Tuesday, April 12, 2011
Awe
My son, actually both of my son's have impressed me all along. They are sweet, funny and exceptionally smart little boys. Trey is 2.5 going on 20 so everything he says is super funny but by now we expect the unexpected from him. Nash on the other hand is still learning to put words together but he is so incredibly smart and intuitive it amazes me everyday. As we know he reads and does simple math and counts by hundreds, 2's, 10's singles etc. etc. Knows his months, days, colors, shapes etc. It's more than just these skills though because he is putting it all together it's not just memorization. He is a problem solver and his wheels are turning all the time. Speech and eating are still are biggest challenges but what amazes me is that each day they become less of a challenge. Yes probably equivalent to a grain of sand but those add up and what it is adding up to is an amazing little boy. His teachers and therapists constantly praise him and even on days that nothing major happens they still say how great he is doing. Everyone sees the progress and as his proud mommy it is a wonderful feeling. In general gross motor activities weren't his favorite. He much preferred going on the swings to any climbing activities. Today in therapy instead of climbing we had him ride his tricycle and his scooter. I had no idea how it would go as it's been a long time since we played outside and again this was not his idea of fun playtime. Not once did he try to go on the swings! He loved alternating between the bike and the scooter and put one foot on the scooter and pulled himself along with the other foot for almost an entire hour! When I went back outside to check on them he said "hi mom" "my bike". I mean... no words for this one. Watching him partake in this was amazing, but hearing him talk about it and want to share it like hey mom I'm riding my bike", was unreal. He is moving fast and like everyone on his team reminds me daily, just because he isn't spouting out the sentences just yet, doesn't mean it all isn't going on in his head. He's such an awesome kid. I'm SO lucky that he's mine! That they both are mine!
Tuesday, March 29, 2011
Decisions...decisions....
I say at least once a week that I have had to make more decisions in the past 4 years of my sons life, on his behalf, than I had to make for myself in the entire first 18 years of my own life!
We went to our developmental pediatrician this past week and I typically say before we get there, that I'm just going to brag.. Of course I want input and opinion but I know how well my little man is doing so I love to go show the person who set us on our path from the start. The visit went great as usual but of course we are still not at our ultimate destination. One thing that was unexpected was that he didn't love all of my programming choices for next school year. Keep in mind this kids "programs" are more than many famililes with 3 children combined, participate in so yes he liked most of my choices but was afraid that I made one choice that wasn't perfect. It didn't hurt my feelings because he tells me each time how wonderful my choices are and how amazingly well they are paying off. What it did do was send my mind into a frenzy. MORE DECISIONS. I'm now left to ponder more choices for next school year but I'm glad that we have summer just about figured out and that even though it feels like fall is next month because of the pre-planning that is required, it really is only march! I still have to make typical kid/mom decisions for Trey like is he enjoying basketball or drum class (no and no!). He loves doing these activities on his time but not ready for the commitment. It's much easier though with Trey to know that he isn't into it cause he either shows his feelings clear as day or flat out tells me. With Nash it's still a bit of a guessing game but guess on I must. Seems to be working just fine :).
We went to our developmental pediatrician this past week and I typically say before we get there, that I'm just going to brag.. Of course I want input and opinion but I know how well my little man is doing so I love to go show the person who set us on our path from the start. The visit went great as usual but of course we are still not at our ultimate destination. One thing that was unexpected was that he didn't love all of my programming choices for next school year. Keep in mind this kids "programs" are more than many famililes with 3 children combined, participate in so yes he liked most of my choices but was afraid that I made one choice that wasn't perfect. It didn't hurt my feelings because he tells me each time how wonderful my choices are and how amazingly well they are paying off. What it did do was send my mind into a frenzy. MORE DECISIONS. I'm now left to ponder more choices for next school year but I'm glad that we have summer just about figured out and that even though it feels like fall is next month because of the pre-planning that is required, it really is only march! I still have to make typical kid/mom decisions for Trey like is he enjoying basketball or drum class (no and no!). He loves doing these activities on his time but not ready for the commitment. It's much easier though with Trey to know that he isn't into it cause he either shows his feelings clear as day or flat out tells me. With Nash it's still a bit of a guessing game but guess on I must. Seems to be working just fine :).
Friday, February 18, 2011
Updates.....as in, where we are today..
was thinking.. I haven't really said where we are, what we are working on etc... At the beginning I had a list.. a super long list. I knew every single thing we needed to work on, I knew that he would put every.single.thing in his mouth and needed to stop that. I knew that he didn’t receptively understand language; I knew that he was a picky eater (not textures or flavors but just limited to random selections that he chose). On and on I knew. Then some time last year I said to his therapists, "I feel like no one is driving his ship", meaning no one person or theme is in charge of his direction and progress. I realized it was because our goals were now more abstract. All of the little quirks are worked out, all of the blatantly noticeable differences are not there anymore. I used to hate going to the grocery store because he wouldn't respond to the cashiers "hello" even with eye contact or a head turn. Now we have "hi" which I begged for, dreamed about etc. etc. Now I have it and of course I'm greedy, now I want full, functional sentences! N isn't clumsy anymore and doesn't fall when a surface becomes uneven as he walks. He can climb up and through things and play functionally on a playground. Rock wall maybe not yet but hey. He no longer eats mac and cheese which I let him food jag on but didn't know enough back then about re-introducing it a short while later so it's now a maybe some day food. Basically we are working on adding more foods to his current variety which includes pretzels, pretzel fish, mandarin oranges, cheese pizza (still round pizza but working on deep dish) American cheese (took his therapists 1 yr) bananas, candy, milk and that is basically it. As of lately he has added applesauce in several flavors and yogurt. Very exciting! Kid will eat a booger but no chicken ;). We are working on expanding his language from just single words (he knows millions of words) to 2,3 and 4 word phrases. He has started requesting preferred items and finally is able to choose from two verbal choices vs visual choices. When he sees things it is easier for him to understand but auditory abilities are emerging nicely. N stays engaged in activities with others for longer periods of time and this continues to expand. He will no engage in activities that are not only his preferred choices and responds consistently to others. As far as making friends, language is a huge part of this process but the kids in his typical class love him and he loves other kids you can tell by body language etc, but he does not yet know how to interact with them .This is also emerging. N is extremely smart and is doing Kindergarten work at 4 years old. He is reading simply words and can do simple math. He loves to spell words and guess words that you spell for him. Our team agrees that once language and speech are perfected we will have limited challenges. We don't know yet exactly how he will learn but based on how smart he is already with basic academics, the outlook is good. We still have speech twice a week, OT twice a week and music once a week as well as a play session once a week. We have mixed it up many times with therapists and currently have an almost perfect team. We may shake it up once more but the great thing is that N is so easy going and loving, that he easily adjusts to new situations and people. We know we are lucky and that our we are able to work on our challenges and help N grow. N's personality is such a wonderful asset to him because everyone loves him almost instantly. I'm excited to see more progress and watch him grow.
Thursday, February 17, 2011
Shout outs and pats on the back...
N has an inclusion shadow at the typical preschool he attends on Thursday and Friday each week. She is so wonderful and after pick up today I decided she really deserves a should out! We got super lucky when they assigned Katie to us and we just found out that she will also be ours for the entire summer 5 mornings a week while he goes to camp at the same place. She is an OT student which is just an added perk but just the way the she is with him and her eagerness to let him try things on his own and become independent really make her amazing. We are so lucky! Also, leading into pat on the back but one more quick shout out first.. N swims every Thursday at the same preschool. It's an amazing feature they offer and he adores the pool. They have a whole routine set up for him and he is doing great with his lessons. My younger son is having a hard time when his teacher takes him to his swim class on Wednesdays. He likes to swim with us but for some reason has cried the last 2 weeks since he started and refuses to go in. Here is the pat on the back part... after a long day of carting kids to preschool and therapy and running my business etc, etc. I picked up my nephews and packed my boys bathing suits and took them right over to the same pool. All 4 boys went swimming for an hour and played together. I went and asked the instructor who N loves but T is afraid of, if she would stop by and say hi while we were playing in the pool. Here is the shout out part.. Rhonda came over and saw that N was in the play side of the pool and first brought over a barbell and made N show us his skills. She had him climb to the swim side and take his barbell and next thing I know my kid is swimming everywhere all by himself! She is working on taking the barbell away and says it will happen by the summer! She is amazing! On top of how much N loves her and how grateful we are for teaching us such a priceless skill (everyone should learn to swim) she managed to win T over by the end of the visit and now he is excited for his Wedneday class! I pat my exhausted self on the back but I suppose I was really just the driver in all this. Just drove them to the location ;)
Tuesday, February 15, 2011
So now I'm caught up
I have posted all the posts from my old blog and now one year and one month since my last post I think I'll do a summary of where we are and then I will update much more frequently.
N turned 4 in December. He is doing amazingly well in school and therapy and talking tons more. He spells, knows numbers, letters, can count to 100 by ten's, count in spanish, taught himself to play 3 video game handheld systems (we had to quit cold turkey they were too consuming). He is stringing words together and is requesting spontaniously. The more motivated he is the more the words come so "chocolate ball" or "milk" come out often. As I've always said, I'm greedy and want full sentences and initiation. Truthfully, I am amazed and inspired by the progress my hard working boy has made. He was sick for almost a month (we all were with this and that) and now that he is healthy he plunged forward even more. We are still in the special needs preschool 3 days and my dream goal for June is to qualify for the next step up special needs class but if not we will be just fine. 2 days a week N is at a local preschool with an inclusion support counselor. She is awesome and an OT student so we got very lucky. ( N is in the other room with hubby spelling words. Not Dog but Apple,toes, shirt, paper, etc.) The kid is smart. Really, really smart! We just started with a brand new slp and started back with one of our first slp's and I'm super excited about both. They are getting him at a great time as he is really ready to grasp this language thing! We have 2 OT's and one music therapist. 6 days N is in some type of therapy aside from our time together during all free moments. He also has started eating new things like american cheese that took one year to get him to eat and yogurt which he grabbed out of the fridge yesterday and just scarfed down. Shock and excitement all around! We are happy and love that 3 days a week we have therapy in the house. It is still a flat out fortune to pay for these required services and still plan to make a difference, someday when I have a little spare time ;).
N turned 4 in December. He is doing amazingly well in school and therapy and talking tons more. He spells, knows numbers, letters, can count to 100 by ten's, count in spanish, taught himself to play 3 video game handheld systems (we had to quit cold turkey they were too consuming). He is stringing words together and is requesting spontaniously. The more motivated he is the more the words come so "chocolate ball" or "milk" come out often. As I've always said, I'm greedy and want full sentences and initiation. Truthfully, I am amazed and inspired by the progress my hard working boy has made. He was sick for almost a month (we all were with this and that) and now that he is healthy he plunged forward even more. We are still in the special needs preschool 3 days and my dream goal for June is to qualify for the next step up special needs class but if not we will be just fine. 2 days a week N is at a local preschool with an inclusion support counselor. She is awesome and an OT student so we got very lucky. ( N is in the other room with hubby spelling words. Not Dog but Apple,toes, shirt, paper, etc.) The kid is smart. Really, really smart! We just started with a brand new slp and started back with one of our first slp's and I'm super excited about both. They are getting him at a great time as he is really ready to grasp this language thing! We have 2 OT's and one music therapist. 6 days N is in some type of therapy aside from our time together during all free moments. He also has started eating new things like american cheese that took one year to get him to eat and yogurt which he grabbed out of the fridge yesterday and just scarfed down. Shock and excitement all around! We are happy and love that 3 days a week we have therapy in the house. It is still a flat out fortune to pay for these required services and still plan to make a difference, someday when I have a little spare time ;).
So much accomplished (Jan 2010)
It's been so long since I've updated that it's almost overwhelming to try to recap all that has changed and been achieved in the past several months. Somewhere in there we switched our speech therapist and started special needs preschool. 5 days a week 3 hours a day and what an amazing program and staff. We noticed changes from the first day and continue to still. Since N has school every morning we have had to switch therapy to the afternoon's and with nap etc it's hard. Little brother has sort of an unfair deal with spending his whole day in the car or a waiting room. I only hope that he is OK with anything he missed out on later, knowing that he traded some things so that he could have a perfect brother. We are in speech 2 days per week and ot 2 days, play tutor and volunteer time the other days and music therapy just started. The plate is full but the results are major. Insurance cut off several months before last year ended and it was extremely difficult to pay out of pocket but happy to say Jan 1 has come and insurance starts over. Too bad his new slp who I adore does not take insurance, is one of the highest in town and I want to add a 2nd day with her. Money isn't a factor in this game though it just appears when it's needed to help get him caught up.
N is labeling a ton, he has cut back since he was saying more but his engagement is through the roof and he is completely in tuned with and aware of others around him. Everyone on his team has noticed this difference. It's amazing to experience it. He laughs at my silly dances or his aunts little clapping peek a boo games. He likes doing photo shoots of his wind up toys with my cell phone and viewing the pictures later. His receptive language has come so drastically far that today when his slp said that he is so far ahead receptively,I almost fell off of my chair. This the kid who was 2 yrs behind when he was only 18 mos old!! Today his slp put random pictures on the floor and gave him duplicates to match them up. He completed this task, followed other simple commands and engaged completely in her games with very minimal disinterest. The whole time I'm thinking to myself, what would I have done for any or all of this a year and a half ago when we started this mission.
I know where we are going and know that we have a long road ahead but can't believe we are actually here. The teachers and therapists still run out to tell me about the wonderful things he did that day and they all say so what if he is taking his time learning to talk, he is engaged and in to people and social and amazing. So many people lately have said there is so much in there we just need to get it out here. I describe it by saying that it's finally coming through we just have a slow leak. They all agree. I adore the new speech therapist and her techniques. She has worked with some of the kids I know with the best success stories and that alone makes it fun to get her input but her ideas are just so creative and effective and I'm excited to watch her get the results.
This is such an amazing kid who has come so far and has already made me so proud. I tell him every night that he's the perfect son for me. Even his pretend play skills are evolving and he is aware of and often annoyed with his baby brother. His brother is by far the best therapy I ever could have gotten for him. I should rent him out by the hour. This summer I will put him in a regular pre school camp that has an aide for special needs kids. I wouldn't be suprised but would be thrilled if he did so well that he didn't need his aide, or even if he didn't need her next yr. We aren't ready to potty train, his body isn't ready anyway, so the aide needs to be there for diapers at least. I always say that I cried hysterically at his first birthday , his 2nd I was proud and excited with progress his 3rd I was amazed and his 4th he's going to sing happy birthday with us. The expectation is that by his 5th he will be "there". How well rounded this kid will be because of all of his interventions. That 5th party will be a blow out bash!
I'm so grateful that we chose the path we did and the therapists and team we have are so invested in this. I have no doubt about our future and I'm anxiously waiting the arrival of language. Functional language where he can tell me what he wants and needs. This road is long and rough and some days (especially the last 2 where he is up for 3 hr stretches at a time over night) are harder than others but the progress and the possibilites are unbeliveable. I can't wait to see where this path ends and where the new one begins
N is labeling a ton, he has cut back since he was saying more but his engagement is through the roof and he is completely in tuned with and aware of others around him. Everyone on his team has noticed this difference. It's amazing to experience it. He laughs at my silly dances or his aunts little clapping peek a boo games. He likes doing photo shoots of his wind up toys with my cell phone and viewing the pictures later. His receptive language has come so drastically far that today when his slp said that he is so far ahead receptively,I almost fell off of my chair. This the kid who was 2 yrs behind when he was only 18 mos old!! Today his slp put random pictures on the floor and gave him duplicates to match them up. He completed this task, followed other simple commands and engaged completely in her games with very minimal disinterest. The whole time I'm thinking to myself, what would I have done for any or all of this a year and a half ago when we started this mission.
I know where we are going and know that we have a long road ahead but can't believe we are actually here. The teachers and therapists still run out to tell me about the wonderful things he did that day and they all say so what if he is taking his time learning to talk, he is engaged and in to people and social and amazing. So many people lately have said there is so much in there we just need to get it out here. I describe it by saying that it's finally coming through we just have a slow leak. They all agree. I adore the new speech therapist and her techniques. She has worked with some of the kids I know with the best success stories and that alone makes it fun to get her input but her ideas are just so creative and effective and I'm excited to watch her get the results.
This is such an amazing kid who has come so far and has already made me so proud. I tell him every night that he's the perfect son for me. Even his pretend play skills are evolving and he is aware of and often annoyed with his baby brother. His brother is by far the best therapy I ever could have gotten for him. I should rent him out by the hour. This summer I will put him in a regular pre school camp that has an aide for special needs kids. I wouldn't be suprised but would be thrilled if he did so well that he didn't need his aide, or even if he didn't need her next yr. We aren't ready to potty train, his body isn't ready anyway, so the aide needs to be there for diapers at least. I always say that I cried hysterically at his first birthday , his 2nd I was proud and excited with progress his 3rd I was amazed and his 4th he's going to sing happy birthday with us. The expectation is that by his 5th he will be "there". How well rounded this kid will be because of all of his interventions. That 5th party will be a blow out bash!
I'm so grateful that we chose the path we did and the therapists and team we have are so invested in this. I have no doubt about our future and I'm anxiously waiting the arrival of language. Functional language where he can tell me what he wants and needs. This road is long and rough and some days (especially the last 2 where he is up for 3 hr stretches at a time over night) are harder than others but the progress and the possibilites are unbeliveable. I can't wait to see where this path ends and where the new one begins
A moment of reflection (old post)
Life is exhausting and trying right now. You have a special needs child that should be your max quota of trials but instead you get to deal with insurance and lack of funds etc. The payoff though is the constant and wonderful changes we get to see in our baby boy, every single day. Life is hard but its good. Let it get even better
As of lately (june 09)
These past few weeks have been hard for me. Sad and hard..
I thought I was being proactive. I really thought I was making a great choice. I knew I had 6o combined visits for speech, ot and pt. I want more. Lets be real, 2 visits of speech per week and one OT hardly gets you to the end of the year if you only have 60. I want PT and my 2nd OT visit each week, where does this get me? March>?! I did the work, I had wonderful letters written by our therapists, I gathered all of the reports, I wrote a wonderful letter. The appeal was solid. 31 days after they received my submission they told me they needed more items and only after I called in several times asking for an update. I got everything in immediately. 20 days later after I called in so mannnny times because my representative from hell told me time and again that she would call me for updates or on specific days, only to be out that day or just not call or take my call, I finally got through. She had an answer back from the RN which I had learned from a customer service supervisor who finally took my 999th call. She said I have an answer, it's on my desk, but I can't read it, it's illegible. SHE TOOK 20 DAYS COULD SHE MAYBE HAVE TYPED IT OUT FOR HER?? It took 5 additional days to get the answer and when she did get it, she barely understood it enough to explain it to me. They re-requested RX's that I had provided just weeks before and then wanted a letter from my therapists or Dr. saying that since my visits are not exhausted yet, how do we know he will need more therapy. I said how do I know that my son who does not speak, won't speak the language fluently in 3 weeks time????? Just a flipping guess~!!!!!! I had the letter written and forwarded it on. I called in a bunch more times to see how it went. I knew it was going to the Medical Doctor specializing in speech. That made me happy, someone with a brain and a direct knowledge... I now know that said medical board that I originally pictured as a sophisticated group of professionals was simply a bunch of chimpanzees throwing fruit and paper around. This was a mind fu*k and a gut fu*k. The whole process was disgusting, my rep was disgusting her behavior and lack of communication and service but most of all what she said to me the one time she finally called.
I was waiting in the doctor's office for our appointment and she called and said, not only are we denying your appeal, but we are going to review every claim we have payed so far because your son is under the age of 6.WTF!!!! I told her how archaic that was and who in the world waits until 6?! child neglect anyone? She said a rep who works with my husbands office would contact me.. I said I'm not worried, I 'll go to court forever , we had pre-approval and our policy does not have an age description written in the verbiage. I had to go because we were called in for our appointment but when I tried to call later to find out exactly why we were denied, she wouldn't take the call saying that she was done with the case. I want to fax a blank page with only the word KARMA written on it because Karma is a bitch and I fear for her... If ever a Karma-gram was called for. Maybe I'll send her a pack of Karma-grams. I still haven't received a call from the rep or the letter stating our denial. It's clear to me and many others that she is mad at me and so this is her effort after the choice words I used on the day that I lost my cool. Nice of the other reps to share my words with her.. In hindsight I'm glad they did.
I decided though that our life is no longer on hold because of them . I set up our pt eval and she said that he is functioning at an 18 month level. Not awful but not great. I think she said it well when she said that no one has suggested pt to us because the other challanges are so much more in your face. I have set up a 2nd ot every other week on the opposite week of our every other pt. I found this amazing play tutor from a friend who met my son for 2.5 minutes but relayed a message through my sister who knows not much about all of this (*yuck) saying she knows this great gal. I didn't love that she knew after seeing him for so little time but like my dad so bluntly said ;) she has a ton of kids and if you don't think people can see it get with the program. ouch! He is very supportive and generally a bit more couth. Now that the burn has subsided, I think it was good to hear it even though I'm sure if I hadn't caught him in a stressful moment at the office, he woulld have said it much differently. The play tutor was WONDERFUL, I hired her twice a week. Packing it in this summer since there are zero camps in this town for anyone under 3. With my spare time some day in 20 yrs, maybe I'll start a camp for special needs under 3. speech at least! Not sure where the money is coming from for all of this and not sure what will be with insurance since M's HR rep has been working on it for us for going on 2 weeks and still can't get a call back, ( LOVE INSURACE CO'S) but if I have to work or cutback so be it. I 'm not letting them decide how well my son does. We got his schedule for early on school program next year and I can't wait until he starts! I've heard wonderful things.
He is sick yet again, basically 2 mos straight. Up all night last night. I'm ready for a new beginning and whoever is effing with my kid to leave him the eff alone!! I feel more together now and ready to deal. The broken collar bone, inhaler etc etc etc etc. It's hard enough having a kid with delays so I'm sick of the extras but I'm ready to take them all on now. Be even more ready after I sleep!
I thought I was being proactive. I really thought I was making a great choice. I knew I had 6o combined visits for speech, ot and pt. I want more. Lets be real, 2 visits of speech per week and one OT hardly gets you to the end of the year if you only have 60. I want PT and my 2nd OT visit each week, where does this get me? March>?! I did the work, I had wonderful letters written by our therapists, I gathered all of the reports, I wrote a wonderful letter. The appeal was solid. 31 days after they received my submission they told me they needed more items and only after I called in several times asking for an update. I got everything in immediately. 20 days later after I called in so mannnny times because my representative from hell told me time and again that she would call me for updates or on specific days, only to be out that day or just not call or take my call, I finally got through. She had an answer back from the RN which I had learned from a customer service supervisor who finally took my 999th call. She said I have an answer, it's on my desk, but I can't read it, it's illegible. SHE TOOK 20 DAYS COULD SHE MAYBE HAVE TYPED IT OUT FOR HER?? It took 5 additional days to get the answer and when she did get it, she barely understood it enough to explain it to me. They re-requested RX's that I had provided just weeks before and then wanted a letter from my therapists or Dr. saying that since my visits are not exhausted yet, how do we know he will need more therapy. I said how do I know that my son who does not speak, won't speak the language fluently in 3 weeks time????? Just a flipping guess~!!!!!! I had the letter written and forwarded it on. I called in a bunch more times to see how it went. I knew it was going to the Medical Doctor specializing in speech. That made me happy, someone with a brain and a direct knowledge... I now know that said medical board that I originally pictured as a sophisticated group of professionals was simply a bunch of chimpanzees throwing fruit and paper around. This was a mind fu*k and a gut fu*k. The whole process was disgusting, my rep was disgusting her behavior and lack of communication and service but most of all what she said to me the one time she finally called.
I was waiting in the doctor's office for our appointment and she called and said, not only are we denying your appeal, but we are going to review every claim we have payed so far because your son is under the age of 6.WTF!!!! I told her how archaic that was and who in the world waits until 6?! child neglect anyone? She said a rep who works with my husbands office would contact me.. I said I'm not worried, I 'll go to court forever , we had pre-approval and our policy does not have an age description written in the verbiage. I had to go because we were called in for our appointment but when I tried to call later to find out exactly why we were denied, she wouldn't take the call saying that she was done with the case. I want to fax a blank page with only the word KARMA written on it because Karma is a bitch and I fear for her... If ever a Karma-gram was called for. Maybe I'll send her a pack of Karma-grams. I still haven't received a call from the rep or the letter stating our denial. It's clear to me and many others that she is mad at me and so this is her effort after the choice words I used on the day that I lost my cool. Nice of the other reps to share my words with her.. In hindsight I'm glad they did.
I decided though that our life is no longer on hold because of them . I set up our pt eval and she said that he is functioning at an 18 month level. Not awful but not great. I think she said it well when she said that no one has suggested pt to us because the other challanges are so much more in your face. I have set up a 2nd ot every other week on the opposite week of our every other pt. I found this amazing play tutor from a friend who met my son for 2.5 minutes but relayed a message through my sister who knows not much about all of this (*yuck) saying she knows this great gal. I didn't love that she knew after seeing him for so little time but like my dad so bluntly said ;) she has a ton of kids and if you don't think people can see it get with the program. ouch! He is very supportive and generally a bit more couth. Now that the burn has subsided, I think it was good to hear it even though I'm sure if I hadn't caught him in a stressful moment at the office, he woulld have said it much differently. The play tutor was WONDERFUL, I hired her twice a week. Packing it in this summer since there are zero camps in this town for anyone under 3. With my spare time some day in 20 yrs, maybe I'll start a camp for special needs under 3. speech at least! Not sure where the money is coming from for all of this and not sure what will be with insurance since M's HR rep has been working on it for us for going on 2 weeks and still can't get a call back, ( LOVE INSURACE CO'S) but if I have to work or cutback so be it. I 'm not letting them decide how well my son does. We got his schedule for early on school program next year and I can't wait until he starts! I've heard wonderful things.
He is sick yet again, basically 2 mos straight. Up all night last night. I'm ready for a new beginning and whoever is effing with my kid to leave him the eff alone!! I feel more together now and ready to deal. The broken collar bone, inhaler etc etc etc etc. It's hard enough having a kid with delays so I'm sick of the extras but I'm ready to take them all on now. Be even more ready after I sleep!
Starting now (June 09)
I'm so excited to find that I can post from my phone! The past few weeks and specifically days, I have been trying to get into SECRET mode and really visualize what we need and want with this insurance outcome. I find that I'm still so putoff and angry with the people and the process I suffered through that that creeps up on me when I'm trying to be positive and ask for what we need and want. I have decided to think of "N" from now on when those thoughts creep up because that is the way for me to instantly smile from joy and move back to positive outlook and visualization. Here is what I'm asking for and believing we are getting and have because its the best thing for us and what we need. I'm not too spiritual but this is what.we.need!
H R will call me Monday and tell me that like she suggested last week, we simply need our therapy offices to re-bill our claims under a challenged child code somehow vs a preventative. This is not prevention its survival and we are treating delays. We will be able to go to OT twice per week and PT every other week because the coverage we need will be provided.
We will be covered continually for our therapy and so all we will pay for now is our PLAY tutor and that is well worth it.if you ask you receive and so this coverage to help get my son even further along than he already is and cover and pay for past,present and future therapy, is crucial and so I'm asking for the coverage and the support and for the very best outcome for our son. Asking and receiving!
H R will call me Monday and tell me that like she suggested last week, we simply need our therapy offices to re-bill our claims under a challenged child code somehow vs a preventative. This is not prevention its survival and we are treating delays. We will be able to go to OT twice per week and PT every other week because the coverage we need will be provided.
We will be covered continually for our therapy and so all we will pay for now is our PLAY tutor and that is well worth it.if you ask you receive and so this coverage to help get my son even further along than he already is and cover and pay for past,present and future therapy, is crucial and so I'm asking for the coverage and the support and for the very best outcome for our son. Asking and receiving!
When life gives ya lemons.. (original post June 09)
We finally got a call from HR today. The rep was really sweet and said we don't have to pay back all the old therapy ( relief) but we also don't get any additional visits (scary). Like my new friend DGG (Imjusthatway.com) says, most of us are spending our kids college fund and our parents retirement fund on our kids and their therapy. Seeing as how we don't have said fund set up, I had hoped for more coverage. Maybe after all of that awful appeal drama, this was a way to soften the blow of denial.
I'm blessed more than most. We don't want to pay for therapy nor do we want to have to go for that matter, but we certainly aren't about to cut back and so the generosity of my family is overwhelming. We don't want to take their money and we want to be able to swing it on our own until our year starts over. Our fingers are crossed for success and wealth between the two of us so we can do it on our own. Its indescribable though to know that they are there to catch us if we can't swing it. Blessed.
I'm blessed more than most. We don't want to pay for therapy nor do we want to have to go for that matter, but we certainly aren't about to cut back and so the generosity of my family is overwhelming. We don't want to take their money and we want to be able to swing it on our own until our year starts over. Our fingers are crossed for success and wealth between the two of us so we can do it on our own. Its indescribable though to know that they are there to catch us if we can't swing it. Blessed.
Sooo tired
It's just so much work. We have increased therapy for the summer and I'm so excited for the progress but it is only week one and I'm drained. We started brushing and cut out theraputic listening until we are done in a couple weeks. For once we have something with an end date. Everything else in our world is until its done..I love the changes I'm starting to see and the drastic ones I have seen all along but it is SO MUCH WORK!!
Its not only the driving, coordinating, particiating, childcare organizing, its also the walls you have to constantly walk into...
Since insurance ran out and our estimated date was off, I spent all my time waiting for their answer where in hindsight I wish I'd been applying for grants.
So far Elks club looks the most promising and they are such generous people. They have told me they are still unsure about how much they can give me but will do their best to help. No one else has said that! No one has meant it.
We submitted to the disabled children insurance or something on Monday but she didn't submit it for review until today, thursday so wait we must. 2 charities who seemed promising haven't responded to me and some of the organizations I have contacted,have representatives who literally scare me. They are all nice but so ignorant that its almost too much to take.
One referred me the local RDI freak who I had contaced months ago. His program wasn't for us and he was a flake. She also proceeded to tell me about the conputer that communicates for you. This after I explained that my VERBAL son needs speech therapy. One asked if I had heard of the play program. She meant the project so I asked her if she wanted me to spend an additional 390 per month. She thought they gave charity,,!? . That sucks!
As soon as I'm done getting my kid caught up I'm going to start a charity and raise money from here to forever because it is unnaceptable that ignorance is allowed to remain front and center. Too tired right now but not forever!
Its not only the driving, coordinating, particiating, childcare organizing, its also the walls you have to constantly walk into...
Since insurance ran out and our estimated date was off, I spent all my time waiting for their answer where in hindsight I wish I'd been applying for grants.
So far Elks club looks the most promising and they are such generous people. They have told me they are still unsure about how much they can give me but will do their best to help. No one else has said that! No one has meant it.
We submitted to the disabled children insurance or something on Monday but she didn't submit it for review until today, thursday so wait we must. 2 charities who seemed promising haven't responded to me and some of the organizations I have contacted,have representatives who literally scare me. They are all nice but so ignorant that its almost too much to take.
One referred me the local RDI freak who I had contaced months ago. His program wasn't for us and he was a flake. She also proceeded to tell me about the conputer that communicates for you. This after I explained that my VERBAL son needs speech therapy. One asked if I had heard of the play program. She meant the project so I asked her if she wanted me to spend an additional 390 per month. She thought they gave charity,,!? . That sucks!
As soon as I'm done getting my kid caught up I'm going to start a charity and raise money from here to forever because it is unnaceptable that ignorance is allowed to remain front and center. Too tired right now but not forever!
The way I see it
For us language is by far our most severe delay. We all agree that once language flows naturally the rest will more easily fall into place. My motto has become "functional with a side of sensory .I AM IN :) ".
Our Story
The somewhat condensed version (I'm still desperately sleep deprived 4 yrs into motherhood)
When my son was 10 months old it hit me. When do children respond to their name? I Googled it and every result scared me to death...
My delivery was normal and my son was a good baby for the most part except for his evening scream fest like every colicky baby. I rocked him to sleep every night and he loved his swing. He was never a good sleeper so starting at 3 weeks we would put him in his swing in front of the T.V with a Barney video. He was happy and we could go back to sleep for an hour since he was up most of the night every night. He would wake up to eat every two hours and would take an hour to eat. I cried every night saying I don’t want to see the clock anymore at 2 am. You get over that after you’re a mom a while longer. You just suck it up and drink your coffee ;). I rocked my son to sleep every night and eventually it had evolved into an intense rock, swinging motion. He literally got too heavy for me to do it but it was the only thing that worked. We eventually did a mild cry it out where I cried and he whined with a few tears. He finally was able to put himself to sleep but would still wake several times at night and often for several hours at a time.
One of the nights I had been rocking him in the middle of the night (this I did continue for a long time) he started humming. It was sort of a rhythmic hum. I thought that since I had stopped singing due to exhaustion, that he was seeking the vibration. We later learned this was not the case.
So at 10 months I realized my son was late to respond to his name so I started to try things at home. I would clap directly next to his ear, call his name, yell his name etc. He did not respond to any of these. We tried it with the TV on (which we had on often and he was obsessed with), with it off, and as many other variations we could think of. I was really starting to worry. I had this little nagging for months before and even made up a little lullaby about how perfect he was but this was the first real wake up call for me. At our 10 month check up I mentioned my concerns to our doctor who has always been very supportive of us. He said he saw what I was referring too but that he could just be very interested in what he is doing. He was flipping through a board book while the doctor yelled, danced and clapped his hands so loudly that the patients in the next room likely heard. He never even glanced up. Our doctor said that we should watch it and we would keep up on his progress. At this time I also expressed my concerns about my son’s speech development or lack thereof. I explained that everyone keeps telling me he will talk but it wasn’t the speech factor that worried me, it was the fact that I knew my son did not understand me. I said I don’t care when he talks, I care that he doesn’t have any idea what I am saying to him.
At his 12 month checkup my doctor was out of town and we saw his partner. She told me that if he wasn’t using Mama and Dada with intent than he was delayed. Another layer of sick worry added to my load. He had babbled Mama and Dada around 8 or 9 months and still babbled other sounds but not those anymore. I cried the entire morning of my sons 1st birthday. I was having a house full of people and hated that I worried that my son would be judged. I knew in my heart something was wrong but hated every minute of knowing. I spoke to the nurse at my doctor’s office and she was so kind and understanding and did her best to reassure me that every child is different and that he is just fine. I made an appointment to follow up with my own doctor after how awful I felt after leaving my appointment with the partner. My son had developed motor wise, pretty much but a family friend had a baby a few weeks after I had my son and she was doing all kinds of things.. It was a hard day.
My son walked at 13 months but one day we were at lunch and everyone wanted him to waive bye-bye. He looked at them like they were crazy. I kept saying I have never worked with him on that. Honestly I blamed myself for any delay I came across thinking I was supposed to spend time on that skill, my husband blamed T.V. Now that I have a second child I realize that they pick up those things on their own and we were not responsible.
I met with our doctor again around 12 months and we decided to take action. He said we can still wait but that he knows me and knows that I don’t sit still very well so let’s get rolling. He still was optimistic that everything was fine. He suggested it was possibly an IQ issue. We also later learned that it was the opposite IQ issue than he originally thought. (We have a super smarty pants ;) ). He referred me to a doctor nearby saying that the top doc in town was higher priced and to go meet with this one first. After speaking to him on the phone I decided to start at the head instead and called my pediatricians office back for the top dog’s number. They ended up giving me an old phone number for a doctor no longer practicing by mistake so after many wrong numbers and referrals I ended up with a referral to a local hospitals early development center.
The developmental pediatrician we met with there was highly recommended and she was a great first step for us. My son had a particularly quirky day the day of our visit and oddly he never had done many of the things he did that day, before. He had a laughing jag that morning which he has only done one other time and it was after the appointment. A few doctors have said that he was likely thinking of something funny as he didn’t do this for very long. He felt and rubbed the walls in the office, she rang a bell in his ear and he didn’t respond and he was hyper focused on the design in the carpet. He was lying on his tummy and we put objects or snacks right beside him or directly in his line of vision and he did not acknowledge them or us at all. The doctor said that she didn’t want to diagnose because he was so young (15 months at this time) but that he definitely had a severe speech and language delay. She told us to call the local Early Intervention program and to take him for a hearing test. Also, she told us to take him for a speech evaluation.
The hearing test was the most traumatizing experience ever. We did run over to an ear doctor who happened to have a deaf daughter, while we were going through this process and he assured us that he really didn’t think that hearing was the issue. This was bitter sweet news. We went and had a hearing test where they put him in a room and turn on little toys with sounds and call sounds through speakers to see if he will respond. He did poorly in this phase so they referred him for the more intense test. This was where the trauma began. They advised us to get the test at the children’s hospital where they have you drink a liquid and it puts you to sleep. I couldn’t imagine how I was going to get my picky eater to drink this random substance but also I didn’t want him to go under. I was sick with anxiety. I called the other hospital where the first test was performed and they agreed to try to do it after I rocked him to sleep. He had to be completely still for this test but since he didn’t know what I was saying I couldn’t just say sit still. The day of the test my dad came with me and the two of us spent over an hour trying to get him to sleep. Stroller walks, rocking, milk etc. We were drenched with sweat but we finally did it. We quietly rolled the stroller into the room where the tech had to put probes all over his head and in his ears. She took the cream, put it on one of the metal pieces to be placed on my sons head, and rubbed it as hard as she could while shaking him. He woke up instantly. I still could cry when I think about this. She did the part of the test she could do with him awake and eating a sucker since he was hysterical and we left with an incomplete test.
I took this test to the speech evaluation and waited an hour in their waiting room. My son was miserable waiting and I was a wreck. Finally the girl came out and said sorry but the test is incomplete so we can’t do your eval. The tears came then. We went back and went through the torture once more and luckily this particular day the “waker” had an assistant who was very gentle. We completed that test and I have never been so relieved. When we did go get our evaluation it was with a different therapist (thank goodness) who said that she was appalled that the girl didn’t do the eval and then require the test be completed before treatment began.
My son was 16 month’s old now due to the scheduling of the required tests and evaluations and at this time he was diagnosed with a severe speech and language delay for both receptive and expressive language. His evaluation stated that he had delayed play skills and lacked some social engagement. I cried when I read report.
We did contact the local Early Intervention program at this time and their rep came out for our eval. I remember she asked me if my son could stack two blocks and I told her I didn’t know because he would mouth every toy so if I gave him a block he would put it in his mouth rather than stack it. He would throw things on the floor to hear the loud bang and often pushed toys around almost like you would a toy car but instead it was a ball or a book. He liked to swing and he also loved to watch things spin. Not exactly playing appropriately with toys… Light up and noisy toys he loved but we did cut back on them at this time. Our rep said he was eligible for services, gave me the paperwork for the district and told us a few things to try. She told us to use beans as a sensory tool but when I put various dry beans in a bowl, again my son ate them rather than play with them. She also suggested I photograph his cup or favorite food or toy and tape them to the fridge so he could request what he desired. He thought they were fun to look at… When my son was 26 months old, that is when he started working with those things that were suggested. I called the schools because I realized that early intervention was through the special Ed department and didn’t want my son to have a record forever if he was in fact released from special ed. The head teacher sort of scared me away saying that yes this can always be accessed. We decided to hold off on that but we were doing our own private therapy at this point so it was alright.
It later turned out that the doctor our speech evaluator had suggested, was the top dog who my doctor referred us to after I went back in for a check up and told him I wanted to know once and for all and wanted to be told what to do next. He said this guy knows. We went for our evaluation when our son was 18 months old, the Friday before the 4th of July.
The doctor was honest, straightforward and compassionate. He observed my son asked a bunch of questions I expressed my concerns and then he said look I see how you are I’m not going to hedge here; I cried. I did not want this for my son; I told him I gave him an extra cute name so it would look good on business cards. The doctor told me that he expected him to overcome most if not all of this by the age of 3 or 4 as long as we hit the ground running and intervened. I had been on a waiting list since that evaluation for speech but could not get my son any appointments or a standing. I decided that day to try somewhere else even though this hospital had the best reputation in town.
The doctor said you do speech you do OT and you do some sort of play. He is the founder of the PLAY project which is based on DIR but he said do that or go to the local center that offers a similar program but get started. I called the center on my car ride home and told them I wanted some information. I decided to go with the doctors program instead. The fees were similar but his program was a parent training program that had a consultant come into the home and teach the parents how to appropriately play with their delayed children.
I did the PLAY project with the consultant for 4 months even though 12 months is recommended. The concept is to avoid having to take your child to hours of therapy for tons of money and learn to do this therapy at home. It’s an amazing and wonderful program and even though my family was already good players by nature we learned the concepts and perfected the skill. We had the consultant come out to the house for these 4 months and she would stay for 3 hours. It was very hard for me to have someone in my home telling me how to play with my child and video me doing so. This for me was a labor of love because even though I knew it was the very best for him, it was still hard for me.
We had our OT eval and had started both speech and OT and the PLAY project. We were on a serious mission. I was also 8 months pregnant at this time. I often wondered if I would have gotten pregnant had I truly suspected how much time and effort and therapy my son would need. The day of his first birthday party that I had been crying was also the day I announced my pregnancy. It was a roller coaster year.
We have switched therapists and dropped out of play but our current speech therapist and OT are both PLAY trained and are so amazing I credit them for much of our progress. The first therapists were also wonderful but we became stagnant and so we moved on. We also take a social speech class with two other boys. My son has made such drastic and wonderful progress that I can’t believe how lucky we are. It was clear that regardless of the diagnosis we needed to intervene. I always say call it tacos or call it shoes but regardless the treatment is the same. My son’s receptive language is coming along wonderfully and his expressive is moving right along as well. He now uses Mama and Dada with intent, says no, more, animal names and sounds, ball, and several other words with intent.
When we went for our re-check 5 months after our initial appointment with the top developmental pediatrician, he stated that we could not have asked for better results and that whatever we were doing, to keep it up. He said we should be so proud and that our son had made 12 months of progress in 5 months.
We did decide to contact the schools again because it is likely that the insurance visits will run out and it’s too much money out of pocket so while I am appealing to my insurance company to increase our allowed amount of appointments, I also know that by not utilizing the schools I am leaving 2.5 hours of free therapy on the table each week. I don’t love disclosing our information to the school district if it is temporary but they have assured me that this is just the early intervention program and says nothing for his future. I look forward to the day when someone asks me which of my kids was delayed and I say "try to guess".
(here is where I bounce back to not editing so even though he is 4 now I wrote much of this a long time ago)
My son is 26 months now and we went back for a quick check in this week. It was 3 months since the last so not as drastic as the first set of changes but more complex changes and a wonderful review still. The doctor told me that I couldn’t ask for more than great to excellent which is where we are. He was shocked and thrilled that my son already had language as he had told us at our first appointment that he would be pleased if he had language by the age of 3. I don’t cry except for tears of joy these days. I adore my son and tell him every night that he is the perfect son for me. He is sweet, and engaging and responsive and initiates and plays more appropriately and observes others and watches other kids and he is well on his way to being just a typical kid. He is exceptionally smart and has started counting and identifying letters but this we are told is sort of off the path but still a good skill for later once it is not just labeling. Just a regular old typical kid is all we could ever want and while we can’t predict the future it looks like we may just get this.
When my son was 10 months old it hit me. When do children respond to their name? I Googled it and every result scared me to death...
My delivery was normal and my son was a good baby for the most part except for his evening scream fest like every colicky baby. I rocked him to sleep every night and he loved his swing. He was never a good sleeper so starting at 3 weeks we would put him in his swing in front of the T.V with a Barney video. He was happy and we could go back to sleep for an hour since he was up most of the night every night. He would wake up to eat every two hours and would take an hour to eat. I cried every night saying I don’t want to see the clock anymore at 2 am. You get over that after you’re a mom a while longer. You just suck it up and drink your coffee ;). I rocked my son to sleep every night and eventually it had evolved into an intense rock, swinging motion. He literally got too heavy for me to do it but it was the only thing that worked. We eventually did a mild cry it out where I cried and he whined with a few tears. He finally was able to put himself to sleep but would still wake several times at night and often for several hours at a time.
One of the nights I had been rocking him in the middle of the night (this I did continue for a long time) he started humming. It was sort of a rhythmic hum. I thought that since I had stopped singing due to exhaustion, that he was seeking the vibration. We later learned this was not the case.
So at 10 months I realized my son was late to respond to his name so I started to try things at home. I would clap directly next to his ear, call his name, yell his name etc. He did not respond to any of these. We tried it with the TV on (which we had on often and he was obsessed with), with it off, and as many other variations we could think of. I was really starting to worry. I had this little nagging for months before and even made up a little lullaby about how perfect he was but this was the first real wake up call for me. At our 10 month check up I mentioned my concerns to our doctor who has always been very supportive of us. He said he saw what I was referring too but that he could just be very interested in what he is doing. He was flipping through a board book while the doctor yelled, danced and clapped his hands so loudly that the patients in the next room likely heard. He never even glanced up. Our doctor said that we should watch it and we would keep up on his progress. At this time I also expressed my concerns about my son’s speech development or lack thereof. I explained that everyone keeps telling me he will talk but it wasn’t the speech factor that worried me, it was the fact that I knew my son did not understand me. I said I don’t care when he talks, I care that he doesn’t have any idea what I am saying to him.
At his 12 month checkup my doctor was out of town and we saw his partner. She told me that if he wasn’t using Mama and Dada with intent than he was delayed. Another layer of sick worry added to my load. He had babbled Mama and Dada around 8 or 9 months and still babbled other sounds but not those anymore. I cried the entire morning of my sons 1st birthday. I was having a house full of people and hated that I worried that my son would be judged. I knew in my heart something was wrong but hated every minute of knowing. I spoke to the nurse at my doctor’s office and she was so kind and understanding and did her best to reassure me that every child is different and that he is just fine. I made an appointment to follow up with my own doctor after how awful I felt after leaving my appointment with the partner. My son had developed motor wise, pretty much but a family friend had a baby a few weeks after I had my son and she was doing all kinds of things.. It was a hard day.
My son walked at 13 months but one day we were at lunch and everyone wanted him to waive bye-bye. He looked at them like they were crazy. I kept saying I have never worked with him on that. Honestly I blamed myself for any delay I came across thinking I was supposed to spend time on that skill, my husband blamed T.V. Now that I have a second child I realize that they pick up those things on their own and we were not responsible.
I met with our doctor again around 12 months and we decided to take action. He said we can still wait but that he knows me and knows that I don’t sit still very well so let’s get rolling. He still was optimistic that everything was fine. He suggested it was possibly an IQ issue. We also later learned that it was the opposite IQ issue than he originally thought. (We have a super smarty pants ;) ). He referred me to a doctor nearby saying that the top doc in town was higher priced and to go meet with this one first. After speaking to him on the phone I decided to start at the head instead and called my pediatricians office back for the top dog’s number. They ended up giving me an old phone number for a doctor no longer practicing by mistake so after many wrong numbers and referrals I ended up with a referral to a local hospitals early development center.
The developmental pediatrician we met with there was highly recommended and she was a great first step for us. My son had a particularly quirky day the day of our visit and oddly he never had done many of the things he did that day, before. He had a laughing jag that morning which he has only done one other time and it was after the appointment. A few doctors have said that he was likely thinking of something funny as he didn’t do this for very long. He felt and rubbed the walls in the office, she rang a bell in his ear and he didn’t respond and he was hyper focused on the design in the carpet. He was lying on his tummy and we put objects or snacks right beside him or directly in his line of vision and he did not acknowledge them or us at all. The doctor said that she didn’t want to diagnose because he was so young (15 months at this time) but that he definitely had a severe speech and language delay. She told us to call the local Early Intervention program and to take him for a hearing test. Also, she told us to take him for a speech evaluation.
The hearing test was the most traumatizing experience ever. We did run over to an ear doctor who happened to have a deaf daughter, while we were going through this process and he assured us that he really didn’t think that hearing was the issue. This was bitter sweet news. We went and had a hearing test where they put him in a room and turn on little toys with sounds and call sounds through speakers to see if he will respond. He did poorly in this phase so they referred him for the more intense test. This was where the trauma began. They advised us to get the test at the children’s hospital where they have you drink a liquid and it puts you to sleep. I couldn’t imagine how I was going to get my picky eater to drink this random substance but also I didn’t want him to go under. I was sick with anxiety. I called the other hospital where the first test was performed and they agreed to try to do it after I rocked him to sleep. He had to be completely still for this test but since he didn’t know what I was saying I couldn’t just say sit still. The day of the test my dad came with me and the two of us spent over an hour trying to get him to sleep. Stroller walks, rocking, milk etc. We were drenched with sweat but we finally did it. We quietly rolled the stroller into the room where the tech had to put probes all over his head and in his ears. She took the cream, put it on one of the metal pieces to be placed on my sons head, and rubbed it as hard as she could while shaking him. He woke up instantly. I still could cry when I think about this. She did the part of the test she could do with him awake and eating a sucker since he was hysterical and we left with an incomplete test.
I took this test to the speech evaluation and waited an hour in their waiting room. My son was miserable waiting and I was a wreck. Finally the girl came out and said sorry but the test is incomplete so we can’t do your eval. The tears came then. We went back and went through the torture once more and luckily this particular day the “waker” had an assistant who was very gentle. We completed that test and I have never been so relieved. When we did go get our evaluation it was with a different therapist (thank goodness) who said that she was appalled that the girl didn’t do the eval and then require the test be completed before treatment began.
My son was 16 month’s old now due to the scheduling of the required tests and evaluations and at this time he was diagnosed with a severe speech and language delay for both receptive and expressive language. His evaluation stated that he had delayed play skills and lacked some social engagement. I cried when I read report.
We did contact the local Early Intervention program at this time and their rep came out for our eval. I remember she asked me if my son could stack two blocks and I told her I didn’t know because he would mouth every toy so if I gave him a block he would put it in his mouth rather than stack it. He would throw things on the floor to hear the loud bang and often pushed toys around almost like you would a toy car but instead it was a ball or a book. He liked to swing and he also loved to watch things spin. Not exactly playing appropriately with toys… Light up and noisy toys he loved but we did cut back on them at this time. Our rep said he was eligible for services, gave me the paperwork for the district and told us a few things to try. She told us to use beans as a sensory tool but when I put various dry beans in a bowl, again my son ate them rather than play with them. She also suggested I photograph his cup or favorite food or toy and tape them to the fridge so he could request what he desired. He thought they were fun to look at… When my son was 26 months old, that is when he started working with those things that were suggested. I called the schools because I realized that early intervention was through the special Ed department and didn’t want my son to have a record forever if he was in fact released from special ed. The head teacher sort of scared me away saying that yes this can always be accessed. We decided to hold off on that but we were doing our own private therapy at this point so it was alright.
It later turned out that the doctor our speech evaluator had suggested, was the top dog who my doctor referred us to after I went back in for a check up and told him I wanted to know once and for all and wanted to be told what to do next. He said this guy knows. We went for our evaluation when our son was 18 months old, the Friday before the 4th of July.
The doctor was honest, straightforward and compassionate. He observed my son asked a bunch of questions I expressed my concerns and then he said look I see how you are I’m not going to hedge here; I cried. I did not want this for my son; I told him I gave him an extra cute name so it would look good on business cards. The doctor told me that he expected him to overcome most if not all of this by the age of 3 or 4 as long as we hit the ground running and intervened. I had been on a waiting list since that evaluation for speech but could not get my son any appointments or a standing. I decided that day to try somewhere else even though this hospital had the best reputation in town.
The doctor said you do speech you do OT and you do some sort of play. He is the founder of the PLAY project which is based on DIR but he said do that or go to the local center that offers a similar program but get started. I called the center on my car ride home and told them I wanted some information. I decided to go with the doctors program instead. The fees were similar but his program was a parent training program that had a consultant come into the home and teach the parents how to appropriately play with their delayed children.
I did the PLAY project with the consultant for 4 months even though 12 months is recommended. The concept is to avoid having to take your child to hours of therapy for tons of money and learn to do this therapy at home. It’s an amazing and wonderful program and even though my family was already good players by nature we learned the concepts and perfected the skill. We had the consultant come out to the house for these 4 months and she would stay for 3 hours. It was very hard for me to have someone in my home telling me how to play with my child and video me doing so. This for me was a labor of love because even though I knew it was the very best for him, it was still hard for me.
We had our OT eval and had started both speech and OT and the PLAY project. We were on a serious mission. I was also 8 months pregnant at this time. I often wondered if I would have gotten pregnant had I truly suspected how much time and effort and therapy my son would need. The day of his first birthday party that I had been crying was also the day I announced my pregnancy. It was a roller coaster year.
We have switched therapists and dropped out of play but our current speech therapist and OT are both PLAY trained and are so amazing I credit them for much of our progress. The first therapists were also wonderful but we became stagnant and so we moved on. We also take a social speech class with two other boys. My son has made such drastic and wonderful progress that I can’t believe how lucky we are. It was clear that regardless of the diagnosis we needed to intervene. I always say call it tacos or call it shoes but regardless the treatment is the same. My son’s receptive language is coming along wonderfully and his expressive is moving right along as well. He now uses Mama and Dada with intent, says no, more, animal names and sounds, ball, and several other words with intent.
When we went for our re-check 5 months after our initial appointment with the top developmental pediatrician, he stated that we could not have asked for better results and that whatever we were doing, to keep it up. He said we should be so proud and that our son had made 12 months of progress in 5 months.
We did decide to contact the schools again because it is likely that the insurance visits will run out and it’s too much money out of pocket so while I am appealing to my insurance company to increase our allowed amount of appointments, I also know that by not utilizing the schools I am leaving 2.5 hours of free therapy on the table each week. I don’t love disclosing our information to the school district if it is temporary but they have assured me that this is just the early intervention program and says nothing for his future. I look forward to the day when someone asks me which of my kids was delayed and I say "try to guess".
(here is where I bounce back to not editing so even though he is 4 now I wrote much of this a long time ago)
My son is 26 months now and we went back for a quick check in this week. It was 3 months since the last so not as drastic as the first set of changes but more complex changes and a wonderful review still. The doctor told me that I couldn’t ask for more than great to excellent which is where we are. He was shocked and thrilled that my son already had language as he had told us at our first appointment that he would be pleased if he had language by the age of 3. I don’t cry except for tears of joy these days. I adore my son and tell him every night that he is the perfect son for me. He is sweet, and engaging and responsive and initiates and plays more appropriately and observes others and watches other kids and he is well on his way to being just a typical kid. He is exceptionally smart and has started counting and identifying letters but this we are told is sort of off the path but still a good skill for later once it is not just labeling. Just a regular old typical kid is all we could ever want and while we can’t predict the future it looks like we may just get this.
Great way to start off
This about says it all so I thought it was a great way to start off...
I'm pasting a link to a poem that I think is the best I have ever heard it said.
http://www.our-kids.org/Archives/Holland.html
I will say that lately, Holland isn't so bad
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