Just had to copy and share this...I'm sure every mom or dad can relate to this story but more so parents of special needs children because the OFF button is so much harder to turn OFF!!!
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Dear Shopper,
Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.
This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.
Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.
My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.
Who knows? Maybe I’ll get to see the one hidden behind yours. Found this story on a very helpful blog at:
http://flappinessis.com/
Thursday, December 29, 2011
Tuesday, November 29, 2011
We have an iPad!
Sam was gifted an ipad today from Gary James of www.a4cwsn.com. We were the recipients of the 50 states, 50 ipads to 50 children campaign!!! Gary James came to our house early in the morning to hand deliver the ipad. We also had the RI recipients join us to help save Gary some traveling time. It was nice to also meet Rebekah, Joshuah, Laura and Karl Tirrell!
I spend ALOT of time on the A4 facebook page, probably too much time but there are so many great resources there for apps, education, therapy and most importantly MANY other moms of kids just like Sam. It's a family, a community, a place to go where people GET it!!!! Thank you to Gary James for taking his vision that every special needs kid should have the resources to help them therapeutically, in school, at home and yes, to get an ipad. You can check out the group at http://www.facebook.com/a4cwsn. Just don't be scared if you go there one day and see either funny stories about chocolate milk, Gary's pet sticks or some crazy drama going on! It's all good- just come back another day to join in on the fun!!!
Lastly I have to say that Gary is an amazing man with a heart of gold! WHO do you know that drives 20,000 miles across the US to hand deliver ipads? He spent weeks away from his wife and 4 young kids (2 of who are also special needs). Gary has given us and many other families the gift of an everlasting friendship and a voice for our child with the help of the ipad. Thankfully at the same time Sam has also BLOSSOMED with language! We are truly blessed!!!
I spend ALOT of time on the A4 facebook page, probably too much time but there are so many great resources there for apps, education, therapy and most importantly MANY other moms of kids just like Sam. It's a family, a community, a place to go where people GET it!!!! Thank you to Gary James for taking his vision that every special needs kid should have the resources to help them therapeutically, in school, at home and yes, to get an ipad. You can check out the group at http://www.facebook.com/a4cwsn. Just don't be scared if you go there one day and see either funny stories about chocolate milk, Gary's pet sticks or some crazy drama going on! It's all good- just come back another day to join in on the fun!!!
Lastly I have to say that Gary is an amazing man with a heart of gold! WHO do you know that drives 20,000 miles across the US to hand deliver ipads? He spent weeks away from his wife and 4 young kids (2 of who are also special needs). Gary has given us and many other families the gift of an everlasting friendship and a voice for our child with the help of the ipad. Thankfully at the same time Sam has also BLOSSOMED with language! We are truly blessed!!!
Saturday, May 7, 2011
Slacking with food trials
Sam's last scope in March was clear which means he had no eosinophils in his esophagus from the last bunch of foods we had trialed; turkey, rice flour and rice chips and strawberries. Met with his GI doc, allergist and Nutritionist on 3/28. Was probably the shortest appt. and we all agreed to trial corn, beans, 1 more fruit and beef next.
Well it's the beginning of May and we haven't done much. He ate some beans with white rice one night but then vomited, maybe texture of the rice? Then he vomited 4 times during 1 week and we weren't sure what was going on. Maybe seaonsal allergies or a virus? It's always a guessing game. I want to make some corn bread, muffins and pancakes over this next week unless we try hamburger with him. Will see. The last few days he's been very hungry and wanting more formula. He's had 4-8 ozs. more a day and has wanted more food too. Maybe a growth spurt or he needs more food. I know I shouldn't worry but I do worry a little bit when he drinks more formula consistently. I'd rather him eat more food and a variety so I really need to work on that.
School- Sam started full day preschool on March 30th. He loves "stool" as he says! He's also just started saying "more" besides just signing it. It's so cute the way he says it! I have to keep reminding him though every time he signs it to say "more". He's learned so much from school already. He comes home and takes off his jacket and wants to hang it up like they do at school. He sits down and tries to take his shoes off and will put them back on but on the wrong feet. He is using a fork now most of the time. I was working on that with him but he just started doing it at home this week. Every day when we get home from school I go over the paper that is sent home with him to see what he did at school. Obviously he can't tell me what he did so I love that they have this detailed sheet where they circle things or write in what they do. I ask him questions about his day and he will either shake his head and smiles yes or say "noooo" even though I know he did that certain thing. I think he's being silly sometimes with all the "no's" but other times I'm not so sure. Anyways he goes to school M-F from 9-2 and gets all of his therapy services during those times. I'm thinking he may need additional speech and ABA therapy outside of school. We will be meeting with the ABA therapist again on 5/19 to go over how he is doing in school and what else he needs at home or in the community. We've had some tough days this past week. He's been communicating more with words and showing us what he wants but at the same time his "episodes" as I call them have gotten worse again with getting very upset and for a good 45 mins. Again these aren't your regular 3 year old tantrums. Don't even feel like getting into them right now but it's not fun. I'm tired and warn out every night and that's still with him going to school for the 5 hours a day. One day we'll get a nice vacation or a day off but for now I'm happy to still be home and here for him when he needs me!
We've been putting a lot of work into his EOS fundraiser on 5/19. It should be a great turnout and I can't wait!!
Thanks for reading and trying to keep up!
Well it's the beginning of May and we haven't done much. He ate some beans with white rice one night but then vomited, maybe texture of the rice? Then he vomited 4 times during 1 week and we weren't sure what was going on. Maybe seaonsal allergies or a virus? It's always a guessing game. I want to make some corn bread, muffins and pancakes over this next week unless we try hamburger with him. Will see. The last few days he's been very hungry and wanting more formula. He's had 4-8 ozs. more a day and has wanted more food too. Maybe a growth spurt or he needs more food. I know I shouldn't worry but I do worry a little bit when he drinks more formula consistently. I'd rather him eat more food and a variety so I really need to work on that.
School- Sam started full day preschool on March 30th. He loves "stool" as he says! He's also just started saying "more" besides just signing it. It's so cute the way he says it! I have to keep reminding him though every time he signs it to say "more". He's learned so much from school already. He comes home and takes off his jacket and wants to hang it up like they do at school. He sits down and tries to take his shoes off and will put them back on but on the wrong feet. He is using a fork now most of the time. I was working on that with him but he just started doing it at home this week. Every day when we get home from school I go over the paper that is sent home with him to see what he did at school. Obviously he can't tell me what he did so I love that they have this detailed sheet where they circle things or write in what they do. I ask him questions about his day and he will either shake his head and smiles yes or say "noooo" even though I know he did that certain thing. I think he's being silly sometimes with all the "no's" but other times I'm not so sure. Anyways he goes to school M-F from 9-2 and gets all of his therapy services during those times. I'm thinking he may need additional speech and ABA therapy outside of school. We will be meeting with the ABA therapist again on 5/19 to go over how he is doing in school and what else he needs at home or in the community. We've had some tough days this past week. He's been communicating more with words and showing us what he wants but at the same time his "episodes" as I call them have gotten worse again with getting very upset and for a good 45 mins. Again these aren't your regular 3 year old tantrums. Don't even feel like getting into them right now but it's not fun. I'm tired and warn out every night and that's still with him going to school for the 5 hours a day. One day we'll get a nice vacation or a day off but for now I'm happy to still be home and here for him when he needs me!
We've been putting a lot of work into his EOS fundraiser on 5/19. It should be a great turnout and I can't wait!!
Thanks for reading and trying to keep up!
Wednesday, March 9, 2011
6th scope
Have ALOT to update but for now...Sam had his 6th scope on Monday, 3/7 at MGH Boston. I have to say I was very impressed how Sam did before the scope. I actually went in with Steve this time to the procedure room and helped with putting him to sleep. It was tough but Steve said MUCH better than last time! We laid him back first to put the mask on which he ended up pulling off at one point (strong bugger)! Finally we all got quiet and I sang twinkle twinkle as he went out. He slept for a WHILE afterwards and woke up looking around followed by getting very upset. The nurse said this is actually very common with most kids until they are older and there's not much else we can do about it. He almost pulled the IV out and we finally just strapped him into the stroller and booked it out of there! Once we got the car moving he calmed down. He vomited a few times after drinking his formula and juice but was fine afterwards and napped 2 hours.
LOVE LOVE LOVE his GI doc and love that he does the scope every single time! We told him how he's hardly been eating so we shall see what the biopsies say. Probably won't know til Friday the results. I have a feeling they will be clear and this is just a phase he's going through with food. We shall see!
Thanks for listening and for your continued support!
Will update another time about changes coming up with Sam turning 3 on March 29th! He will be starting FULL day preschool through our town with services for speech, occupational therapy and ABA (applied behavioral analysis)! yikes!! He's not a baby anymore but will always be my baby!! xo
LOVE LOVE LOVE his GI doc and love that he does the scope every single time! We told him how he's hardly been eating so we shall see what the biopsies say. Probably won't know til Friday the results. I have a feeling they will be clear and this is just a phase he's going through with food. We shall see!
Thanks for listening and for your continued support!
Will update another time about changes coming up with Sam turning 3 on March 29th! He will be starting FULL day preschool through our town with services for speech, occupational therapy and ABA (applied behavioral analysis)! yikes!! He's not a baby anymore but will always be my baby!! xo
Monday, November 22, 2010
Wow it's almost 4 months since I've updated! Mama has been busy!
EOS and food- Sam's scope in August came back clear for any eosinophils! We got the go ahead to restart new foods again. He ate cucumber for a few days and it clearly gave him too much acid. He woke up a few nights vomiting and we stopped that. Bummer since he really loved them!!! Started apples again and he's been doing well with those. He's also now eating freeze dried strawberries, red grapes, cantaloupe, and cape cod potato chips along with banana and carrots which he was already eating. He still only eats 2 x a day and small amounts. We tried sweet potato fries with him a few days and he loved them but then he got a cold. Need to try those again along with regular potatoes for fries, mashed or roasted. Going to try turkey with him for this thanksgiving. He did love that so I'm hoping he still will and he doesn't have any reations! Working on cutting back his formula- he's still on EO28 splash and usually drinks 28-32 ozs. a day. We've had problems getting the splash approved again through insurance due to Sam's biopsies being clear, him gaining weight steadily (60th% now) and he's over 2.5 years old. Harvard Pilgrim denied it several times. We are now with Blue Cross Blue Shield of MA and I'm waiting on the approval from them. Thankfully we had some great friends, the GI doc and Nutricia themselves help us with formula and we've gotten a good supply at no cost. Each case cost $115 with no insurance and that's only 27 individual boxes which would last just over 6 days! Craziness! I need to check in with BCBS to see what the hold up is!!!
We finally got MassHealth Commonhealth supplemental insurance approved for Sam! That is a huge relief!! I originally applied for him back in April and kept getting denial letters. Finally got a contact (from another EOS mom) and got some much needed help with the disability portion of MH. We even got them to backdate the start of coverage day to April when it was finally approved in October! Waiting on some reimbursements now for co-pays we've made to docs and the pharmacy! Finally something good for us and we are very thankful!
ABA update- We changed ABA providers in September and are very happy with the 2 therapists. He receives 10 hours a week from them. They are a bit different than the last provider in that they don't do as much table work. They are able to run trials with whatever he is doing and even if we go out into the community to get him used to going to different playspaces. Next on my list is to visit a restaurant with him and the therapist.
Daycare- He has been going to daycare 3 mornings a week since September and does well for the most part. He's come a long way from when he first started. He tolerates the other kids being around him, sits for circle time, plays appropriately and even initiates some peer interaction. With the help of the ABA therapists we had the Providers start using PECS with Sam while he's there. He really thrives on a routine and knowing what's going to happen next. I think that's helped him and them out tremendously with less tantrums or frustrations. Some mornings I have to literally "drag" him out of the house to go but then I come back to pick him up and he doesn't want to leave. My goal for January is to try and get him to nap there but we shall see.
Speech- every day he has been saying new words, even little ones like "eye" and "toe" yesterday!! He has been repeating words upon request a lot recently or at least attempts to. His speech is still very delayed though and he hardly ever puts 2 words together besides "all done" or "go outside" for instance which he usually doesn't say either. He had a re-eval done by early intevention at 30 mths and he tested at 16-18 mths. It is hard at times hearing how behind he is to his peers and that we can't have even a small conversation with him. But we are confident that he will catch up with the continued services he gets at home and hopefully at the integrated preschool he will start at his 3rd birthday on 3/29/11. The 1st steps have begun for his evaluation which should take place between January and February.
Sam does continue to be a very bright, energetic and affectionate boy!!! He is the biggest mush ever and loves hugs and kisses! He loves being tickled, hiding under the blankets on the couch and playing with us, dancing, using his imagination to play with his stuffed animals (pretends his diapering them or cleaning them up), going shopping with his cart, bag and keys, loves coloring and playdough, puzzles, cars and trains and of course let's not forget he still LOVES watching Mickey Mouse Clubhouse and now Timmy Time!!! All he ever says is "Ickey or T" for Timmy!
As Thanksgiving approaches we are very thankful to have such a special child in our lives who makes us see what the important things are and makes us better people every day! Love him more than anything!!!
EOS and food- Sam's scope in August came back clear for any eosinophils! We got the go ahead to restart new foods again. He ate cucumber for a few days and it clearly gave him too much acid. He woke up a few nights vomiting and we stopped that. Bummer since he really loved them!!! Started apples again and he's been doing well with those. He's also now eating freeze dried strawberries, red grapes, cantaloupe, and cape cod potato chips along with banana and carrots which he was already eating. He still only eats 2 x a day and small amounts. We tried sweet potato fries with him a few days and he loved them but then he got a cold. Need to try those again along with regular potatoes for fries, mashed or roasted. Going to try turkey with him for this thanksgiving. He did love that so I'm hoping he still will and he doesn't have any reations! Working on cutting back his formula- he's still on EO28 splash and usually drinks 28-32 ozs. a day. We've had problems getting the splash approved again through insurance due to Sam's biopsies being clear, him gaining weight steadily (60th% now) and he's over 2.5 years old. Harvard Pilgrim denied it several times. We are now with Blue Cross Blue Shield of MA and I'm waiting on the approval from them. Thankfully we had some great friends, the GI doc and Nutricia themselves help us with formula and we've gotten a good supply at no cost. Each case cost $115 with no insurance and that's only 27 individual boxes which would last just over 6 days! Craziness! I need to check in with BCBS to see what the hold up is!!!
We finally got MassHealth Commonhealth supplemental insurance approved for Sam! That is a huge relief!! I originally applied for him back in April and kept getting denial letters. Finally got a contact (from another EOS mom) and got some much needed help with the disability portion of MH. We even got them to backdate the start of coverage day to April when it was finally approved in October! Waiting on some reimbursements now for co-pays we've made to docs and the pharmacy! Finally something good for us and we are very thankful!
ABA update- We changed ABA providers in September and are very happy with the 2 therapists. He receives 10 hours a week from them. They are a bit different than the last provider in that they don't do as much table work. They are able to run trials with whatever he is doing and even if we go out into the community to get him used to going to different playspaces. Next on my list is to visit a restaurant with him and the therapist.
Daycare- He has been going to daycare 3 mornings a week since September and does well for the most part. He's come a long way from when he first started. He tolerates the other kids being around him, sits for circle time, plays appropriately and even initiates some peer interaction. With the help of the ABA therapists we had the Providers start using PECS with Sam while he's there. He really thrives on a routine and knowing what's going to happen next. I think that's helped him and them out tremendously with less tantrums or frustrations. Some mornings I have to literally "drag" him out of the house to go but then I come back to pick him up and he doesn't want to leave. My goal for January is to try and get him to nap there but we shall see.
Speech- every day he has been saying new words, even little ones like "eye" and "toe" yesterday!! He has been repeating words upon request a lot recently or at least attempts to. His speech is still very delayed though and he hardly ever puts 2 words together besides "all done" or "go outside" for instance which he usually doesn't say either. He had a re-eval done by early intevention at 30 mths and he tested at 16-18 mths. It is hard at times hearing how behind he is to his peers and that we can't have even a small conversation with him. But we are confident that he will catch up with the continued services he gets at home and hopefully at the integrated preschool he will start at his 3rd birthday on 3/29/11. The 1st steps have begun for his evaluation which should take place between January and February.
Sam does continue to be a very bright, energetic and affectionate boy!!! He is the biggest mush ever and loves hugs and kisses! He loves being tickled, hiding under the blankets on the couch and playing with us, dancing, using his imagination to play with his stuffed animals (pretends his diapering them or cleaning them up), going shopping with his cart, bag and keys, loves coloring and playdough, puzzles, cars and trains and of course let's not forget he still LOVES watching Mickey Mouse Clubhouse and now Timmy Time!!! All he ever says is "Ickey or T" for Timmy!
As Thanksgiving approaches we are very thankful to have such a special child in our lives who makes us see what the important things are and makes us better people every day! Love him more than anything!!!
Wednesday, August 4, 2010
I can't believe tomorrow, 8/5 marks one year ago that Sam went under for his 1st Endoscopy which gave him the dx of EE!
On 8/16 he will have a baseline scope and biopsies to make sure all is clear before starting new trials. 1 year later and he still can only eat 3-4 foods. We still have such a LONG road ahead of us! We haven't trialed any foods since March when we took a break to clear him up and switched both GI and Allergy docs. Not sure what foods we are going to try first but I do know we are going to do it very slowly this time, no rushing and making sure he's done having reactions before starting another trial. We have learned so much these past few months.
I would like to try cucumber and rice pasta with him again since he loved those so much. We stopped them because he was still getting sick OFTEN but was scoping clean. It could have been the reflux pain that was still making him sick. That is well under control now with him on Nexium 2x a day, and zyrtec. I think he only had 6-8 "painful episodes" in July compared to 12 the previous months.
ABA update- Sam continues to do very well with his ABA therapist. It's been almost 4 mths now. He masters each new "trial" she gives him either that day or within a few days. We were going to add on 2 sessions in the afternoon but I think it would be too much for him and don't think he needs additional "table work". I do think he needs a weekly Occupational therapy session and will talk with our coordinator from EI next week (she's on vaca now). He still gets upset when going to places that he does not know and is only happy when he's in a swing. I think weekly OT sessions will help this and give us further tools to use with him at home every day. I have been giving him a quick sensory input before leaving the house for daycare now.
Daycare- It's been 1 mth and Sam is doing MUCH better at daycare. He went from having awful dropoffs with crying and vomiting 3 x to this week NO crying when I dopped him off and him getting excited upon arrival to the providers house. He has gotten upset when his ABA therapist leaves at the end of her session but settles down after 15-20 mins. I'm so proud of him and hope he continues to thrive and become more comfortable with being there.
Speech- he continues to say the same few words consistently- all done, no, dada, outside, T for tv, Ickey for Mickey, car, key, door. He signs "more" and "want". He calls me "Sacey" but is starting to say Mamamama so hopefully that will change soon. Speech sessions have taken off slowly between sick cancellations we had and doc appts. This week he has speech 2x and the same next week. Hoping that will help him take off with what is on the tip of his tongue!!
I think that's it for now. Thank you for keeping up with us. This last year has been ROUGH, getting better but still challenging every day. Having an EE and PDD child is a tough combo! I'm so glad to have some great supportive Moms out there who know exactly what we are going through! Love ya all!
On 8/16 he will have a baseline scope and biopsies to make sure all is clear before starting new trials. 1 year later and he still can only eat 3-4 foods. We still have such a LONG road ahead of us! We haven't trialed any foods since March when we took a break to clear him up and switched both GI and Allergy docs. Not sure what foods we are going to try first but I do know we are going to do it very slowly this time, no rushing and making sure he's done having reactions before starting another trial. We have learned so much these past few months.
I would like to try cucumber and rice pasta with him again since he loved those so much. We stopped them because he was still getting sick OFTEN but was scoping clean. It could have been the reflux pain that was still making him sick. That is well under control now with him on Nexium 2x a day, and zyrtec. I think he only had 6-8 "painful episodes" in July compared to 12 the previous months.
ABA update- Sam continues to do very well with his ABA therapist. It's been almost 4 mths now. He masters each new "trial" she gives him either that day or within a few days. We were going to add on 2 sessions in the afternoon but I think it would be too much for him and don't think he needs additional "table work". I do think he needs a weekly Occupational therapy session and will talk with our coordinator from EI next week (she's on vaca now). He still gets upset when going to places that he does not know and is only happy when he's in a swing. I think weekly OT sessions will help this and give us further tools to use with him at home every day. I have been giving him a quick sensory input before leaving the house for daycare now.
Daycare- It's been 1 mth and Sam is doing MUCH better at daycare. He went from having awful dropoffs with crying and vomiting 3 x to this week NO crying when I dopped him off and him getting excited upon arrival to the providers house. He has gotten upset when his ABA therapist leaves at the end of her session but settles down after 15-20 mins. I'm so proud of him and hope he continues to thrive and become more comfortable with being there.
Speech- he continues to say the same few words consistently- all done, no, dada, outside, T for tv, Ickey for Mickey, car, key, door. He signs "more" and "want". He calls me "Sacey" but is starting to say Mamamama so hopefully that will change soon. Speech sessions have taken off slowly between sick cancellations we had and doc appts. This week he has speech 2x and the same next week. Hoping that will help him take off with what is on the tip of his tongue!!
I think that's it for now. Thank you for keeping up with us. This last year has been ROUGH, getting better but still challenging every day. Having an EE and PDD child is a tough combo! I'm so glad to have some great supportive Moms out there who know exactly what we are going through! Love ya all!
Thursday, July 1, 2010
Long week of going into Boston this M, W and Th. for allergy skin patch test. Monday he got 24 skin patch put on his back. These are little tiny flat disc with food in them to test for a delayed allergic reaction. They are taped onto the back and are taken off 48 hours later. Today we met with Sam's Allergy doc who looked at his back again. The skin patch results show "slight" reactions to chicken, oat and peanut! Those will be the last on the list of foods to trial when we start new foods again! The chicken makes ALOT of sense as everytime we gave him chicken with rice pasta he would get sick and we kept thinking it was the rice pasta!
Will be setting up a date for a baseline scope in about 6 weeks- mid August. If the scope and biopsies are clean we will began to introduce new foods again. Will meet with docs and nutritionist to discuss after the scope.
I found a GREAT home daycare center for Sam where he will be starting 2 mornings a week soon with the plan of increasing to 2 full days. One of my friend's daughters goes to the center as well so that may be helpful to Sam. We have been doing weekly visits 2x to get him used to going there and hope to leave him for an hour in the next week to see how he does before leaving him for a morning!
Sam has been doing EXCELLENT with his ABA therapy sessions. He's able to sit at the table and "work" for most of the session with short breaks in between and I'm able to stay in the other room or even upstairs to get some other things done. yay! His vocabulary is blossoming with the consistency of car, keys, outside (mostly), all done, oh no, uh oh, dada, kiki for mickey and probably a few others I'm forgetting. He says these words in the right context and associates objects correctly. Ex: while visiting the new daycare center- after playing there for a while he says "all done", walks over to the gate and says "car"! yay! I knew my child was smart! lol!! We are very proud of his hard work these last few mths and are excited to see him continue to grow and learn more!!!
Thank you for checking in!
Will be setting up a date for a baseline scope in about 6 weeks- mid August. If the scope and biopsies are clean we will began to introduce new foods again. Will meet with docs and nutritionist to discuss after the scope.
I found a GREAT home daycare center for Sam where he will be starting 2 mornings a week soon with the plan of increasing to 2 full days. One of my friend's daughters goes to the center as well so that may be helpful to Sam. We have been doing weekly visits 2x to get him used to going there and hope to leave him for an hour in the next week to see how he does before leaving him for a morning!
Sam has been doing EXCELLENT with his ABA therapy sessions. He's able to sit at the table and "work" for most of the session with short breaks in between and I'm able to stay in the other room or even upstairs to get some other things done. yay! His vocabulary is blossoming with the consistency of car, keys, outside (mostly), all done, oh no, uh oh, dada, kiki for mickey and probably a few others I'm forgetting. He says these words in the right context and associates objects correctly. Ex: while visiting the new daycare center- after playing there for a while he says "all done", walks over to the gate and says "car"! yay! I knew my child was smart! lol!! We are very proud of his hard work these last few mths and are excited to see him continue to grow and learn more!!!
Thank you for checking in!
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