Yesterday afternoon while Sissy was outside playing with her friends Dacotah kept going over to his water table and smacking the rainwater, I decided to go ahead and fill it up, but this time I also put multi colored beads inside it as well. He loved it, he played until he was soaking wet. He is starting to run more (granted he still trips) but he is getting faster. When he walks it looks like he walks on the insides of his feet, I am pretty sure someone told me it is due to his low muscle tone, I guess in the back of mind I have to wonder if braces would help but then he would scream for them to be off.
He came inside and kept being fussy so when I pulled out the finger paints instead of being grumpy, he dove right in. I wish I could capture into words how cute he was. He would grab the paint and feel it 3-4x and then put it on the canvas, at one point he was grabbing chunks and smearing it everywhere. Needless to say the table, the chair, mom, him, and the canvas were covered. For me this was a huge accomplishment because the first time he screamed every time the paint touched him. I'm thinking Frappe (our orange cat) helped a lot by distracting him at random times. But it was a step!
I have always been a barefoot kid and Dacotah if he had his way he would be stark naked outside. I left him in a pull up after he did fingerpainting.
He wouldn't touch his dinner but instead he gulped down two bags of baby food... It makes me wonder why he won't eat and hopefully with the new speech therapist who is also qualifies in feeding will be able to get him on the right track!
Friday, May 27, 2016
Tuesday, May 24, 2016
Tuesday OT with Mel & Sissy's closing program at school
I cannot express in words how great Dacotah's OT is, she is wonderful with him and he interacts great with her. Today he was playing with his trains a lot longer than normal. He enjoyed playing on his slide and knocking over his block wall that Mel would help him rebuild. There was something I did notice was when she asked him to lift a block over his head, he dropped it behind him (accidentally) but he never realized he dropped it or that it was gone. She explained that once it was over his head it was Out of Sight and his lack of body awareness makes him "forget" (lack of a better word) he had it over his head. I have to say that must be sad trying not knowing where in space your body is. But we have noticed it on more than one occasion that he has issues with it. We will work on him learning simpler words through play such as in up,down,in, out, over, under, this, that, etc. until she comes back.
We tried Lycra material, he is not a fan. I was really hopeful that it would be a comfort, but instead, he freaked out completely when we tried swinging him in it. :( So I'll introduce it at night and see if he will be okay with it. So we are back to compressions and brushing. Really hoping that works, he hated brushing to start with but learned he enjoys it, so now when I asked if he wants to be brushed he replies with a head shake.
So basically if you think of our senses, when Dacotah is introduced to something new, not only does he have to register the color, feel, and smell, but learn the name. (may be a reason for the delayed speech). So during playtime, we will start naming the items, so he's only getting the one sense at a time instead an overload which leads to confusion and frustration.
Montana's closing ceremony at school was a nightmare. No honestly the program wasn't a nightmare it was awesome, there were a ton of people, in 6.5 years this had to be the most I had ever seen at the end of school celebration. However, it proved to be tooooo much for Dacotah. Too many people, a lot of talking, and a kid that started screaming within the first 5 minutes. The only time he stopped was when we went in the back and I got him to calm down, but he freaked out upon re-entering the sanctuary. Barbara took him outside with Daddy J, and even though they missed Montana walking in, they were able to sneak back in with him once it got started and more calming.
However, at the end prior to coming home, everyone was up walking and talking and he freaked again. To most it would look like a tired child, but as his mom, I have a feeling he is thinking too many people in a small room. At home, he continued to scream and cry for another 20 minutes before I could finally get him to calm down. Needless to say, it led to one stressed out mommy and baby.
We tried Lycra material, he is not a fan. I was really hopeful that it would be a comfort, but instead, he freaked out completely when we tried swinging him in it. :( So I'll introduce it at night and see if he will be okay with it. So we are back to compressions and brushing. Really hoping that works, he hated brushing to start with but learned he enjoys it, so now when I asked if he wants to be brushed he replies with a head shake.
So basically if you think of our senses, when Dacotah is introduced to something new, not only does he have to register the color, feel, and smell, but learn the name. (may be a reason for the delayed speech). So during playtime, we will start naming the items, so he's only getting the one sense at a time instead an overload which leads to confusion and frustration.
Montana's closing ceremony at school was a nightmare. No honestly the program wasn't a nightmare it was awesome, there were a ton of people, in 6.5 years this had to be the most I had ever seen at the end of school celebration. However, it proved to be tooooo much for Dacotah. Too many people, a lot of talking, and a kid that started screaming within the first 5 minutes. The only time he stopped was when we went in the back and I got him to calm down, but he freaked out upon re-entering the sanctuary. Barbara took him outside with Daddy J, and even though they missed Montana walking in, they were able to sneak back in with him once it got started and more calming.
However, at the end prior to coming home, everyone was up walking and talking and he freaked again. To most it would look like a tired child, but as his mom, I have a feeling he is thinking too many people in a small room. At home, he continued to scream and cry for another 20 minutes before I could finally get him to calm down. Needless to say, it led to one stressed out mommy and baby.
Monday, May 23, 2016
Update on Speech
Today the coordinator called to tell me they are in the process of assigning him a new speech therapist and her name is Katie. I didn't have to call this morning to tell her about Fridays events. But I felt compelled to tell her what all was said and I am going ahead and just saying it on here as well. The first visit she told us she was on medicine for a sinus infection that her to shake uncontrollably. I had no problems with that because I have sinus issues. However, Friday she said out of the blue the doctors changed her medication and it makes her smell like alcohol. I call bullshit. Sorry I have to wonder if she knows I work in the medical field and I grew up with an alcoholic. It was not her body, but when she talked her breath reeked of alcohol. So much so I asked Travis to check her car. I think sometimes background checks through organizations aren't as thorough as they should be. I did inform Sherry this morning after she said she was changing his therapist so they can make a note and check more into it.
I am excited because the new therapist for speech/feeding is through the same office as Mel (his OT) so we will be able to coordinate his care much better this way.
The only downside is EI has to wait until she gets her certification through the state which could be 2-3 weeks, but if she's anything like Mel, she will be great for our family.
I am excited because the new therapist for speech/feeding is through the same office as Mel (his OT) so we will be able to coordinate his care much better this way.
The only downside is EI has to wait until she gets her certification through the state which could be 2-3 weeks, but if she's anything like Mel, she will be great for our family.
Sunday, May 22, 2016
Our Canadian family comes to visit
Dacotah has traveled great this weekend, in fact as I am typing this he is sitting in his car seat watching the DVD player. Prior to our last trip to Harriman TN to see grandma and Papaw Pickell we decided to move his car seat to the middle instead of directly behind my seat. It has been 80% better for traveling so far. But he can see out and he is closer to sissy, and I'm not tossing him food so it's a win win!!!
So this weekend was special our Canadian family came in for a visit. We all met up in Pigeon Forge at the rental cabin. Minus the uninvited scorpion the cabin was great. We were able to enjoy time alone without being stuck in a hotel and we had a blast. Pake and Travis played golf Saturday morning and while they were out Beppe, Montana, Dacotah, and I went to Tanger for about an hour by that point I was stressed and Dacotah was moody. Shopping is not his thing. I made a quick run into Walmart and bought craft supplies to make some sensory bottles to send to our Canadian cousins. Sidetrack: I got the idea after I received his gift from Hilary. Aunt Hilary made him a new lap blanket with sensory ribbons (made from our wedding!) for him to use. This is a priceless gift and I'm so glad he loves it. So on we went back to the cabin we put the bottles together and gave them to Beppe for delivery. While Dacotah was down for a nap and Montana ran off to watch tv. Mom (My Canadian one who adopted me into her family years ago) and I had a long chat about everything going on. After talking to her about my concerns with Dacotah's speech therapist I am going to call the coordinator on Monday and ask that Dacotah be assigned a new one. I have to go with my gut on this and make sure we have the right person. It really came down to the fact this one does not agree with OTs recommendations and I need someone who is on the same team so we get the best results!
Grandma and Papaw Pickell got a hotel on the other end of town so they could watch the kids while we had a double date. We had so many laughs and adventures between food and miniature golf. Honestly it was a getaway that I've needed since last July. Because I had dairy at dinner Travis went in to get Dacotah and Montana from the hotel. Grandma said Dacotah did great (I hid in the backseat so he couldn't see me, and once at the cabin I quickly showered and off to bed he went). Speaking of bed I don't know if it was the fact we were exhausted or if it was the pillow top mattress (I have moms temper-pedic mattress at home) but it made for some great sleeping. Dacotah woke up as usual and I didn't record to see how long he slept but it was restful.
Today (Sunday) we went to Dollywood with Pake, Beppe, Grandma, Papaw, and the kids. Dacotah rode the carousel, not only did he ride it but he rode one of the animals that went up and down. (Daddy was on one side and I was on the other but he rode it!) then when we got off he kept saying this... This... This... And I asked if he wanted to ride it again and he nodded yes!!!! The second time he did not want a moving animal so he sat next to me and grandma on a stationary seat. This is progress no matter how tiny, it's a huge step for him!
We all rode the train together and he fell asleep. At the end Grandma and Papaw babysat him in the park while we went around the park riding rides. Grandma said he only fussed once in the 5 hours they had him, and he kept them on their toes taking his time wandering throughout the park. They have a playground by the Thunderhead and Papaw said he played and played and played and finally Papaw said he (papaw) was tired and they came to find us.
We are almost back to Kingsport surprisingly he isn't asleep but other than a few whimpers he's content. As I said before many times... No matter how tiny the step is we will get there one step at a time!
So this weekend was special our Canadian family came in for a visit. We all met up in Pigeon Forge at the rental cabin. Minus the uninvited scorpion the cabin was great. We were able to enjoy time alone without being stuck in a hotel and we had a blast. Pake and Travis played golf Saturday morning and while they were out Beppe, Montana, Dacotah, and I went to Tanger for about an hour by that point I was stressed and Dacotah was moody. Shopping is not his thing. I made a quick run into Walmart and bought craft supplies to make some sensory bottles to send to our Canadian cousins. Sidetrack: I got the idea after I received his gift from Hilary. Aunt Hilary made him a new lap blanket with sensory ribbons (made from our wedding!) for him to use. This is a priceless gift and I'm so glad he loves it. So on we went back to the cabin we put the bottles together and gave them to Beppe for delivery. While Dacotah was down for a nap and Montana ran off to watch tv. Mom (My Canadian one who adopted me into her family years ago) and I had a long chat about everything going on. After talking to her about my concerns with Dacotah's speech therapist I am going to call the coordinator on Monday and ask that Dacotah be assigned a new one. I have to go with my gut on this and make sure we have the right person. It really came down to the fact this one does not agree with OTs recommendations and I need someone who is on the same team so we get the best results!
Grandma and Papaw Pickell got a hotel on the other end of town so they could watch the kids while we had a double date. We had so many laughs and adventures between food and miniature golf. Honestly it was a getaway that I've needed since last July. Because I had dairy at dinner Travis went in to get Dacotah and Montana from the hotel. Grandma said Dacotah did great (I hid in the backseat so he couldn't see me, and once at the cabin I quickly showered and off to bed he went). Speaking of bed I don't know if it was the fact we were exhausted or if it was the pillow top mattress (I have moms temper-pedic mattress at home) but it made for some great sleeping. Dacotah woke up as usual and I didn't record to see how long he slept but it was restful.
Today (Sunday) we went to Dollywood with Pake, Beppe, Grandma, Papaw, and the kids. Dacotah rode the carousel, not only did he ride it but he rode one of the animals that went up and down. (Daddy was on one side and I was on the other but he rode it!) then when we got off he kept saying this... This... This... And I asked if he wanted to ride it again and he nodded yes!!!! The second time he did not want a moving animal so he sat next to me and grandma on a stationary seat. This is progress no matter how tiny, it's a huge step for him!
We all rode the train together and he fell asleep. At the end Grandma and Papaw babysat him in the park while we went around the park riding rides. Grandma said he only fussed once in the 5 hours they had him, and he kept them on their toes taking his time wandering throughout the park. They have a playground by the Thunderhead and Papaw said he played and played and played and finally Papaw said he (papaw) was tired and they came to find us.
We are almost back to Kingsport surprisingly he isn't asleep but other than a few whimpers he's content. As I said before many times... No matter how tiny the step is we will get there one step at a time!
Friday, May 20, 2016
Speech Day 2
So I went all day today dreading the speech visit. I dreaded seeing the therapist show up knowing I had to let her have access to Dacotah. I told Teresa at work I just have a feeling, call it intuition but something that makes me feel like this generally doesn't turn out well.
I still don't know for sure that this is going to be a good fit. Travis said she seemed fine, but my mommy gut doesn't feel it's quite right. So a quick run down. She pretty much talked to me and Travis telling us what we are doing wrong. She said we should not use visual cues and shouldn't attempt teaching him any more sign language, which is completely the opposite of what OT told me the last visit. So I'm not 100% sure that everyone is on the same page, this lady is more old school, they don't get anything unless they attempt to say a word up to the point of utter frustration. Sorry I know it may be helpful but causing him undue stress by taking his toy away and saying car and trying to get him to say it and only giving it back right before he starts screaming???? I'm sure that's a great way to get him to learn from you. *sigh* or the fact that OT tells us the opposite to not make everything stressful and avoid it as much as possible.
I asked her what her evaluation showed and she said well he has speech delays and I'll have it to you the next visit (that's what she said last visit). :( again I'm trying not to point out every thing negative but I did raise Montana and so far other than some random back talking she does fine.
Honestly as I'm laying here trying to think of anything positive she said I'm not sure there was anything. Oh yeah, she was excited that he is starting to try a few more foods. We found some chicken fingers at Aldis that he likes A LOT.
We were suppose to have an hour visit and she barely stayed 45 min saying she needed to leave and get home, but before she left she said she wants to talk to Sherry about bumping his speech to every week so she can keep a closer watch on him??? So in the back of my mommy head, is there something she's not telling me, or am I just being too negative? Maybe given that she's on the opposite page of OT perhaps she's not use to Sensory kids.
Maybe I need to go with my thoughts and request a new speech therapist but then the question arises does he need every week; should I wait and get that set up first then request a new therapist, or should I keep it every two weeks and get a new therapist first....
Ack!!!!!! I am so confused and stressed
I still don't know for sure that this is going to be a good fit. Travis said she seemed fine, but my mommy gut doesn't feel it's quite right. So a quick run down. She pretty much talked to me and Travis telling us what we are doing wrong. She said we should not use visual cues and shouldn't attempt teaching him any more sign language, which is completely the opposite of what OT told me the last visit. So I'm not 100% sure that everyone is on the same page, this lady is more old school, they don't get anything unless they attempt to say a word up to the point of utter frustration. Sorry I know it may be helpful but causing him undue stress by taking his toy away and saying car and trying to get him to say it and only giving it back right before he starts screaming???? I'm sure that's a great way to get him to learn from you. *sigh* or the fact that OT tells us the opposite to not make everything stressful and avoid it as much as possible.
I asked her what her evaluation showed and she said well he has speech delays and I'll have it to you the next visit (that's what she said last visit). :( again I'm trying not to point out every thing negative but I did raise Montana and so far other than some random back talking she does fine.
Honestly as I'm laying here trying to think of anything positive she said I'm not sure there was anything. Oh yeah, she was excited that he is starting to try a few more foods. We found some chicken fingers at Aldis that he likes A LOT.
We were suppose to have an hour visit and she barely stayed 45 min saying she needed to leave and get home, but before she left she said she wants to talk to Sherry about bumping his speech to every week so she can keep a closer watch on him??? So in the back of my mommy head, is there something she's not telling me, or am I just being too negative? Maybe given that she's on the opposite page of OT perhaps she's not use to Sensory kids.
Maybe I need to go with my thoughts and request a new speech therapist but then the question arises does he need every week; should I wait and get that set up first then request a new therapist, or should I keep it every two weeks and get a new therapist first....
Ack!!!!!! I am so confused and stressed
Thursday, May 19, 2016
A Typical Night
People around me often wonder why I am so moody... Everyone has ups and downs even when they sleep 8+ hours a night... Now imagine yourself with a newborn (yep it's expected you will get up several times a night and if you are lucky by 3-6months they are sleeping 5+ hours a night) but what if... That turns into 6 months... 9 months... A year... 18 months... 24 months... Longer hey we are officially at 26 months and counting. Up until a month ago Dacotah woke up Every hour to every hour and a half... All night every single night.... May not seem like a lot given he would eat and go back to sleep in 5 to 10 minutes. So for a quick med lesson the human brain sleep cycle REM sleep cycles start after you have been asleep for 60-90 min... What really? Yep I'm sure you figured it out! For 2 solid years neither mother nor son had hit a full REM cycle... Which leads to massive sleep deprivation. Adding the weighted blanket he now sleeps anywhere from 90 minutes to 5 hours... So we are getting some sleep for which I am very thankful but it will take at a minimum of 1 year to fully recover from the massive sleep deprivation.
So for everyone's humor here is the current night in our house:
8pm Dacotah asks to go night night... I know from experience he is no where near ready for bed but at the same time I am exhausted from a long day so maybe just this once he will nurse and go to sleep. (Every single time this backfires and I can hear Samuel L. Jackson reading the story Go the **** to Sleep, I have to find humor, if you are offended sorry but get over it) so he nurses and he sits up, I crawls off the bed and goes back to daddy in the Living Room... I am too tired to get up so I fall asleep knowing he is safe.
10pm Travis wakes me up by opening the bedroom door (I am a super light sleeper despite the fan and sound machine) Dacotah crawls over me and nurses until he falls asleep, at this point I'm wide awake from my brief nap, so I go into the living room and watch Survivor with Travis.
1 AM: he slept 3 hours!!!! I walk into the bedroom and he is whining and kicking the heck out of the wall (sensory related). He's off his blanket (usually he will roll on top of it and sleep) he nurses and goes back to sleep. It's now 1:20, I should be sleeping and I'm heading that way but I have thoughts that run through my mind and blogging them helps. (I realize as I'm typing this we stopped brushing him during the day, the OT in Kingsport had suggested it and I'm now wondering if we should have kept it up despite switch OTs, so tomorrow I will add it back into our routine and brush him every 2 hours and see if next week if he sleeps longer) what better way to keep track than to make a blog that tracks sleep patterns... Ok off to sleep for mommy be back in a bit.
4:10 AM😀 Another 3 hours and 10 minutes woot woot! My sleep when I'm finally hitting dream stage is full of nightmares, I hate it, I know it's a dream but I have a hard time waking up from them. I wonder what he dreams about because some nights he will moan a lot in his sleep.
4:16, he's back to sleep
5:45-5:52 awake, nurses, and back to sleep
6:58-7:04 awake, nurses, and back to sleep
8:22 up and ready to start the day, Mommy is exhausted and I think a lot has to do with his schedule since 4, the waking up continuously almost as though he has an internal alarm waking him up every hour...
Anyway so my plan is to log again in a week so I can track his behavior more efficiently for the OT
Wednesday, May 18, 2016
A trip to town and food allergies
Well today has me wondering if perhaps there is a new underlying allergy to food we haven't found yet. We picked sissy up from school and she decided to share her peanut butter sandwich with her brother. Same bread, same peanut butter, but a reaction. First the peanut butter is thick so I think he kept coughing because it went down wrong, he proceeded to throw up. Not a huge deal he had thrown up after drinking water before too, but then he started getting little red hives (like he did the first time to McDonald's Frappes) so I asked and triple asked and yep I lost it with sissy (she has been told to never share her food with her brother because we try not to restrict her foods, but for whatever reason today she did), So we are pretty sure she didn't cross contaminate the sandwich but again it came from school.
We drove on to Target and his face (just on the right side) was red and irritated, wiped it off and noticed he had peanut butter on his ear. Wiped it off and went to get the one pouch of baby food he will eat! At the checkout his eye was redder and he had more little hives again...I am not sure what it was he came into contact with but I may have to do a skin reaction test on his back (so he can spread it to find out if it was the actual peanut butter or if it was contaminated from sissy's lunch bag)
I think to me his food allergies are my greatest, nope I KNOW THEY ARE my greatest concern. It scares me to think how fast his hives can spread or how fast he can go to the first stages of anaphylaxis on us. Been there, done that, would rather never do it again.
The only thing the allergist can suggest is avoiding the culprits... (Maybe I should build him a bubble, you know like the movie about the boy who lived in a bubble... Same concept)
Anyway I gave him a half Benadryl chewable, he fell asleep (he hadn't had a nap yet) and when he woke up the redness and hives were gone completely. I am thankful that for the small cross contamination Benedryl works but it gets real too fast when it doesn't.
Then I wonder about daycare, is it even a possibility with a child who is that sensitive, (I read all the time parents getting upset because they have to accommodate other kids food allergies, but what if they knew it could be the last time that child ate because it was an inconvenience)... But then you have cross contamination of toys, desks, markers... The only way it's possible would be if every kid washed their hands upon entering the school and after every snack and meal.... Ohhhhhhh the thoughts are freaky! Over reactive? Over protective??? Nope it's just that food allergies are just that serious...
Update: after writing this earlier I talked to Montana's teacher. It was most likely a cross contamination for the bag of cheese balls in her lunch. Montana said she debated on eating them first but grabbed her sandwich, milk proteins transferred from her hands to her sandwich to her brother... :/ Thankfully and fingers crossed that is all it was!
We drove on to Target and his face (just on the right side) was red and irritated, wiped it off and noticed he had peanut butter on his ear. Wiped it off and went to get the one pouch of baby food he will eat! At the checkout his eye was redder and he had more little hives again...I am not sure what it was he came into contact with but I may have to do a skin reaction test on his back (so he can spread it to find out if it was the actual peanut butter or if it was contaminated from sissy's lunch bag)
I think to me his food allergies are my greatest, nope I KNOW THEY ARE my greatest concern. It scares me to think how fast his hives can spread or how fast he can go to the first stages of anaphylaxis on us. Been there, done that, would rather never do it again.
The only thing the allergist can suggest is avoiding the culprits... (Maybe I should build him a bubble, you know like the movie about the boy who lived in a bubble... Same concept)
Anyway I gave him a half Benadryl chewable, he fell asleep (he hadn't had a nap yet) and when he woke up the redness and hives were gone completely. I am thankful that for the small cross contamination Benedryl works but it gets real too fast when it doesn't.
Then I wonder about daycare, is it even a possibility with a child who is that sensitive, (I read all the time parents getting upset because they have to accommodate other kids food allergies, but what if they knew it could be the last time that child ate because it was an inconvenience)... But then you have cross contamination of toys, desks, markers... The only way it's possible would be if every kid washed their hands upon entering the school and after every snack and meal.... Ohhhhhhh the thoughts are freaky! Over reactive? Over protective??? Nope it's just that food allergies are just that serious...
Update: after writing this earlier I talked to Montana's teacher. It was most likely a cross contamination for the bag of cheese balls in her lunch. Montana said she debated on eating them first but grabbed her sandwich, milk proteins transferred from her hands to her sandwich to her brother... :/ Thankfully and fingers crossed that is all it was!
Monday, May 16, 2016
Inspiration from one person to another
A friend of mine posted: "Can I just say.... It takes a special person to be a parent of a child with special needs. God knows what He's doing. There isn't one 'special' child who has come through my preschool class over the years who doesn't have parents willing to absolutely bend over backwards to make sure their child was reaching one milestone after another and celebrating every. single. victory. along the way. You all inspire me. Period."
To protect their privacy we will leave their identity as unknown. At first I didn't see their post and Travis said did you see their post. I read it, I cried... Really cried... I tried multiple times to write a comment... Even tried writing a private message and it just wasn't meant to be sent... I had no idea about this blog until 4 am last night, but now it's the time.
Having a child who is different it is not easy. You have the supporters, you have the negative nelly's and you have those who just don't know what to say. Then you have those who reach out and grab your hand and say lets do this together, let's make a village and raise your child together! This person does just that, hey let me help you, let me inside so I know what your life is like, no I can't fix it, I c ant make him better, but I am here, just a step away if you need inspiration!
I know when they posted that they would never have thought it would be so impacting. Honestly, I'm not sure who they posted it for, but with the week I had had, it built me up so fast that someone took time out of their own busy life to create a post that spoke directly to my heart.
Granted we have just started our journey with our son who needs special attention and a little extra help, God never said it would be easy, but knowing we have supporters and cheerleaders along the way and people willing to say hey look into this or I found that, will never know how much it helps. As I said before it takes a village to raise a child, and it's not easy when they fall down or you feel they take 2 steps back for every 3 forward, but together our son will reach his milestones one step at a time!!!
To the one who posted the above, your love and inspiration for others is A-MAZING!
To protect their privacy we will leave their identity as unknown. At first I didn't see their post and Travis said did you see their post. I read it, I cried... Really cried... I tried multiple times to write a comment... Even tried writing a private message and it just wasn't meant to be sent... I had no idea about this blog until 4 am last night, but now it's the time.
Having a child who is different it is not easy. You have the supporters, you have the negative nelly's and you have those who just don't know what to say. Then you have those who reach out and grab your hand and say lets do this together, let's make a village and raise your child together! This person does just that, hey let me help you, let me inside so I know what your life is like, no I can't fix it, I c ant make him better, but I am here, just a step away if you need inspiration!
I know when they posted that they would never have thought it would be so impacting. Honestly, I'm not sure who they posted it for, but with the week I had had, it built me up so fast that someone took time out of their own busy life to create a post that spoke directly to my heart.
Granted we have just started our journey with our son who needs special attention and a little extra help, God never said it would be easy, but knowing we have supporters and cheerleaders along the way and people willing to say hey look into this or I found that, will never know how much it helps. As I said before it takes a village to raise a child, and it's not easy when they fall down or you feel they take 2 steps back for every 3 forward, but together our son will reach his milestones one step at a time!!!
To the one who posted the above, your love and inspiration for others is A-MAZING!
OT with Mel initial contact and random thoughts
I met Dacotah's OT last week on Tuesday, her name is Mel, and I ABSOLUTELY LOVE HER, Dacotah loved her and interacted with her during her visit. She was great, the coordinator Sherry came with her to introduce us, and it was instant connection before she ever took a step inside. We had worked for a couple weeks making Dacotah a sensory room in our den that's shared with Montana's games and TV but it works!
Mel was astounded that I had a ball pit with a slide, a gymnastics mat, puzzles (thanks Monica and Shawn), he has a ride on train Mamaw and Papaw Pickell bought him for his birthday (he is still unsure of it but will ride it 1-3x around the track before signing he is all done), I made him a weighted blanket (and since then a weighted bear), and sensory bottles!
Let me tell you about sensory bottles and everything else online that is classified as special needs! Weighted blankets smaller in size than the one I made sell for $60-$100... My cost $30. Sensory bottles run $35 for a set of 4, or $10 each. My cost for 4... $10! I have always been a crafty hands on person but the price hike is crazy!!!!
So anyway Mel said he climbs up the slide backwards (most kids are 4 before they reverse climb) because he's strong in his upper arms and torso, and it provides sensory input, most parents discourage him going up backwards but she said to let him. It will provide sensory input to his vestibular system which will help build his connections that are missing in his brain. (Again not 100% sure how everything is connected and I have no intentions of becoming a neurologist to find that out) basically our brains have pathways that are built, a child with SPD is missing those pathways and have to find ways to build the circuit that's missing. She also suggested weighing down all of his toys especially his cardboard building bricks (we have since added shelled corn and taped them up) he had picked up a huge interest in them since we added the weight.
Mel will accompany us at some point out in town to see how we can help him adapt to being in public places. I was thinking today how to put this in words and oddly enough someone asked me about SPD and how it works. So here goes
Most of us hear the everyday sounds going on around us and pay little to no attention. Sure a blaring car horn, or a parent raising their voice, or a crying kid will get your attention. But a child with SPD hears every single sound almost individually all at one time. The dog is barking the wind is blowing, a car drives by, while a train blows its horn nearby, and people are in the yard talking, not to mention the sights of everything, or the smells.. It's almost like an adult in a loud concert and you can't hear anything going on, yet there is so much going on at the same time, so the child tries processing it and it's too much too fast and their brain freaks out which leads to them screaming and crying until they find comfort whether it's nursing, rocking, a bear hug telling them it's okay and holding them tight until the fear passes, and sometimes it's the complete opposite they shut down and turn away from it. On a recent trip with sissy's school we stay away from as many people as possible, but in the zoo you have school groups, every time a group went by, Dacotah dropped and turned his head away. It wasn't a shy response (I asked about this) it was over stimulating to he tried to block it out by smelling us and turning away every time a group would pass.
Then there are days like a recent trip to Dollywood surprisingly he did well, he still hated the rides, except the 50s cars which he loved but wasn't sure about the blaring music, but when it came time to ride the ducks or the carousel or the flying bees he would say Wow!!! But if you tried to put him in the seat, it was melt down city! Remember the car seat restraint same concept. The recent trip to Aldis was horrific he was a screaming crying mess! Ha dad and his girlfriend took him to Walmart one day and dad said, "I have never seen a child act like he did, he screamed nonstop anytime we stopped" Barbara stayed with him in the car while dad did their grocery shopping. Sad to say but I am glad it's not all in my head! .
Mel has been in contact about getting some Lycra material, some compression type clothes (I am trying to find someplace local for under armour that's 18m so he can try it on before I go online and buy it), and a hammock for the front yard. She complemented the room and the front yard.
Confession time: so last fall Montana accidentally left the den door open... And you know how they say God speaks in a small still voice how very true. I thought Dacotah was safely playing in the den, instead I found him down the back alley and a few days later a repeat incident occurred while I was cooking dinner and he was in the middle of the street. Nope I didn't have a full eye on him either time. The first time I was in the bathroom the second I was cooking dinner. After that new locks were put on the den door, and a privacy fence went up around our front yard. I don't need to hear I should have been right there, because you know what you are right I should have been and I wasn't. So we made him a safe place.
Our front yard is fully enclosed and the front door opens directly to a locked privacy fence no one gets in, he can't get out, it's fully safe and allows him the freedom to be inside or out as much as his heart contends. So Mel loves that she has a yard with a slide, swing, ride on toys and tables for sensory learning at his disposal.
I like Mel and I am excited to see what she had in store for her next visit which is scheduled for next week! Dacotah even waved and told her bye!
Mel was astounded that I had a ball pit with a slide, a gymnastics mat, puzzles (thanks Monica and Shawn), he has a ride on train Mamaw and Papaw Pickell bought him for his birthday (he is still unsure of it but will ride it 1-3x around the track before signing he is all done), I made him a weighted blanket (and since then a weighted bear), and sensory bottles!
Let me tell you about sensory bottles and everything else online that is classified as special needs! Weighted blankets smaller in size than the one I made sell for $60-$100... My cost $30. Sensory bottles run $35 for a set of 4, or $10 each. My cost for 4... $10! I have always been a crafty hands on person but the price hike is crazy!!!!
So anyway Mel said he climbs up the slide backwards (most kids are 4 before they reverse climb) because he's strong in his upper arms and torso, and it provides sensory input, most parents discourage him going up backwards but she said to let him. It will provide sensory input to his vestibular system which will help build his connections that are missing in his brain. (Again not 100% sure how everything is connected and I have no intentions of becoming a neurologist to find that out) basically our brains have pathways that are built, a child with SPD is missing those pathways and have to find ways to build the circuit that's missing. She also suggested weighing down all of his toys especially his cardboard building bricks (we have since added shelled corn and taped them up) he had picked up a huge interest in them since we added the weight.
Mel will accompany us at some point out in town to see how we can help him adapt to being in public places. I was thinking today how to put this in words and oddly enough someone asked me about SPD and how it works. So here goes
Most of us hear the everyday sounds going on around us and pay little to no attention. Sure a blaring car horn, or a parent raising their voice, or a crying kid will get your attention. But a child with SPD hears every single sound almost individually all at one time. The dog is barking the wind is blowing, a car drives by, while a train blows its horn nearby, and people are in the yard talking, not to mention the sights of everything, or the smells.. It's almost like an adult in a loud concert and you can't hear anything going on, yet there is so much going on at the same time, so the child tries processing it and it's too much too fast and their brain freaks out which leads to them screaming and crying until they find comfort whether it's nursing, rocking, a bear hug telling them it's okay and holding them tight until the fear passes, and sometimes it's the complete opposite they shut down and turn away from it. On a recent trip with sissy's school we stay away from as many people as possible, but in the zoo you have school groups, every time a group went by, Dacotah dropped and turned his head away. It wasn't a shy response (I asked about this) it was over stimulating to he tried to block it out by smelling us and turning away every time a group would pass.
Then there are days like a recent trip to Dollywood surprisingly he did well, he still hated the rides, except the 50s cars which he loved but wasn't sure about the blaring music, but when it came time to ride the ducks or the carousel or the flying bees he would say Wow!!! But if you tried to put him in the seat, it was melt down city! Remember the car seat restraint same concept. The recent trip to Aldis was horrific he was a screaming crying mess! Ha dad and his girlfriend took him to Walmart one day and dad said, "I have never seen a child act like he did, he screamed nonstop anytime we stopped" Barbara stayed with him in the car while dad did their grocery shopping. Sad to say but I am glad it's not all in my head! .
Mel has been in contact about getting some Lycra material, some compression type clothes (I am trying to find someplace local for under armour that's 18m so he can try it on before I go online and buy it), and a hammock for the front yard. She complemented the room and the front yard.
Confession time: so last fall Montana accidentally left the den door open... And you know how they say God speaks in a small still voice how very true. I thought Dacotah was safely playing in the den, instead I found him down the back alley and a few days later a repeat incident occurred while I was cooking dinner and he was in the middle of the street. Nope I didn't have a full eye on him either time. The first time I was in the bathroom the second I was cooking dinner. After that new locks were put on the den door, and a privacy fence went up around our front yard. I don't need to hear I should have been right there, because you know what you are right I should have been and I wasn't. So we made him a safe place.
Our front yard is fully enclosed and the front door opens directly to a locked privacy fence no one gets in, he can't get out, it's fully safe and allows him the freedom to be inside or out as much as his heart contends. So Mel loves that she has a yard with a slide, swing, ride on toys and tables for sensory learning at his disposal.
I like Mel and I am excited to see what she had in store for her next visit which is scheduled for next week! Dacotah even waved and told her bye!
His first speech therapy
I am going to be 100% brutally honest IT DID NOT GO AS I HAD HOPED OR PLANNED. I would love to say the therapist was personable and compassionate but in the hour she was here doing her evaluation (I was later informed this was 100% unnecessary) she spoke directly to Dacotah twice!!! Twice in 1 hour!!! Two words in fact, Hi, and one of her questions was will he respond to his name if he is doing something. I told her to ask and she said "Dacotah" to which he looked up and immediately went back to watch Bob the Builder. She said "I don't like being right up in their space the first visit". I can understand that but you can say more than 2 words in an hour to a child you are going to be interacting with and if not you can be replaced anyone of have that feeling of no connection, well this is by far the closest I have ever not connected with someone!.
I was more than upset and furious and after she left the more I thought about it the more my inner ticking time bomb grew.... So I called the coordinator and asked for another therapist. While talking to her I thought well maybe I am overreacting, maybe it was just an initial first impression so I said "I will be more than happy to give her a second visit just to make sure it's not a proper fit, but if it's like the first visit I want a replacement.
So here we are two weeks after the first visit. I sent her a text on Friday asking when she was planning on coming back for her next visit and I still have not received a reply. So later today I will call her, as much as I hate it, but I will call and hope in all honesty she doesn't answer, because sometimes gut instincts are right and maybe we just aren't a fit, and as the song says if mommy ain't happy there ain't nobody happy. Don't ignore my son and there won't be an issue....
I was more than upset and furious and after she left the more I thought about it the more my inner ticking time bomb grew.... So I called the coordinator and asked for another therapist. While talking to her I thought well maybe I am overreacting, maybe it was just an initial first impression so I said "I will be more than happy to give her a second visit just to make sure it's not a proper fit, but if it's like the first visit I want a replacement.
So here we are two weeks after the first visit. I sent her a text on Friday asking when she was planning on coming back for her next visit and I still have not received a reply. So later today I will call her, as much as I hate it, but I will call and hope in all honesty she doesn't answer, because sometimes gut instincts are right and maybe we just aren't a fit, and as the song says if mommy ain't happy there ain't nobody happy. Don't ignore my son and there won't be an issue....
We met with Early Intervention
Some of Montana's teachers at Kings Christian Academy gave me the contact information for Early Intervention for Wise County. I honestly did not know this resource existed prior to being contacted. At first I was hesitant because I had heard the OT in Kingsport was excellent with kids but after meeting I knew it wasn't the place I wanted to take Dacotah. Imagine being the mom of a nonverbal two year old and letting a stranger take him back into a room and you have no idea what they are working on. Sorry but I am a hands on mommy.
So on April 19th we did the EI evaluation in the comforts of our living room. From the initial contact their caring personalities made Dacotah and I both feel super comfortable. To qualify for EI a child has to be at least 25% delayed. Dacotah's as most of you know came back at 50%. This was the first time I heard "since your child is considered special needs", it was definitely shocking I figured yeah he had some sensory issues ad had some speech problems but special needs made it feel real. During the course of an hour I wanted to know more than the Google version of sensory processing disorder, I wanted to know if they thought he might be autistic despite he doesn't have decreased eye contact. The OT who accompanied the coordinator said most likely he didn't have autism but a psychologist would have to be for sure when he turns 3ish. With him being mainly nonverbal there isn't a detailed list to know for sure as of yet. My genuine prayer is that he's not autistic. I have been asked a few times lately if he has SPD if he is autistic. Here's something interesting most all autistic children have some kind of SPD but not all kids with SPD are autistic!
Anyway they seem to think the speech delay is what is throwing off his tactile, his social, and his feeding. Dacotah is still 70-80% nursing. Despite trying to wean him at one and 18m it led to a super clingy, wanting nothing else or a continuous nursing cycle every time mommy sat down. They confirmed his attachment is sensory related and will take time to complete. Their hope is that their speech/feeding and OT can help prepare him to talk and eat like a normal 2 year old should. Right now if I had to compare he is very similar to a one year old, but understands EVERYTHING you say to him. He is super smart in his comprehension.
During that visit a comment was made, I don't recall who said it but I was told I am a hands on parent and seem to be involved with my sons disorder. I was shocked and asked "he is my son why would I not be". Evidently in their experience they are treated like babysitters and most of the parents are hands off.
If anyone knows me, I am anything but hands off when it comes to either of my kids. You better believe I am right there helping as much as I can to make sure milestones and goals are met. Big sister Montana loves being on the swim team and I am right there cheering her on every day I can, and I'll be right there for Dacotah cheering him on every step of the way.
So Early Intervention has Dacotah on a rotating schedule one week he will have speech/feeding therapy, and the following he will have OT. These can be at home or out in public. So far both visits have been at home and I'll post on those in a new blog!
One question I've been meaning to bring up and I keep forgetting is why did Dacotah once say "daddy, beep beep, puppy, etc" on his own, now we can't get him to repeat them. It was as if they were trapped inside and he forgot them. So let's play hide and seek and go find them.
On a positive he has learned how to communicate yes and no. If he wants something and you get it right he trembles with excitement and nods his head up and down. If it's not what he wanted he throws both hands up as if saying all done and screams no no no. It's never a single no lol!
So on April 19th we did the EI evaluation in the comforts of our living room. From the initial contact their caring personalities made Dacotah and I both feel super comfortable. To qualify for EI a child has to be at least 25% delayed. Dacotah's as most of you know came back at 50%. This was the first time I heard "since your child is considered special needs", it was definitely shocking I figured yeah he had some sensory issues ad had some speech problems but special needs made it feel real. During the course of an hour I wanted to know more than the Google version of sensory processing disorder, I wanted to know if they thought he might be autistic despite he doesn't have decreased eye contact. The OT who accompanied the coordinator said most likely he didn't have autism but a psychologist would have to be for sure when he turns 3ish. With him being mainly nonverbal there isn't a detailed list to know for sure as of yet. My genuine prayer is that he's not autistic. I have been asked a few times lately if he has SPD if he is autistic. Here's something interesting most all autistic children have some kind of SPD but not all kids with SPD are autistic!
Anyway they seem to think the speech delay is what is throwing off his tactile, his social, and his feeding. Dacotah is still 70-80% nursing. Despite trying to wean him at one and 18m it led to a super clingy, wanting nothing else or a continuous nursing cycle every time mommy sat down. They confirmed his attachment is sensory related and will take time to complete. Their hope is that their speech/feeding and OT can help prepare him to talk and eat like a normal 2 year old should. Right now if I had to compare he is very similar to a one year old, but understands EVERYTHING you say to him. He is super smart in his comprehension.
During that visit a comment was made, I don't recall who said it but I was told I am a hands on parent and seem to be involved with my sons disorder. I was shocked and asked "he is my son why would I not be". Evidently in their experience they are treated like babysitters and most of the parents are hands off.
If anyone knows me, I am anything but hands off when it comes to either of my kids. You better believe I am right there helping as much as I can to make sure milestones and goals are met. Big sister Montana loves being on the swim team and I am right there cheering her on every day I can, and I'll be right there for Dacotah cheering him on every step of the way.
So Early Intervention has Dacotah on a rotating schedule one week he will have speech/feeding therapy, and the following he will have OT. These can be at home or out in public. So far both visits have been at home and I'll post on those in a new blog!
One question I've been meaning to bring up and I keep forgetting is why did Dacotah once say "daddy, beep beep, puppy, etc" on his own, now we can't get him to repeat them. It was as if they were trapped inside and he forgot them. So let's play hide and seek and go find them.
On a positive he has learned how to communicate yes and no. If he wants something and you get it right he trembles with excitement and nods his head up and down. If it's not what he wanted he throws both hands up as if saying all done and screams no no no. It's never a single no lol!
The First Tears from Mommy
I tried posting this at 5am this morning. So finally I think I found how to submit a new post.
The first tear from mommy
I have to say I think the first feeling I had sitting in the OTs office in Kingsport was one of relief. Finally,we had a diagnosis that matched everything about Dacotah. The lights, sounds, over stimulation, etc boiled down to Sensory Processing Disorder and mild speech delay. I pondered on the mild speech delay and we had the second evaluation through early intervention it was most definitely Severe speech delay he is 26months with the speech of a 9-12month old.
The SPD obviously creates challenges and with those, we will meet milestones one step at a time. The speech, however, is probably the hardest thing as his parents we deal with.
Travis doesn't say much but I can tell he is frustrated when Dacotah calls him mommy to get his attention to go play. Let me say this he calls him mommy, regardless if I am in the room or not. He knows we are different people that's obvious but he stopped saying daddy a year ago, very rarely does he ever say da da and that's rare.
At work one day Dacotah was with me while I was talking to doc right after his diagnosis and as Dacotah walked back up front to Teresa he looks back over his shoulder and signed for me to come with him, (his sign is holding his hand face up and curling his fingers toward him). With tears in my eyes, I stood there and said, "you know the hardest part is not hearing him talk, not being able to understand why he is frustrated and not knowing what he wants". I don't remember docs words I was too caught up in my pity party but it was along the lines Dacotah will learn to talk in his own way in his own time. Which is very true
His words may never be communicating the way we do with each other, but he will talk, with the right speech therapist, he will get there just one simple step at a time.
The first tear from mommy
I have to say I think the first feeling I had sitting in the OTs office in Kingsport was one of relief. Finally,we had a diagnosis that matched everything about Dacotah. The lights, sounds, over stimulation, etc boiled down to Sensory Processing Disorder and mild speech delay. I pondered on the mild speech delay and we had the second evaluation through early intervention it was most definitely Severe speech delay he is 26months with the speech of a 9-12month old.
The SPD obviously creates challenges and with those, we will meet milestones one step at a time. The speech, however, is probably the hardest thing as his parents we deal with.
Travis doesn't say much but I can tell he is frustrated when Dacotah calls him mommy to get his attention to go play. Let me say this he calls him mommy, regardless if I am in the room or not. He knows we are different people that's obvious but he stopped saying daddy a year ago, very rarely does he ever say da da and that's rare.
At work one day Dacotah was with me while I was talking to doc right after his diagnosis and as Dacotah walked back up front to Teresa he looks back over his shoulder and signed for me to come with him, (his sign is holding his hand face up and curling his fingers toward him). With tears in my eyes, I stood there and said, "you know the hardest part is not hearing him talk, not being able to understand why he is frustrated and not knowing what he wants". I don't remember docs words I was too caught up in my pity party but it was along the lines Dacotah will learn to talk in his own way in his own time. Which is very true
His words may never be communicating the way we do with each other, but he will talk, with the right speech therapist, he will get there just one simple step at a time.
A typical day
I am so sick of people saying to me that Dacotah is just experiencing terrible 2s and he is just a late talker and he's fine.
Perhaps my definition of fine is wrong, or perhaps the late nights of constantly being woken up is normal, or when we make it a day without mommy and daddy being at their wits end from exhaustion
Here's my typical day:
First and foremost making sure that he doesn't come in contact with milk or eggs, an unknowing child or stranger touching him sends me in freak out mode and here comes the baby wipes when they aren't looking in hopes of not ending up in the ER or using his Epi-pen. Or let's not forget the awesome trip to the kids museum with grandma and grandpa we had a blast and absolutely loved it. They served ice cream in the foyer and this little boy who had ice cream running down his hand followed Dacotah to the point that after every single station I wiped his hands off, no it's not OCD it's preventing a trip to the ER. Thankfully it worked!
Shopping trips are nonexistent unless there are two of us. When we stop to get what we need he screams. He doesn't want in the buggy he doesn't want out, he wants to be held, but then he doesn't instead he screams, cries, and arches until we move to the next section of the store. Repeat above. If I have to go by myself it's less than 15 minutes 5 minutes of calm kid, 5 minutes of trying to distract him, and 5 minutes of sheer screeches By the time we get to the checkout he is a screaming mess, mommy is darn near in emotionally breakdown as I try to pay while keeping him from running out the door because he is done.
Car seats suck, yes I know they save countless lives. He hates them. He arches his back and screams not wanting to go in. Instead mommy holds on to him until he relaxes just a bit so I can have him safety strapped in. Hurry turn on the DVD player to snatch his attention so he forgets he is strapped in. (The DVD player had been the best investment for trips). Day trips seem to be better, but at nighttime watch out. Oncoming car lights freak him out and he screams and scratches himself, you can put a blanket up and he still screams because the pole lights lighting the side of the road are coming in the side window. Try calming him with toys that are thrown as he yells no no no....
The lack of talking, it's not that he can't, it's not that he won't, this one I have no explanation for... You see he use to say words lots of them, not perfect but he said words he use to say daddy, he use to say sissy, he would say ow, and beep beep, and then he stopped. In the past two months he may have said da da twice, but looks at his daddy and says mommy when he wants him to follow him, despite Travis constantly saying daddy, you want daddy to come with you.
Pain, it's as though it doesn't exist, he cut his foot the other day on a nail, all he said was mmmmmmmm ma, and turned his attention back to what he was doing. He has hit his head so hard on the wall at night it makes me cringe and it's as though nothing has happened.
Strength I have seen strong kids but when Dacotah has a freak out. Things get thrown. Heavy things up to 4 pounds that I know for sure of the weight are sent across the room like they are a sheet of paper. train tracks "granted they were merely nailed down" came up in a matter of seconds. Blocks can't be stacked up against the wall when we are done as the first thing he does is tear them back down again. We wait until he goes to bed to attempt to clean up the tornado sized mess.
So while yes on the outside Dacotah looks like the normal shy 2 year old that turns his head and turns his body toward mommy or daddy when someone approaches him. If you didn't know him you would think he's just a child suffering terrible twos when we are out in town. But until you live in our shoes please do not tell me you don't see anything wrong with our son.
I never asked for your opinion... In fact I ignored it for a year when someone (a doctor) mentioned he may have some sensory issues. My husband said I think he's fine, he will grow out of it. But when he walks into things repeatedly as though they aren't there, smacking his head against the way, or screaming when you touch his head it makes you second guess the him being oaky. So I took him to the peds office who saw him smack into the chair trying to get to the other side... Not once, twice, but multiple times. Took him to the eye doctor his vision is fine. Took him to the speech therapist he has obvious delays. Took him to OT yes we see this in sensory kids their vestibular system doesn't connect the brain connectors the way his brain should. So at this point with two physicians, two speech therapists, and two occupational therapists all in agreement I have to say no he isn't normal for his age, but that's okay, he has a strong support system and each day we will take it one step at a time and in the meantime I will come up with a nicer way to handle "he seems fine to me" comments so I'm not up at 4 am with it brewing through my mind.
Perhaps my definition of fine is wrong, or perhaps the late nights of constantly being woken up is normal, or when we make it a day without mommy and daddy being at their wits end from exhaustion
Here's my typical day:
First and foremost making sure that he doesn't come in contact with milk or eggs, an unknowing child or stranger touching him sends me in freak out mode and here comes the baby wipes when they aren't looking in hopes of not ending up in the ER or using his Epi-pen. Or let's not forget the awesome trip to the kids museum with grandma and grandpa we had a blast and absolutely loved it. They served ice cream in the foyer and this little boy who had ice cream running down his hand followed Dacotah to the point that after every single station I wiped his hands off, no it's not OCD it's preventing a trip to the ER. Thankfully it worked!
Shopping trips are nonexistent unless there are two of us. When we stop to get what we need he screams. He doesn't want in the buggy he doesn't want out, he wants to be held, but then he doesn't instead he screams, cries, and arches until we move to the next section of the store. Repeat above. If I have to go by myself it's less than 15 minutes 5 minutes of calm kid, 5 minutes of trying to distract him, and 5 minutes of sheer screeches By the time we get to the checkout he is a screaming mess, mommy is darn near in emotionally breakdown as I try to pay while keeping him from running out the door because he is done.
Car seats suck, yes I know they save countless lives. He hates them. He arches his back and screams not wanting to go in. Instead mommy holds on to him until he relaxes just a bit so I can have him safety strapped in. Hurry turn on the DVD player to snatch his attention so he forgets he is strapped in. (The DVD player had been the best investment for trips). Day trips seem to be better, but at nighttime watch out. Oncoming car lights freak him out and he screams and scratches himself, you can put a blanket up and he still screams because the pole lights lighting the side of the road are coming in the side window. Try calming him with toys that are thrown as he yells no no no....
The lack of talking, it's not that he can't, it's not that he won't, this one I have no explanation for... You see he use to say words lots of them, not perfect but he said words he use to say daddy, he use to say sissy, he would say ow, and beep beep, and then he stopped. In the past two months he may have said da da twice, but looks at his daddy and says mommy when he wants him to follow him, despite Travis constantly saying daddy, you want daddy to come with you.
Pain, it's as though it doesn't exist, he cut his foot the other day on a nail, all he said was mmmmmmmm ma, and turned his attention back to what he was doing. He has hit his head so hard on the wall at night it makes me cringe and it's as though nothing has happened.
Strength I have seen strong kids but when Dacotah has a freak out. Things get thrown. Heavy things up to 4 pounds that I know for sure of the weight are sent across the room like they are a sheet of paper. train tracks "granted they were merely nailed down" came up in a matter of seconds. Blocks can't be stacked up against the wall when we are done as the first thing he does is tear them back down again. We wait until he goes to bed to attempt to clean up the tornado sized mess.
So while yes on the outside Dacotah looks like the normal shy 2 year old that turns his head and turns his body toward mommy or daddy when someone approaches him. If you didn't know him you would think he's just a child suffering terrible twos when we are out in town. But until you live in our shoes please do not tell me you don't see anything wrong with our son.
I never asked for your opinion... In fact I ignored it for a year when someone (a doctor) mentioned he may have some sensory issues. My husband said I think he's fine, he will grow out of it. But when he walks into things repeatedly as though they aren't there, smacking his head against the way, or screaming when you touch his head it makes you second guess the him being oaky. So I took him to the peds office who saw him smack into the chair trying to get to the other side... Not once, twice, but multiple times. Took him to the eye doctor his vision is fine. Took him to the speech therapist he has obvious delays. Took him to OT yes we see this in sensory kids their vestibular system doesn't connect the brain connectors the way his brain should. So at this point with two physicians, two speech therapists, and two occupational therapists all in agreement I have to say no he isn't normal for his age, but that's okay, he has a strong support system and each day we will take it one step at a time and in the meantime I will come up with a nicer way to handle "he seems fine to me" comments so I'm not up at 4 am with it brewing through my mind.
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