boys. They were the best! When we transitioned up to a new school in Lansing, they Jackson team came up to the IEP meeting to help me through the transition process and to let the Waverly team know all about the boys. Even to this day, they keep in contact and ask about the boys!
The twins are currently in the 2nd grade at Waverly. They are in separate classes, but have lost their IEP(s). (More on that story later) Zion is doing great in school and we have yet to notice a lot of issues with him in school. But school is also a consistent and structured environment which he thrives in. Zion was also lucky in landing the same teacher from First Grade (which he loves!). His teacher already knows him and is aware of his quirks and things that would raise his anxiety level. I was working outside of his classroom last week and someone in his class had a birthday. The children were going to sing happy birthday to the student and add the cha-cha-cha part. Zion and another boy didn’t want to sing the cha-cha-cha part because they both stated it was too loud. So the teacher asked the rest of the class could the promise to sing the cha-cha-cha part very quietly so it wouldn’t bother Zion. The class agreed. The teacher then asked Zion and the other boy would that be okay? They both agreed. The class sang it and stayed true to their word. And everyone was happy. It’s things like that I notice that she does to accommodate him, but still mainstreaming it to the rest of the class. Isn’t that great?!!
At the end of the last school year (08-09) , the IEP Team at Waverly (Colt) decided to close both of the twin’s IEP(s). I had a feeling they were leaning in that direction, especially for Zion. He hasn’t shown any signs of needing help in the classroom. Nor has he needed outside resources associated with his socialization and academic skills. He can read at grade level, but sometimes cannot always process what he reads. Also, I have noticed if you listen to Zion talks you can discern some (very) minor speech issues. Yet, on the other side of the coin Zion retains information like a library! There are still some OT concerns, and we’re still working on his writing skills.
Both twins have always been in a gray area. On the surface, they can appear as normal functioning children. But when you really get to know them and contrast and compare them to typical children, you will start to see their quirks and differences. As a parent and mother, I am pleased with seeing how far they have come. I am so glad that I pushed them and incorporated prevention services into their lives and education!
When the IEP meetings were over, I did not sign either IEP. I wanted to get more information before making my own decision concerning what would be the best course of action for my boys. At the meeting, the team acknowledged that Ziah is still on the spectrum, but not with enough characteristics to be classified under the education definition of autism. Apparently there is a big difference from a medical diagnosis and an educational diagnosis when it comes to Autism.
So, it was time for me, their mom and advocate to take action. Thus began my quest to seek out the right resources. Ask the right questions. But above all not settle for any old answers, but in the end, get the additional help for my twins!
I started calling places and talking to people, in search of resources. Some psychologists and neurologists offices that I called in order to get another assessment would not take my insurance. And for those that did, I had to pay an outrageous copay! I told myself it would be worth it, but that would be my last option. Eventually, I was able to find get them into the MSU Psychology Clinic. The appointment and assessments didn’t happen until mid-summer. Their assessments matched what I thought, but I still needed more clarification. Their assessment on Ziah was mild-to high functioning on the spectrum, or medically labeling it as PDD-NOS. With Zion, their assessment was to consider PDD-NOS, but labeled him with an Anxiety/Depression Disorder with Sensory issues. I was a little stunned that a child could have a depression disorder at such a young age. It was recommended that Zion start on an anti-anxiety med, such as Prozac.
At that point in the game, I was against my child taking meds and wanted to keep seeking for answers and continue with the play therapy. We were able to get another valuable resource by a mom in my autism support group. She referred me to a Pediatric Neurologist at Wayne State Hospital. This Dr. was able to get us in within two weeks of contacting him for an initial assessment. At the appointment, we talked a lot about my observations with the boys and the last evaluation completed by the school district. Immediately by reading the scores, the Dr. stated that both boys were on the spectrum to be considered as high-functioning Autism. He set up appointments for their psych assessments and brain scans, then sent me off with a prescription for Zion.
I felt some relief. I felt that I was getting some of the answers that my gut was telling me all along. I felt some satisfaction in knowing I had not failed as a parent and would continue to take any necessary steps to get the twins the right help and prevention services. This will be continued……