Evaluations.
When Simon was first diagnosed with autism back in January 2005, one of the recommendations from the team at CDRC was to return in a year or two for a re-evaluation. Yesterday was the day.
This visit played out much like before. Simon met with a speech therapist, an occupational therapist, a developmental pediatrician, and a child psychologist (this is an all day 8am-5pm deal). One of the issues that came up in 2005 was a lack of cooperation to complete the testing - we all hoped that they would be able to get farther this time (for a more accurate diagnosis). In the end it was a bit better, but there were still quite a few things he simply refused to do during the testing (he would become hyper-focused on some other thing in the room ie: toy and continue to ask for that rather than respond to the adult asking the questions/trying to get him to engage).
There were also things that he simply didn't understand such as the concept of pretend play with small people or being able to look at a book presented to him and tell the story to the speech therapist based on the pictures.
We wanted this evaluation to be a check-in and a check-up. In some ways it is a second opinion on what we already know from the Early Childhood Special Education/Early Intervention specialists. His issues continue to be related to speech, behavior, muscle tone, and socialization/social skills.
As parents, Chris and I felt we also needed a check-in. Along with Simon being re-evaluated, we needed to evaluate ourselves. How are we doing? Are we doing as much as we can? What new strategies could we employ? We needed the opportunity to bounce ideas off the specialists and get more information and suggestions on how to address certain areas.
One of our main concerns all along has been nutrition. We have a super picky little guy when it comes to food and when you get down to the heart of it, some of it probably has to do with the fact that we have not been consistent in our approach to getting him to try new foods. We get tired. We get busy. We get off course. We do things that are simply easier on us (chicken nuggets again tonight, sure, sounds good to me buddy).
Some of our fears related to his growth (based on his nutrition) were alleviated by the developmental pediatrician who tested his fat content + height + weight and was able to show us on the growth chart that he is right in the middle of where he should be. A little sigh of relief there, but also a reminder again to us to get back on track. One of the things we will be doing in the coming months (as suggested by the developmental pediatrician) is visit with a nutritionist in Portland in conjunction with CDRC/OHSU. It will be another step in obtaining knowledge and strategies of different ways we can work with him.
Other goals we will be working on with Simon:
- Organizing some play dates to work on social skills + turn taking (Meg are you interested?).
- Behavior coaching/behavior management especially related to his desire to run away (which to him is simply a game of chase) - would love to find someone to work with us one on one - any one have any info on this sort of thing?
- Moving his language skills beyond simple identification to a conceptual level (looking at a picture book and being able to identify feelings) + working on reciprocity in conversation (keeping the conversation going beyond one statement question from me and one response from him). One idea the child psychologist suggested was to have a chat each night at the dinner table about each of our favorite things from the day and have that be a jumping off point for more discussion. Simon will need some coaching on this to get things going (similar to the picture story/schedule he brings home each day outlining his activities - we will probably bring this to the table to begin) but it is an opportunity to work on a bunch of different skills.
Lots of things to continue to work on as he gets ready for kindergarten. I think many of these issues will continue to be emphasized in his afternoon autism classroom (he will be in the typical classroom in the morning).
It was interesting being back in the building again. Lots of memories
flooded over me from our previous visit. On the surface I noticed how
almost everything there was the same - the toys, the color of the wall,
the furniture, the feeling in the waiting room.
In contrast, so much has changed in our lives over the last
couple of years. Autism, politics, work. I know that I look at the world differently than I did
prior to Simon's diagnosis. There has been a softening - or maybe the correct term is an awakening - inside of me and it has impacted every piece of myself and how I see people and the world in which we live.
Simon is the same amazing, handsome, fun kid he was the day we took him in for his first evaluation. He has definitely made progress and continues to grow and develop. The child psychologist remarked more than once yesterday on how there were times during the evaluation where Simon's eye contact and connection with him were fantastic. I loved witnessing that and loved that he is a man who is in tune to those sorts of beautiful moments.
Overall, it was a good visit.
Sitting here today it is tough to put into words all the emotions and observations and thoughts that carried me throughout the eight hours we were there. For me, writing it all out continues to be a big part of how I process and organize all this information. My observations will always be a bit cloudy as I find it hard to separate the hard facts from the emotions that seem to go hand in hand with being the mama. But that is ok, I am not the doctor nor am I the evaluator. I am the mama.
As for today, today we are moving forward once again. I sense that both Chris and I are back on best behavior. I can hear it in our voices when chatting with Simon. I could see it in the choices I made at the grocery store this morning and in my meal planning for this evening.
One day at a time. One foot in front of the other.
Ali, you articulate this stuff so well, and you and Chris analyze the information so well. Simon is SO lucky to have you two as his parents. Thanks for opening your heart to all of us. I have a niece with Down syndrome, which is not autism, of course, but another area that needs to be expounded on.
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Thanks so much for telling us all exactly how his autism impacts your lives. You have sometimes hinted at things in the past, but I have much more insight now. Being from South Africa I am sad that we are not going to see you this year, but salute you for the choice you have made. Some times we allow duty and obligations to take precedent and it is tough but very inspiring for me to see you put family first. Thanks for your inspiration.
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Ali: you hit it on the head when you spoke of you being on your best behavior. Rest assured that those of us who actively parent get on and fall off of "best behavior", too and that when you parent (verb) it doesn't matter if your child is special needs or not...it's damn hard to be everything they need every moment of their lives. I LOVE your Simon posts...not because I get insight into the life of a "special needs" kid, but that I get validation from another mom who gets how hard it is, but that also realizes that it is about the process, for him AND you. You ARE the mama...and an inspiration to me, because I am the mama, too. Congratulations on your successes, and I hope that you realize that even in your not-so-successful times, there is much to be happy about and thankful for. THAT is the essence of mamahood.
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p.s. we just found out tonight that we are moving back to Oregon after three long years away...to Eugene in fact... :)
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Ali, you are an amazing Mum....i get blown away with all the cool learning experiences you and Chris provide in normal day to day stuff.....and(as erin already said )you are so welcome to come over for a play date if you make it back to nz...Remember you are the best mama Simon has ever had!!!! take care Rxx
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Hi, just a little thing that I do with my daughter each night. Once we have had the story and she is in bed I sit down next to her and I ask her what did we do today? It helps her memory and recall but also gets us talking about the day, she will now ask me what mummy did today, daddy did today and a whole host of others that prolong the bed bit by a few more mins.
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Such an amazing post, such an amazing share. It reminds me that I could do so re-evaluating on how I am doing as a parent. I too have a picky eater...nuggets, pasta, white rice, M & C.....and it is so easy to give in. Then I read somewhere (I believe in Parenting Magazine) that it takes up to 8 times for kids to acquire a taste for something. So that became a rule in the house, one bit each time we served it. IF after the 8th time, she didn't like it, then it could be dropped but not until then. It amazed me how much that work. She now has added lots of green vegetables in the mix.
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Hi Ali, my daughter dosn't have Autism but she has a speech delay as a result of being born with a cleft pallette, so in a small way i undertsnad the range of feelings you are having anf all the emotions associated with them. i know sometimes i wish she was just like the others and not have the struggle with reading and writing that she does "Why cant she just be normal" i continually say to myself, but what is "normal"?. I just try to daily be thankful for the progress she has made, and continuess to make. She is in her first year at primary school (Prep - as we call it in Australia) and we have just been given her first semester report, aside from the areas of speech and writing she is performing exactly were she is required to be for this time of the year. I was so proud of her, and all the hard work she has done to reach this milestone. I am also proud of myself and her daddy for all the hard work we have put in to help her to this point. Many tears, frustration etc later and all in all she is just our perfect little 6 year old girl, who gives us so much to be proud of her for.
So i guess in the end, all i am trying to say is, Simon is perfect the way he is(Which you already know) he may have to deal with Autism, but i think that these challenges make our kids even more special.
I celebrate my daughter and her achievements daily, and whilst i have days when i wish things were different they arnt and i just get on with it one foot in front of the other.
Simon is special and well done to him for all his wonderful achievements
Take care of yourself
Samantha
Australia
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Ali and Chris
I think I have told you about 20 times how amazing I think you both are as parents, and how lucky Simon is to have you both as his Mom and Dad. After reading this post, I'll tell you again! You guys are fantastic!
Before I met you, I knew absolutely nothing about Autism. I still dont know enough, but my understanding is vastly better thanks to what you write and the way you educate us as your readers. I relate so much to your experiences and I know in my relationship with my nephew, I often think to things you've said. I look for things that I wouldn't have known to look for.
I am sure there is no easy answer for Simon or for you but you do an AMAZING job, Ali. You really do. You and Chris are so hands on with how you interact with Simon, and you inspire us all (even those of us without kids) in your endeavours. You see, one of the big factors for me is that you TRY - you do whatever you can, whenever you can, and that is SIMON's best ally. He has people who will do whatever it takes to help, and he is automatically better for that.
You're a trooper, Ali.
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wow, dude. incredible post, so rich. I'm thinking about you guys, as I always do. :) P
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wow, dude. incredible post, so rich. I'm thinking about you guys, as I always do. :) P
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I hear you and recognize so much on every level of the way you feel and on the way simon/anthony acts. Being awaked over and over on this end too. I think we need that to keep focused.
corinnexxx
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just a thought - he loved the DRUMS at the fair.
Perhaps this could be a fun instrument to use, as a way of communicating & taking turns, and expressing/describing emotion?
(eg. Some restaurants in our game/nature parks, announce dinner-time, with drum rhythms)
I so wish we also had your resources down here - information is so empowering if, like the three of you, one has the courage to face up & use it.
Well done!
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Ali - I SOOOOO recognize the being tired and giving in... we have a physically handicapped child (he has RDEB) and it is so difficult to be consistent. Sometimes you just get plain tired of it and there are times you'd probably just want to leave it as it is and go away. It needs time to adjust - for everyone in the family (it took us at least 5 years). If I may say so, you're doing a great job. Simon has improved over the last two years - and he will continue to improve because of all the effort you and your husband put into his life. Give yourself a big pat on the back for what you've accomplished...
Big hug - Liesbeth
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Hi Ali~~~
Just wanted to comment on today's blog. I am experiencing a very similar situation with my daughter Aubrey. She was diagnosed with PDD in 2005, and has since been attending our local early intervention preschool. We are gearing up for our re-eval. in the next few weeks as well. I am really on the same page with some of your stated apprehensions/emotions/realizations. It is really comforting to know that there are other parents out there with the same concerns for our not-so-neurotypical little ones. Aubrey is 4 and will be attending pre-K this year, with the hopes of being able to wean her into some mainstream class time toward the end of this '07-'08 school year.
I wish your husband, Simon and yourself well on your journey, and as always, look forward to "aezine" and "Studio A." Thanks for being such an "upper" in my life.
Ann Ford
Indianapolis, IN
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Ali your timing couldn'y be better. I am in the process of getting my little guy evaluated and emotionally I know totally where you are. Thanks always for sharing.
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Thank you for being an open honest mum. This is the second time you have made me cry lately - the dentist trip got me too.
Please know you are an encouragement to many.
Amanda (from Sydney, Australia)
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Wow, Ali! I have goosebumps from reading that. I can relate to so much of what you've said here. It's funny. I get the same feeling when I go back and read the very first book we read on autism (More than Words, published by the Hanen Centre)... I get the same feeling when I go back to the journal my husband and I kept at the time of our son's dx... and (sadly) I'm starting to feel the same pangs when I listen to my sister talk about her son. I haven't seen him since his first birthday, but there are definitely signs of some sort of pervasive developmental disorder... the language delays (naming things, not back-and-forth conversations), the behaviours, the lining up and sorting of toy cars by colour, the spinning of toys. *sigh*
Sorry, I am rambling. What I really meant to tell you is that you and your family have been on quite an amazing journey for the past few years. Simon's a GREAT kid and you and Chris have helped him along. You're doing a great job. Congratulations to all of you!
Btw, if you figure out the secret to getting him to eat stuff other than chicken nuggets, please do let me know! We have a very picky eater here too. Let's just say that bagged lunches present a REAL challenge. lol
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Ali, I can so relate to all this. All I can say is hopefully it will come. God gave us our special little guys for a reason. I have to believe that He gave me Will because he knew I would do right by him. When it comes to the emothion's Will has started getting extremly sensitive. We first noyiced it when he was watching wonder pets and the puppy had to peepee all of a sudden Will busted out in tears like he had been hurt. It took us awhile to figure out what was going on. He does this when the music is sad. He has now started making sound effects while reading books and I think its becouse I change my emothions as I read and now he looks at faces and can tell you this person is sad by fake crying. Wills vocabulary is limitetd so this works.The eating is the last thing I would worry about as long as he is eating. We interduce one new food a month and by the end if he doesn't eat it fine we try something else. Socially Will is getting better. He has started playing with his sisters a lot more. So my advice there is to have another one. We also have started going to a church that meets once a month and it is for families with special need children or other family members. Its called Rising Above and it has helped all of us.
My best advice is to simply love him. I know I always think about what he is missing out on and it upsets me but not him.And as a parent you always ask yourself if your doing enough even with my daughters I do. Its just natural. You are a great mother and you love Simon more than life its self. Thats the important thing.
Jennifer
http://simplywonderful-jennifer.blogspot.com/
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We all need to reevaluate ourselves from time to time. Finding social activities and broadening his diet are two of the things we are working on, too.
That's so great about Simon's eye contact! :)
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YOU SAID IT BEST "ONE FOOT IN FRONT OF THE OTHER"
{VICKI}
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Yes, you *are* the mama. And I firmly believe that God knew exactly what He was doing when He gave you and Chris your little boy.
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I am also concerned for my sons nutrition-he will not eat a vegetable or fruit(sometimes a banana) He did eat a frozen pea the other day so I suspect a texture thing. I am thinking of checking out this book
http://www.amazon.com/Sneaky-Chef-Strategies-Healthy-Favorite/dp/0762430753/ref=pd_bbs_sr_1/102-4330800-2306559?ie=UTF8&s=books&qid=1184763675&sr=8-1
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Hi Ali:
What an amazing mama and Dad Simon has! I feel blessed to have stumbled onto your blog this spring...our 3-year old son was diagnosed with autism in May. We are still trying to sort everything out.
We can relate so much to everything that you share with all of us about Simon. I am amazed at all that you accomplish with your family and your work. Keep up the awesome work!
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My thoughts and hopes for all the success in the world with Simon are with you, Chris and Simon Ali. You are doing a GREAT job with him mom and never 2nd quess that. Keep up the great work. You have an amazing son.
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