Saturday, May 15, 2010

engaged in the world

We have had a great week on the autism front! HB 1311 passed the Missouri House and Senate and is heading to Governor Nixon's desk. The bill passing will make it possible for individual's covered by group plans who work for small to medium size companies that have plans managed by the state access up to $40,000 per year in therapies. The therapies include speech, occupational, physical and behavioral. The even better news is that this will affect our coverage and Rye will (effective January 2011) be covered for behavioral therapy.

Rye was observed for 3 hours by his implementer and Dr. Love from the Thompson Center last Friday. We will have another meeting with them in a week before we start the first of 10 intensive sessions with the implementer at the Thompson Center over the next 2 months. Rye will also FINALLY start speech therapy outside of school with the University of Missouri Language Lab on June 14th! We are very excited about finally making it to the top of the list. We have also been accepted into the two week intensive family program at Touch Point Autism Services. We will be taking a break from work and school for two weeks in August and the entire family will participate in 80 hours of training. We are excited to start services with Touch Point as Wyatt will be able to attend all of the Sibling Shops that they offer to help him to better understand why we are running all over the place taking his big brother to therapy so many times a week.

All of the above sounds so crazy but it all makes me feel so hopeful for continued progress. Since Rye has started having a para professional with him more at school and has been receiving speech therapy 3 days a week I can't even believe the difference in such a short amount of time. I really believe that he is engaging in our world more and spending a lot less time in his. We are feeling very hopeful and we are so proud of Rye and his progress.

Lots of new experiences on the horizon for the Shade family but we are eager to get started and to continue to see progress.

Wyatt will begin preschool in August after the two week training at Touch Point. He is so excited to be with as he calls it "the children my own age". Wyatt (and Rye for that matter) also continue to enjoy and love music. Dave Matthews Band continues to be at the top of Wyatt's list of favorites. I'm attaching a video of Wyatt singing You and Me Together by Dave Matthews and a video of Rye whistling a Snow White tune.

Saturday, April 24, 2010

Setting Sail...

We have been attempting to find a way to motivate the boys to remember the rules and expectations at home. These have been particularly difficult for Rye. I attended an informative session on Token Economy systems at the Autism Conference and I figured why not give it a try.

I learned that sticking to particular "liked" or "favorite" themes was the way to go so of course we decided to stick with the Pirate theme that Rye and Wyatt are obsessed with at the moment. It is pretty simple. I set up "Ship Rules" that the boys need to follow. Some are easy like take your shoes off when you come in the house, others are harder and geared toward Rye like don't bring sticks in the house (which he is wanting to do like crazy!).

Rye and Wyatt earn gold coins when we "catch them" being good and following the rules. When they earn 10 gold coins they get to pick a "prize" out of the treasure chest. They are loving it!!

I think it is also great that we are using this with Wyatt who I worry feels "left out" a lot.

Thursday, April 8, 2010

OMG I think I found the front of the tunnel- I just can't see if there is a light at the end!

Well we have had a "good" week in the Autism Services arena. Rye's evaluation was completed at school, it looks like he will have a paraprofessional with him at school as part of his IEP as well as additional therapies. We will meet in two weeks to look at and approve the IEP goals. He was accepted into the PDI (Plan for Developmental Intervention) at the Thompson Center for Autism and we have our first meeting with the consultant in a few weeks. We have signed up for adapted gymnastics and we will begin that on Friday. Rye and Wyatt continue to participate in swimming at Mizzou Rec 2 days a week. We are still on the wait list for speech services so that is a little discouraging but hopefully in the coming months.

The boys had a great Easter and Rye sneaked into the communion line at church before I could get to him, so I guess Rye also celebrated his first communion. Rye getting to do it of course upset Wyatt so he got to do it too!

Practical solutions that continue to work for our family:

Prediction of any changes as far in advance as possible and right before the change is scheduled to take place. Learning what triggers meltdowns is essential to successfully supporting Rye. We have to predict, talk about what the right thing to is, practice, then use in real life settings.

Remembering the difference between receptive and expressive language and that it isn't always that Rye is "not listening" but that he doesn't understand what we want. Clarify before getting upset about a child not doing something make sure and clarify that they know and understand what they should be doing.

Rye is a concrete thinker, he does interpret language very literally.

Language is hard so visual cues and prompts help Rye to understand.

Playing with Rye in "his world" is fun for him, it allows him to be in control and it is good for parents to "visit" the autism world every now and again. I feel like if I want Rye to understand and communicate with me and others the way I want him to then it is only fair that I try to see where he is coming from too.

Tuesday, March 16, 2010

please stand in the autism line over here

I mean seriously I don't get it! We wait two years and 3 "evaluations" to get a diagnosis. Now we wait months and months for formal therapy services. Not to mention that once we get to the front of the line we hear how wonderful all the services are and how much they are going to help BUT by the way your insurance doesn't cover any of them.

Sometimes I feel like Rye is slipping away into his own little world while we are waiting and waiting to get the help we need!

Sunday, March 7, 2010

eye contact is it important? do sensory diets help?

Posting two videos in which Rye has pretty good eye contact. After Rye engages in heavy work climbing over the monkey bars 4 times and running from one pirate ship to the next while sword fighting with me, followed by climbing the monkey bars one more time as directed by me as part of planned heavy work activities. The difference in eye contact is remarkably better. The final time back across the monkey bars he actually looks back at me to look at me!

This is the sensory/self-regulation piece of Autism that I do not understand. When Rye's body appears to be regulated he is better able to engage socially. How can we figure out what his body needs and when he needs it? Today Rye appeared to need lots of physical heavy work to appear regulated that is not always the case. Sometimes heavy work gets him too excited.

turn off the television

Rye loves loves loves to watch TV. So many children do. I do believe that the autism "world" that he frequently hides in is full of scripted scenes and pictures from movies that he has watched. His speech is scripted and his play reflects the movie world. It is another way that he chooses to not engage with others appropriately. TURN OFF the TV!! The less amount of time that children with autism spend unengaged, in my opinion, the worse they are. This is why ABA therapy works. Children with autism need to spend their time engaged in activities with others. I believe Rye has benefited from having a sibling close in age because he has had to engage and he likes to engage with Wyatt.

At my house we have fallen victim to the park them in front of the television more than we need to. Let's face it when you have a child who is capable of getting into anything but won't move a muscle if a movie is on it is just easier. I am making a packed with myself as of today unless it is a special event or do to illness Friday and Saturdays are the only days the boys will watch movies with a limit of 3 movies a week. That is still a lot but I am trying to be realistic.

Thursday, March 4, 2010

Attempting to Balance it all...

Today I am not finding the irony in the fact that my Senior Final Project for my degree was a presentation on Balancing Work and Family. Seriously I hate to tell you Marilyn Coleman (my professor) I don't know anything about balancing work and family. Glad I passed then I feel like I would surely fail now.

I never knew how many social roles I would take on as a "responsible" adult. Mother, Therapist, Daughter, Wife, Friend, Sister, and Aunt. I now feel like I need to add Mother of a child with Autism to the list of roles, I'm trying so desperately not to label my son yet I'm quickly labeling myself. Should it really make me different, does it make me different? Heck I don't know but it sure feels like I'm sinking into a hole of self-pity and I need to dig my way out and quick.

Solution-I am going to turn my newly found desire for blogging to continue to vent frustrations but also to blog about the positive things we are doing with Rye and Wyatt for that matter. Perhaps if I share the positive and somebody else can share in the positive it will be more than just the ranting and raving of a "Mother of a son with Autism".

One thing that has appeared to work for Rye is using social stories and pictures to explain, predict or remind of social "rules".

The following is an example of a Social Story we used with Rye when he was having difficulty with other children touching his Legos and difficulty with not wanting to take his Legos apart at the end of the day:

My name is Rye.

I am in Kindergarten at Cedar Ridge Elementary School. We are the Cardinals. I am in

Mrs. Allen’s Class. I also go to Adventure Club.

Sometimes I get mad and sad at school and at Adventure Club. about my Legos.

I don’t like it when people touch my Legos or take them apart. The Lego rules at school and at Adventure Club are that Legos are put away and taken apart at the end of the day every day. If I want to keep my Legos together for a long time I need to build a ship or machine at home. At homeI can keep my Legos together for a long time.

Tuesday, March 2, 2010

Where have I been for 6 months????

So I guess my blogging idea did not exactly pan out the first time around. I wrote my first official blog back in August when Ted Kennedy died. Ted has since been buried, I have read a good chunk of his Autobiography and a Republican has been elected to his Senate Seat!

Well the Shade family has been busy with Rye starting Kindergarten, both Mom & Dad working way too much, the Holidays, a ski vacation, 2 sessions of basketball and 4 sessions of swimming for Rye and Wyatt, Dad coaching basketball, a first time ever getaway to Chicago without kids for Mom & Dad and at the end of January Rye, my sweet little man was diagnosed with Autism.

There it is, to borrow from my husband, the elephant in the room. I can see it in my head rolling off of Dr. Kanne's tongue, "I think you are prepared for this but I believe it is Autistic Disorder". I smiled and nodded and stated "yes, I have thought that for some time". Which I had but finally hearing it out loud by an actual MD sounded a lot like a Judge's gavel hitting the block of wood on his desk.

So I guess where have I been for 6 months, I guess the Shade's have been crazy busy!! I am going to attempt to blog more frequently than every 6 months. Guess I'll just have to see if I can actually pull it off.