Ali Edwards Capture life. Create art.

July 17, 2007

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.

Comments

  • 1.
    Ann said…

    My best to you. it sounds like you are an amazing mom to Simon. good luck with those foods. We all get so busy.

  • 2.
    Amy said…

    Good luck to you and Chris…and Simon, Ali. I know just what I read in your blog, but I think you two are amazing parents. You inspire me.

  • 3.
    dolores said…

    Simon’s parents ROCK—-

  • 4.
    Erin said…

    Hey Ali….my son Jack’s FAVORITE part of the day is when we are going to bed, and we talk about our day. What our favorite part was, what we didn’t like, how that made us feel, etc. Sounds a little touchy-feely, I know, but it means the world to our almost 4-year old, and that’s all that counts. Our day just isn’t complete until we “talk about our day” together. And as a parent, this is such a great opportunity to get inside your child’s head (is he grasping things? understanding situations?, etc.)Thanks for sharing your family’s progress, and keep up the great work! And if your ever in the Austin area, come on over for a play date! Erin :)

  • 5.
    Lisa Jackson said…

    All of us just do the best we can. Hang in there, sweet girl.
    Thinking of you.
    Rest. Eat chocolate. Be good to yourself.
    Lots of hugs.

  • 6.
    Jen Kotas said…

    Sounds like you have some really great resources available to you! My son turned 5 in May and is on the Spectrum. Making the right decision is always so difficult for us right now. There are so many right decisions. I love hearing your perspective.
    Jen

  • 7.
    Rachel said…

    I know exactly how you feel. My son is 3 and also has autism. Just like with Simon, our main concern is also with Zack’s nutrition. And the eye contact! You know how great it is when he’s really looking at you, and maybe even laughing with you at the same time. These kids are amazing and the progress they make is just remarkable!

  • 8.
    Jo R said…

    HI Ali!
    Just wanted to say what a great Mom & Dad you and Chris are to Simon. You can tell from the way you write about his triumphs and troubles that his wellbeing is at the centre of what you do. I nearly cried again yesterday after reading about your super-positive trip to the dentist; it’s good to see how Simon is growing and developing so well, and be reminded of the progress you are all making.
    Jo x

  • 9.
    Sara in B'ham said…

    Hey Lady!
    A game we play at the dinner table (that I totally stole from my friend Lyndie) is 3 things that made me glad, sad,and mad today…hearing their answers (they’re 8,6, and 3) is so fascinating and I’ve learned so much that without our game I would have totally missed out on. Simon is so lucky to have you and Chris in his corner.
    Sara in B’ham

  • 10.
    Lauren Z said…

    Hi Ali-
    My nephew is 5 1/2 and also has autism- a mild case- but we as a family have alot of the same issues (conversations, eye contact, keeping focused) but there have been some things that have helped.
    Having him help with small things that focus into a larger picture keeps him focused on the big picture- and also helps with his food habits. He can use a kid knife and cut some carrots to help “like a big kid” make dinner. He will then be more likley to focus on the task, be social, and he will also eat the food that he has helped prepare (good ways to get healthy food into him).
    Also- you are a craft goddess, but have you had him “help” make a picture book for himself ?(without words?) Take pictures that involve him in a setting (like his swim lessons, or the Drum event at the fair)- pictures with a strong memory attached, and keep the pages very mellow (maybe just soft colored cardstock), and everynight go over the book and have him tell you the story from a few of his favorite pages. it encourages activity recall, social skills and opens doors to a love of books and a desire to share his feelings and memories.
    not a ton of ideas, but maybe they will help simon too. You are a awesome mom!

  • 11.
    Kate Greenslade said…

    Awesome news Ali. Great re-evaluation for Simon. As someone above has said, we are all doing the best we can with what we have – this includes our energy levels. do the best you can for you and your family, each and every day. And on the days that you look back and feel you didn’t do your absolute best, forgive yourself. Each day starts anew, with no mistakes in it, for a reason. So that we may start again, and do our best.
    Take care.
    Kate

  • 12.
    Meg said…

    Coming from a mom that just bought more yucky chicken nuggets and fish sticks at Freddy’s today, I hear you and need to follow your example. So glad that you are able to get continual information and evaluations, that is such a help.
    We can do a playdate anytime, Simon might enjoy playing with my Emma, along with George. She’s certainly used to the special challenges and excitements of our boys! Email me when you have some open time on your schedule.
    Congrats on all the progress!

  • 13.
    nina said…

    You are an amazing mother, Ali.

  • 14.
    Ali said…

    I don’t have children but having worked with kids with diagnoses inthe autism spectrum as both a speech pathologist and a psychologist, I thought of a couple of things that might help.
    First-identifying emotions. It might help to make a book where Simon is the subject. Initially, he will have the opportunity to emote when you are taking pictures for the book. Sometimes, it is much easier to identify feelings on his own face before he looks at strangers’ faces!
    Second-the whole chasing thing. My best suggestion to you is to make it a game, but a game with rules. Maybe idetifying a funny word that he has to remember and when he hears that word he has to freeze. You may have tried this, but if not, this or some version might help break his focus.
    Good luck!

  • 15.
    karen said…

    Ali, you are a wonderful person and I appreciate your openess. Thank you for sharing your life with us.
    I do have a suggestion for Simon’s behavior coaching/management when it comes to running away. I am a regular ed teacher in a middle school, but I attend special education seminars/conferences every year. At the last conference I went to in March I attended many workshops pertaining to Autism. At one of them the presentor explained a method in which you use the character(s) that the student/child is interested in and write a story about that character in a situation that the behavior would occur and what the appropriate behavior is. Children are more apt to act like their favorite characters when they are in the same situation. I apologize I do not know the correct terminology (I know there’s a name for this stategy) and the exact details as I am not at home and cannot consult my notes. If you are already aware of this strategy, thanks for reading, if not ask Simon’s specialists if they are familar with it.
    You and Chris are terrific parents and Simon is one lucky guy!
    KarenC

  • 16.
    Michele said…

    Good luck to all of you. One game we play with our kids is called high/low. Everyone goes around the table and tells the best thing about their day and the worst thing. For my son with speech (vocabulary) issues, this was hard in the beginning, but has become a good thing for all of us now.
    In my classroom, I have students who need extra language practice recite the directions back to me in their own words. It helps them learn how to manipulate language to fit their needs.

  • 17.
    Shanie said…

    Ali…you go Momma! :) Shanie

  • 18.
    Beth said…

    Ali:
    You are awfully giving to all of us to keep us up to date as to Simon’s progress with his autism and his typical life as a little boy. I love the details you share.
    A couple of thoughts:
    A great toy company, Melissa and Doug, have what they call “cutting food”. It is wooden carrots and other items that a child “cuts” apart at particular velcro seams with a wooden knife. I wonder if “playing” with food in this manner might instill a curiousity about the food in Simon?
    Also, along the idea of the memory book an earlier writer mentioned, is the idea of an “Alphabet Book” you make or the two of you work on. What I did was for each letter, I included a couple stickers and/or die cuts of items beginning with that letter, but I included at LEAST one photograph related to that letter that my twins recognized. Then, we sit down, the kiddo on my lap tells me the letter etc., but the POINT of all of this (sorry!) is they tell me what that particular photograph is there for. For instance, “F” has a photo of a fire truck that was housed at their daddy’s fire station. They could tell me all of those details, as well as what city it was in, etc.
    Just a thought as to a conversation/longer sentence starter.
    Have faith in yourself Ali. And believe me, my four boys and I face each day with “one foot in front of the other”. : )
    Beth

  • 19.
    Lisa Bracale said…

    Ali, Simon sounds like such an amazing little boy. He has the most beatiful brown eyes and little smile. I’m glad he has made progress. This can’t be an easy thing I know I’ve seen post about just going to the post office and grocery store can be difficult. I went through a situation with my daughter who Had Selective Mutism who most people including teachers never heard of. My daughter refused to make eye contact, head down didn’t speak to anyone but me, Dad and Grandma. It was a horrible tense first 4 years of her life. I knew something was wrong when she wasn’t even a year. spoke earlier and big words, sentences but nobody but us knew it until years of specialist therapy and medical invention for 6 months and then small steps. Now she is a 9 year old happy girl and may not be the most outgoing in her class but honor roll student, awesome at sports and has friends. I remember being at a convention with 100′s of parents who children suffered this “silence” disease and thought I don’t want to be sitting her when she is 16 years old. Good luck I read the blog dailey and he sounds like he has made amazing progress in school.

  • 20.
    Bonnie Rose said…

    thank u ali, for sharing such a most intimate part of ur life with all of us.

  • 21.
    Tracey McNamara said…

    Totally agree with Melissa and Dougs’ cutting food toy for encouraging interest in trying foods. (If nothing else, it is a satisfying little task that even mamas have fun with!)

  • 22.
    Brenda Kauffman said…

    Hey Ali,
    Hard to believe, but we will be once again living in my beloved Oregon in just a couple of weeks. We will be living not too far out of Salem so if you and Simon are ever in the area when Chris is working, we’d be happy, ever so happy, to schedule a play date! My son, Saroj, is five-years old and my daughter, Shanti, is six. They both struggle with attachment issues (they were adopted last year) and I know how hard it is to parent a child with special needs. It’s not just about getting too busy, it’s about being exhausted and feeling like you are in “survival mode” more often than you want to be.
    I am right with you with the whole nutrition thing. Shanti has entered something called “precocious puberty” which is common among children adopted from developing nations and brought to the U.S. It is partly related to all of those chicken nuggets, but primarily due to stress…(nothing like the overwhelming frustration that comes with knowing that your child is suffering.)
    I have Shanti on a waiting list to see a counselor from OHSU to see a therapist regarding her attachment issues and post-traumatic stress. I know just how hard it is to get her to make eye contact and develop social skills.
    Anyway, just wanted to extend an invitation. I know of some great coffee shops and kid-friendly places in the area.
    Best wishes,
    brenda kauffman

  • 23.
    mellymel said…

    It can be so hard sometimes to see progress in everday living. I’m so glad you had the opportunity to reflect on your family’s journey and growth (and see PROGRESS). It’s a beautiful thing. Take care!
    melanie

  • 24.
    Amy said…

    Your post reminded me of something that I saw on ‘The View’ a few months ago. I dont have kids, but I thought this was such a great idea. Rosie had on her sister in law, who is a trained chef, but now a stay at home Mom. And in order to get her kids to eat healthy food, she disguises it as fun food. Like for example, she makes meatloaf in muffin trays and “ices” them in mashed potatoes, to look like cupcakes, it may have even been cauliflower mashed, but you get the idea. It was so creative. She also hid things like ground flaxseed in the meatloaf. Just a thought! :) Maybe you could decorate the cupcakes with some peas and carrots like sprinkles and Simon could help?

  • 25.
    Cassie Hunter said…

    You are amazing Ali! How you have articulated the visit yesterday is just overflowing with love for your wonderful little man. I wish all the love in the world for you and your family.
    Cassie (in Australia)

  • 26.
    Sarah said…

    It is great that you are taking the time to not only check in/up on how Simon is doing but to also reflect on how you both are doing as parents!
    As far as the running away goes, have you tried any social skills stories?
    I have not used them with anyone as young as Simon (but they are out there and you can script your own and draw little pictures to go along) but that is because I work with Middle School Students.
    Basically, and this is really rough (I’ll be back with some links and a book title tomorrow as I am at home and that info is at work), you describe the behavior you would like to occur in a given situation in a story with short and to-the-point sentences and pictures as necessary/as you wish. I have also done this with the comic book program that came with my mac and, in the moment, have drawn pictures/written the words. ill be back with links and info.

  • 27.
    Allison said…

    simon is so so so lucky to have wonderfully concerned parents like you and chris. so many great resources you have as well.
    i don’t have an activity, so much as a suggestion, but i work in a teacher supply store and we have many teacher resources dealing with autism. just in thumbing through them, they have many strategies in dealing with behaviors that autistic children are likely to have. you may want to check amazon for some of these great resources.

  • 28.
    Donna F said…

    Hey Ali! I love to hear how Simon is doing.
    Regarding language skills and a very fun thing our family does at dinnertime or bedtime is “count your blessings.” We all sing the “count your blessings” song (a church song) together; then we go around the table and say our favorite part of the day–what we are most thankful for. No repeating each other! Its easy; not too long; yet very memorable. Helps us remember the great day, and to be thankful, and know that God is blessing us no matter what!

  • 29.
    Michelle said…

    You will make it.
    Chris will make it.
    Simon will make it.
    Keep up the good work.
    It’s not easy.

  • 30.
    Tish said…

    I thought of you and Simon lately when doing some research on service dogs. Service Dogs of Virginia has a program using service dogs for children with autism. The beauty of it is that the only charge is your cost for accomodations during 2 weeks of hands on training with the dog, parents and child. Typically service dogs can run up to $25,000 if you have to pay out of pocket. Service Dogs of Virginia will assist out of state, with Virginia residents getting preference. But I’d be surprised if there isn’t a similar organization near you.
    I’ve attached the link.
    We have just had our dog go through the first level of service training. I have MS and she is learning commands that help me use her when I need assistance getting up or need help opening a door, etc. A dog’s intuition about the needs of those they bond with is an incredible thing.
    http://www.servicedogsva.org/
    Look under the programs link for the autism program.

  • 31.
    Wendy Swanson said…

    I’m a speech therapist at a school in northern Indiana and Teach Me Language is a great resource for children with autism who have verbal ability. It gives really good ideas for teaching conversation turn-taking, pretend play and even some higher level educational stuff even dealing with money. Also the sight Do2learn is has a great game for teaching emotions as well as an free access to really good printable pictures.

  • 32.
    VexedAngel said…

    I hope you don’t think I’m simply a music-therapy-advertising drone, but your recent posts have made me perk up my cyber-ears. :-)
    The goals that you mentioned… In my first practicum, with a small group of preschool-aged boys with autism, we worked on many of the same goals as you wish to work on with Simon, such as: social skills + turn taking, behavior management (focusing on staying-in-seat behaviors and focusing behaviors), identifying feelings, conversation skills…
    For example, I used instrument, structured music-making, and activity choices for the turn-taking… Musical improvisation and turn-taking to mimic/model conversational behaviors… musical incentives and preferred activities for behavior management… Check-in songs to express how they were feeling, and to identify how other people were feeling based on their choices…
    I still have the visual schedule I created, in a brightly-colored book format to focus and engage the boys during their music therapy time. You can see it here: http://www.vexedangel.com/gallery/Visuals-for-Group-with-Autism
    You can click on the pics to see them larger; underneath each, I kind of explain it and what was going on when I used it. :-)
    I always love to hear your approach and attitude towards this, it is always wonderful to hear how loved a child is.
    Ann Marie

  • 33.
    Erin Wells said…

    Hi Ali,
    So glad the eval. went well for all of you! While reading your words about speech and conversations, a song popped into my mind…one I do with my students with special needs (including autism)each morning. I admit, some kids say the say thing each day, or point to the same picture, but they are still participating in the process of turn taking. Its amazing as time goes on how they do learn how to choose different answers. So cool.
    So, here goes…
    “Simon, Simon what do you say?
    What was fun for you today?”
    It is so simple, and can be given any tune you like. Just thought I’d share. Good-luck on this new adventure!
    -Erin

  • 34.
    Yanah said…

    Ali,
    You are such a great mother, such a great woman and human being.
    I admire you so much!
    Yanah

  • 35.
    jmb said…

    Thanks for your candor, and your ability to share about your struggles and joys as a mom. You are really doing great and are such a light.

  • 36.
    Megan said…

    Thank God that little guy was born to you two! Great job!

  • 37.
    Joy said…

    (((hugs))) Ali. It is so good to check in, and yet again, it’s taking another turn on the road of the journey. And (to cop a phrase)… [i]it is okay[/i]. I hear the momma questioning in you, but I also hear so much love. So proud of all three of you! Hugs to Simon too, for being the very best Simon he can be!

  • 38.
    Dana Smith said…

    Your blog is such a wealth of information with regard to Autism. We spoke at CKU-Atlanta last year….my daughter is going into Speech Therapy and wants to work only with Autistic children. Since last Summer my oldest daughter has decided to get her Masters in Special Education at the University of Tampa(she just finished an undergrad degree in Special Education with ESL infusion). She wants to also ONLY work with Autistic Children. Until just a couple years ago neither one of my girls had ever known one single Autistic child. Thank you for giving my girls a Parent’s perspective….your blog entries will serve to be invaluable to them as they continue their studies in this area.
    Dana Smith in Virginia

  • 39.
    Mia said…

    Ali, I just wanted you to know that Simon is one of the major reasons I read your blog. I spent several years teaching adapted swim lessons to autistic children all over the spectrum. I remember the constant struggle for that moment of connection. With most of the kids I worked with, it was a very rare occurrence. Every time I see a picture of Simon where he is looking at you, smiling at you, and genuinely showing the love he has for you, I can’t help but get a smile on my face and a tear in my eye for how well you are doing with him. Even with all the struggles, you are raising a great kid. -Mia

  • 40.
    Anne said…

    Hi Ali,
    Don’t want to be a “scary fan,” but I wish you could know how you and your own life’s journey have redirected my life. I don’t have any amazing or dramatic stories, just a mom who is rolling up her sleeves everyday, trying to do the best I can for my little buddies. I’ve definitely lost some of myself in all of this. My everyday is so rich and meaningful with these amazing kids it’s hard to admit anything but positive things. From you, I have realized how important it is to be a person as well as a mom. I am working hard to find that person and funny enough my kids love it when I do things that I love! Duh!! Anyway, my thoughts are with you and I just want you to know that you are not alone in feeling the overwhelming want to do the right things for Simon. You are a mom and that is big. Your love and persistence are enough. You are exactly what Simon needs. Take care!

  • 41.
    Amy Cline said…

    What an amazing blog entry. I am a teacher and will have an autistic student this year. I teach 2nd grade so he has some things/routines in place. I am excited, nervous and anxious about this learning experience. I am so amazed at the spectrum that comes with austism. No two people are alike. Thanks for being so open about your family. I have learned so much from you.
    Amy Cline

  • 42.
    Sherri said…

    Wow! I just have to say that Simon is a very fortunate little boy to have such wonderful, amazing parents.

  • 43.
    Carla said…

    Ali, my prayers are with you and you family. You are an inspiration to everyone who has children. thank you for sharing these tough moments with all of us.

  • 44.
    jenn said…

    One day at a time, positive thoughts, keep moving forward! You guys are doing awesome! Your great parents and it shows!!!

  • 45.
    Anna Beth said…

    The story of your family is an amazing one. Kudos to you and Chris for all of the love, patience and hardwork that you have put into the think called your life. Thanks for being willing to share your journey with us!!

  • 46.
    Erin B said…

    Sounds like Simon is making progress and you and Chris are doing the best you can to make his world a place he understands and connects to.
    With many of the kids I work with I do a “news of the day” song where they tell me what they did that day and I tell them what I did that day. I ask specific questions or give hints to get things going or I use a picture chart to help with telling me 3 things they did that day or more specifically (with pictures) “I ate ______”
    “I saw ______” etc.
    I agree with previous posts too about using social stories to address the running and other behaviors. Also, always make sure his sensory system is on track when the running occurs, sometimes running is a great way to release the anxiety of a situation and to help him regulate his body.
    Good luck and keep plugging along. Simon will continue to grow and develop as long as you keep loving him and pushing him and connecting with him.

  • 47.
    lisa sanford said…

    Been following your journey for the past year and although I’ve never dealt first hand with autism with my own five children, I have become more aware of what my children are doing because of your ups and downs. Tonight, I too will sit down and journal about my oberservations of my children and how they see the world and how I see the world so differently from being a mama too. It’s not easy sharing something so emotional and private, but you’ve been such a great help and encouragement to so many.

  • 48.
    melanie said…

    just a thought having taught in a public school that mainsteamed MANY kids on the austism spectrum into the “regular” classroom…
    a student I had in third grade, Danny, had spent K in an intervention school specifically for austism, and then entered our “regular-old-public” school in first grade. each year his mom presented the students in his new class with a slide show presentation to help the students in the class understand Danny and his behaviors. The silde show had pictures of Danny doing things that all kids his age loved to do to show how he was the same as everyone else in the class(eating pizza, opening presents, playing games, etc.) Then other photos were to help explain his needs and behavior (example: pics of the things that made him upset (lawn mowers and other things that made loud sounds for instant.) It was AMAZING. the kids adored him! it really took out the fear factor that little ones can sometimes have encountering someone who might act a little different then what they are used to. My class was so helpful and understanding, so patient. I should mention she had to do the slide show while he wasnt there because he would get upset if she stayed in the room to long-just too much out of his routine! But it was so great to hear his own mother (not just the teacher) explaining that he sometimes repeats things, he might talk extra loud at times, & his other little “quirks”. I just cant say enough about how powerful I think this was. Danny went on his first field trip with our class to a play no less! He had his class picture taken and even ran our class meeting by the end of the year. Okay I’m done rambling,LOL,
    …hope I made my point, if you need more specifics please let me know!

  • 49.
    tammy b said…

    while i can’t know exactly how you feel, i think i’m somewhere in the ballpark: i had a set of twins at 31 weeks – one was 2lb and the other almost 4; we have been incredibly blessed, and they are healthy and happy little girls. every year we go to CHDD at the UW (seattle) because of their high risk as preemies – physically & developmentally. i know the fear, the hope, the frustration and the doubt; i know how it feels to feel as if you maybe haven’t done enough as parents and i know what it’s like to be validated by ‘professionals’.
    so while i don’t know exactly how you feel, i can nod my head, cluck my tongue, and say i understand. because i do. keep up the good work with your little man…my 3 girls send him some hugs.
    tammy b

  • 50.
    Lynne said…

    Just wanted to write and send positive thoughts and hugs your way today.

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