MJs IEP meeting was just this past week! No matter how many of these I attend, It’s still very difficult to hear about all of your child’s “areas of need,” before they get to his progress. It is still difficult for us to sit and listen to it all. Earlier last month I received a draft of the IEP that I immediately took to work to have a friend look at for me. She is an ESE specialist and is familiar with what happens in high school. As I write this, I honestly cannot believe that MJ will be going to high school next year! It seems as though I was just writing the same thing about him going to middle school! I have the same emotions. I’m nervous, excited, scared, and at the same time hopeful! MJ did so well in middle school and I’m anticipating the same for high school. I had to fill out a school choice form for him to be able to attend the high school that we wanted. I still have to wait another month to find out if it’s approved. I know two other autism moms that have their children at the school and they both love the program and speak highly of the teachers so I’m really praying that we get that school. One concern for me during the IEP meeting was that they wanted to decrease his speech therapy from 90 minutes to 60 minutes. Excuseeeee me! I immediately asked why they wanted to do that and no one could answer me! His speech therapist wasn’t even at the meeting! She had a fill-in instead and this person had never seen MJ for a therapy session. I looked at everyone as though they had five heads and told them, “absolutely not!” I had to keep my composure to make sure that “Nicky from the 305” did not make an appearance! I told them to change it back to 90 minutes, as speech is one of the main things that we know he needs to work on. He still has much better receptive language than expressive language. I’m still baffled by that horrible suggestion. One positive take away was how much better his hand writing has gotten since entering middle school. The occupational therapist was able to show me something that he recently wrote. You can see it below. All in all, the meeting was productive. Once I get approval on the high school, we will all be visiting there to tour the school and meet the teachers. But for now I have to get my mind and spirit ready for the fact that it’shappening…I will soon have a high schooler.
My daughter’s birthday is coming up. This year she wanted to do something different so I mentioned Disney and of course she was totally excited about it! I immediately went online to try and find what weekend would have less crowds. My daughter’s birthday is Presidents Day weekend and I knew that would be a nightmare for MJ ( heck, for all of us)! After researching I found that February 8th-11th is a non peak weekend and therefore would work well for us. When we do visit Orlando, we only focus on one theme park. There is no park hopping over here. MJ would never be able to tolerate that. My daughter decided on Animal Kingdom this time. I was pleased because MJ loves animals and I knew he’d enjoy it too. We always pack the essentials: gold fish, Caprisun, apples, headphones, portable DVD player and his tablet. Im so relieved that he does well on road trips. He is relaxed and mostly looks out of the window while occasionally asking, “are we there yet?” When we first get to the hotel we settle in and then walk around and check out the resort. Then it’s time to eat! They always have his favorite (nuggets and fries). Next up is always the arcade. It’s so nice to see the kids playing together and not getting on each other’s nerves (yes Jesus)! The next day is our theme park day. I prepared MJ by showing him videos of Animal Kingdom with the attractions and rides. We also reviewed a map of the park and the hotel we’d be staying in. When we first got there we immediately went to guest services for their “disability access service” which allows MJ to go on attractions a little faster, in order to avoid meltdowns. After that it was time to explore the park! MJ was a bit hesitant when we got there. He walked slowly, with his head down, and looked aggravated. Hubby had to hang back with him for a few minutes while I went ahead with Morgan. She was thrilled with all there was to see and I could tell that it bothered her that MJ was less enthused (insert prayer here). It took about 30 minutes for him to ” warm up.” We had fun on Kilimanjaro’s Safari, and on rides in the Dinosaur area. The Festival of the Lion King show was great! Unfortunately MJ slept through the entire show which was really a bummer because I knew he’d enjoy that (One of his favorite TV shows right now is The Lion Guard). Six hours flew by and I could tell by the look on his face that it was time to go. We are always sure not to over do it with him. After Animal Kingdom we had dinner then the kids enjoyed the resort pool for the rest of the evening and the next day. We had a wonderful time and though this trip was really all about Morgan, we can never really go anywhere without planning for MJ.
The only picture of All of us together that we took:
During the last few months it has been increasingly difficult to get MJ to want to go to church. If I’m honest, it’s never been a completely smooth experience but lately he yells, and has a huge attitude about it. So I decided to have him stay with a family member while I went with my daughter. I just have to admit how awesome it was to not have to worry about MJ’s behavior (loud outbursts) while there! I was able to completely focus, participate and listen to the pastor!!! It was honestly one of the best Sundays I’d had in a while. This is not to say that I’ll stop trying with MJ, but I will definitely do this more often.
We have been working on MJ independently making his own meals. Obviously, we don’t want to overwhelm him so we have him making simple things. Our ultimate goal is that one day he can sustain himself without our assistance. Recently MJ came to me and said, “What’s for lunch mommy?” I was in the middle of doing something and said, “Do you wanna have waffles and fruit?” A few minutes later he came and showed me his plate of toasted Eggo waffles with syrup (*mind blown* 😮). I was stunned! He usually gets irritated when I make him do it himself, and yells, “It’s your turn to make it mommy, ” or some other inappropriate statement lol. I have always observed him while he made it so this truly shocked me! I told him that I was very proud of him for doing it by himself. Today, he independently made a peanut butter and jelly sandwich. Of course, it took him about 20 minutes to do this but he did it by himself. We are so grateful for this progress. Who knows…next time it may be a ribeye steak well done 😏.
Merry Christmas and Happy Holidays from our home to yours!
Some weeks back I wrote about visiting a new facility that MJ can go to for various activities. In order for him to be able to participate, we had to do a parent tour, 2 intake sessions, one with MJ and one without, and fill out lots of paperwork. Last week, I was finally able to have him participate in a Social Games class. I was a little nervous when I was taking him because I didn’t fully know what to expect and I wanted him to be in a good mood for the first session. I prepared him for it by explaining that he would be meeting new people, playing games, and having fun. He had no idea that therapy would be going on while he plays. Being the overprotective mom that I am (sorry, not sorry), I asked if I could observe just for a few minutes to make sure that he was okay (in my mind I still see him as the 5-year old that used to run into oncoming traffic). They nicely told me that I could do that towards the end of the session. While waiting, a fellow autism mom showed me the parent observation room! I ran for the chance to see what he was doing. All I saw was pure JOY on MJ’s face. He was so happy playing the game. I was relieved that he wasn’t just fine, he was laughing and being silly. When the session was over he was so talkative! Telling me that he played games, had fun and “I want to come back next week!”
Just yesterday I took Morgan to a sibling support group. There were about 15 kids there. They talked, played games, made hot chocolate, had snacks, did arts and crafts, and were sent home with a bag full of goodies. I cannot begin to express how thrilled and thankful I am for this new program. They not only serve the child with special needs, they serve the entire family.
When raising a child with special needs, it’s very easy to constantly compare your child to other children. In doing so, you soon realize that it does nothing but depress you and allow you to focus on all of the things that your child is not doing. When MJ was about 4 years old, I decided that I would not do that any longer and I would focus on any and all accomplishments MJ had.
We celebrated when he learned the names of objects around the house.
We celebrated when he used his toothbrush for the first time.
We celebrated when he took a bath without assistance and then eventually learned to shower.
We celebrated when he learned to safely use the hot versus cold water.
We celebrated when he learned to dress himself.
We celebrated when he went to school and didn’t try to hide in the classroom closet.
We celebrated when he started speaking in 2 word phrases (“juice please”).
We celebrated when he was able to sit at a restaurant for 10 minutes without having a meltdown.
We celebrated when he went to a store and helped with selecting grocery items instead of running through the store.
We celebrated when he stopped running into the street as soon as the front door was opened.
We celebrated when he learned his address and phone number.
We celebrated whenever he tried a new food.
And this continues today…
Don’t compare your children to anyone else. They are perfectly unique and a one-of-a-kind design. Celebrate their individuality and their successes no matter how small you think they may be- For we know those victories really aren’t small at all.