Isaac and Autism - 1 year update

Isaac's famous words on the way home from his evaluations last December when I was stressed to the max. I made this sign as a constant reminder of Isaac's thoughts on his life!

Wow it is hard to believe that a whole year has gone by since Isaac was diagnosed. I'm trying to share what some of this journey has been like for us, and also for Isaac.

If I had to sum up the whole year in one word it would be "progress". Not necessarily speedy progress, and not necessarily progress that would show that Isaac is like an average typical boy, that is almost 6, but definitely progress from where he was a year ago. I think, for the most part, I'm getting better at not comparing him, but reflecting on how far he's come instead.

This little boy of ours has been working so hard. All I have to do is remember how frustrated both him and I were at certain points a year ago to see the growth. True, some of it just may be him maturing, but I think we can also give credit to his teachers and his service provider for helping him with some of the challenges we had been dealing with.

It was pretty awesome to sit at his IPP meeting at the end of the school year and hear them reading off that he had achieved or was progressing on every single goal that was set for him. I could see on their faces how proud they were of him which made me super excited.
Hearing feedback from family over the last year that don't see him as frequently as they used to, was great too.

January - I signed Isaac up for piano lessons since he was always tinkering around on the keyboard. I had read so much about autism kids being brilliant at certain things that right away I thought his passion might be music. Maybe it still will be but after the first lesson watching him run around the instructors house more then he touched the piano I thought maybe it's a bit soon yet. Along with a piano lesson the parent would need to be involved somewhat with them practicing and learning and honestly I decided the timing wasn't great and with everything else we would need to be working on I wasn't up for the challenge at the time. So after one lesson we quit. In Jan. I also was connected to two mom's who also have  autistic sons and had each of them over to share their stories with me and to share resources. I attended a workshop at Isaac's school on sensory processing one evening. I also created a huge binder this month and started researching service providers so that once we hopefully were approved by FSCD we could choose a provider that would work well with our family. This researching was a full time job. I was setting up meetings to meet providers at their locations or in our home and learning what their philosophy was on helping autistic kids. Lots of phone calls and taking notes. I did not know when he was diagnosed, that we would have to go on 6-12 month waiting lists before we could even get started with some of these providers. I was naive and assumed I got to pick the cream of the crop and get started asap. It was soon recommended to me that I get on all the waiting lists and hope the provider I would choose would be able to start soon.

February - This month I had a very important meeting with FSCD. I was so nervous about this meeting because they come and meet with you and assess how severe your situation is, and how much help you need as a family. They determine if you qualify for funding for services and respite help. I had heard so much in the few months prior, that these visits were brutal. That you had to fight tooth and nail to get any kind of help and that these people weren't very willing to help you. After hearing all this Ken and I prepared for this meeting listing all the positives and challenges we were having. We had a few meetings, the two of us, preparing for it. I was even told not to clean my house and to not let my kids nap that day so they would be interrupting and misbehaving. Can you believe that? I guess you are supposed to look like you are in a desperate state. Ken and I didn't agree with this and took the honest approach. And what do you know...the meeting was wonderful. The lady ended up being from PEI originally so we connected right away. Her grandfather was one of the father's of confederation in PEI. I don't know exactly how we found all this out but her and Ken chatted for a bit and she discovered he had a social studies major. Anyways we did qualify for funding after our very pleasant visit. In Feb. I also was invited by Isaac's school to attend a 8 -week Hanen workshop called Talkability with other parents of autistic kids. I had taken a hanen workshop before for Isaac's speech delay and had found it so helpful so I was excited to take another one of their workshops. I met lots of other parents in this group, most who's kids had been diagnosed a year or two earlier. It was very informative but  a bit overwhelming hearing their real life stories. This was when it became very apparent how broad the spectrum is. We also had a few home visits in February from Isaac's occupational therapist, my course instructor and his Speech language pathologist.

Some of Isaac's artwork. His fine motor skills are very delayed and he has a hard time grasping crayons, markers and pencils properly.

Beading is one thing he will tackle from time to time. It is way harder for him then Miss Emma. Great for fine motor practice.

 

March - In March I met with two lovely ladies from Innovative. This ended up being the service provider we chose and they would start working with Isaac in May, which sounded much better then waiting a whole year. I continued with my Talkability course. I also attended a workshop at Isaac's school on fine motor skills hosted by an occupational therapist. Isaac had his first eye appointment which I was nervous about but he did remarkably well. I think by this point in his life he is getting pretty used to lots of doctors and assessments. I attended a 1 day autism conference put on by students at the U of A with my two new friends who also had autistic sons. The conference was a bit over my head but it was good to go to. Isaac also had his first dentist appointment which also went super. In qualifying for services we also qualified for respite ( a paid for babysitter that we could choose) with a set amount of hours available to us over the contract year. A few girls were recommended to us so we set a meeting up and met with them and they were willing to help us out. This service is provided so that husbands and wives  can have a break from the demands of having a child with a disability. Thankfully these girls were more then willing to babysit all of our kids so we can have a few date nights a month. We lined up the two of them in the hopes that at least one of them would be available when we would need someone.

April- This month I was invited for coffee with 4-5 other mom's in our church community who have children with special needs. We shared our stories. What a blessing and comfort to not be alone in this journey. This was our first get together but throughout the year we met a few more times and formed a board and have started a special needs support group in our church that meets once a month.
Innovative also offered Triple P a 4-5 week course on positive parenting with a focus on parents of autistic kids. Ken and I attended this course together once a week in the evenings. It was great to be there together and to set goals and work on them together. It is so important to be consistent and on board with each other in how we teach and discipline. A few other sets of parents attended this course too so it was good to share stories and encourage one another. One thing I was discovering throughout all these interactions with other parents is how thankful we should be that Isaac appears to be on the higher functioning level of the spectrum.

 We all wore blue on Autism awareness Day this month. Lots of our friends and family did as well.

May - This month we started our 2 times a week visits with Innovative. They would come for 2 hours on Mondays and Wednesdays. It was rather stressful for all of us in our family. They would come at 3:30-5:30 because this was a troubling time of day for Isaac. These two hours are a time of chaos in most families...kids getting home from school, mom trying to make supper, dad arriving home from work. Isaac was really acting out and very over stimulated and none of us really could take the time at this point of the day to focus on him to help him work through this. They came at this time for this very reason. To brainstorm ideas on how this time of the day could run smoother. I don't think we 100% solved this problem period but it is much better now then it was then. Visuals helped, including Isaac more in the supper routine helped by giving him a chore and also by giving him a choice of an activity to do after supper chores helped as well ( a bikeride, a book read to him, jumping on the tramp with a person of his choice). We also through soccer into the mix this month. Practices weds. nights and games Saturday mornings. All the boys played. This was Isaac's first experience playing a team sport. He seemed into it. Burned energy running. I'm not so sure how much of the game he understood but he did kick the ball a few times. And he loved his number 8 jersey. Isaac also started attending a social group on Monday afternoon's through innovative. They would work on a specific skill with Isaac and a few other autistic kids for an hour and a half. It was a bit hard for me to drop him off for this group with a bunch of strangers but we both survived it. He was pretty brave.

June - In June we had home visits from my talkability course instructor, the innovative Speech language pathologist and his regular worker started coming Mondays and Wednesdays again.

July - I helped out with VBS at our church. The 4 boys were split into groups and it was every morning for a week. I signed Isaac up and was anxious to see how he would make out. I was a bit overwhelmed with his behavior. He knew I was helping in the kitchen and would often bolt the group to find me. He had a hard time focusing on tasks but overall I think he did enjoy the experience. The leaders were super helpful in taking him outside on his own to burn some energy, or asked how they could help out. I have to admit I was on pins and needles a lot that week not knowing if he was going to have a meltdown, when I'd make him go back to his group. I sometimes tried to hide from him. I laugh about it now but I seriously did hide.

The rest of July and August we took off and it was delightful. I have learned that autistic kids thrive on routine and structure but I think Isaac thrives on love and affection. Having both Ken and I around and the family doing fun things together was so good for him and for all of us. We all needed the break. Isaac learned how to ride his bike without training wheels. This was so exciting. The sheer joy of it all was written all over his face. I feel like this was a turning point of him realizing that sometimes the things we encouraged him to try were worth the effort because they actually were a lot of fun. When his service provider came back at the end of August she said Isaac was a totally different kid. So relaxed. It is such a bonus that Ken is off most of the summer. It is a huge blessing to all of us.

Isaac with the red bike tires.

September - This was a transition month for everyone, back to school and we started swimming lessons. Isaac was still attending Mayfield and was in a modified Kindergarten class. He goes 4 3/4 days. Tuesday to Friday, bus pick up at 7:15 and drop off at 2:45. Basically full days. Mondays were off but we would have his service provider come those mornings for 2 hours. It was so different for me having Isaac gone so much. Just me and Emma. When I would get Isaac off the bus every school day he would be asleep. He's working so hard. All 4 boys had swimming lessons on Tuesdays until end of October. I registered Isaac in 4-5 advanced. His first swimming lesson. I had the option of putting him in a special needs class but opted out and thought lets see how he does in a regular class. His instructor ended up evaluating him at a 4-5 beginning level and he still didn't pass but he did quite well in my mind. He stayed with the group and enjoyed going each week. Innovative loaned us some ear phones to help him with the sensory overload and he seemed to not mind wearing them. Focusing on the teacher was a bit challenging but he still learned a lot.

Isaac is on the far end with the red ear protection on.

October - Isaac started an 8 week social group through Innovative. Every Monday morning Emma, Isaac and I would head to Innovative's office for a morning session. This replaced his home visits for the last two months. He was in a class with 3 other autistic boys and a few instructors. Each week they had a lesson plan they worked through with the group. The focus was on social skills. Some of the headings of his sessions were: expected and unexpected behaviors, Being part of the group, connecting how one's behavior impacts the feelings of those around them, thinking with your eyes, thinking thoughts and feeling feelings, and whole body listening. Emma had some of the kids siblings to play with in one room while us parents had a session on what the kids would be learning in their room. It was great connecting with other parents and sharing ideas. Isaac made some buddies in this group and all of us looked forward to it each week. Papa even attended a session with us when he was here in December.

This elevator is in the building where we go to social group. As a treat at the end of each session we would ride the elevator just for fun! He doesn't ever let me forget.

November - wasn't too eventful. By the end of the year we had settled into somewhat of a routine. This month social group on Mondays, regular school with field trips once and awhile. My special needs support group monthly meetings. Things are great.

Isaac's field trip to Save on Foods with a nutritionist. Emma gets to tag along on all these cool things.

December - Nana and Papa came for 10 days, we had Christmas concerts, school ended for the break. Pretty normal stuff for the average family. Lots of fun over the holidays!



This sums up 2015 with Isaac and this journey we are on with him learning about autism. Thanks for everyone's prayers and support in 2015!