To be honest I was going to go back and find my Facebook post but I don't have the brain power to search from my phone. So I'll retype it from memory.
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
Friday, July 29, 2016
Thursday, July 21, 2016
End of vacation
Vacation was nice even though Dacotah slept horrible and by horrible he was waking up every 60-90 min, every single night we were away. The last two nights were the worst when he woke up every 30-60 minutes and had a hard time going back to sleep. Definitely made for some long days.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
Monday, July 11, 2016
28 months June 28th missing post
This post is out of order and was suppose to show after OT Speech and other updates, on June 28th! I'll attempt to fix it after vacation
After months of little to no major milestones I started looking outside medicine in the sense that most people I know look at it. I have always been told there is always something out there that can help. Someone suggested a hearing test or maybe a pediatric sleep study but both of those were options because of Dacotah's Severe dislike of anything touching him. (My visual was things going flying across the room) ha! So, I called the local acupuncturist and asked if he could see Dacotah to see if the meridians were blocked (if you are unfamiliar Google is a good place to look). I just knew Britt could tell me something. He had me read a couple of pages in a textbook to see if anything fit Dacotah, it really didn't. He checked his pulses and his tongue and said everything looked fine and told me "your son is a puzzle, things seem like they should fit and they don't. There is a shaman (another name for a medicine man) named Phil, call him and see if he can help." We left Britt's office and I never felt more discouraged but also knew I had to keep fighting. If Dacotah has "gifts" that keep him from sleeping, talking or eating, that's fine but I needed to know for sure.
I called Phil and after asking me a couple of questions he says, "I'm sorry but I don't think I could help". My first words were damn it. Why is this so complicated.
Then I remembered about Reiki and how much it had helped me in the past. Googles definition of Reiki
- "a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being."So I sent a message to Willie and asked if she thought she could help. She agreed to meet up to see if there was anything she could do.I won't go into the logistics because I don't want a huge debate over what is or is not. But I can tell you this! That night was the first night in his life that Dacotah slept through the night!!!! Coincidence? I most certainly think not! I can tell you this I've never been so thankful in all my life.Yesterday Dacotah had very few screaming fits. He rode to the flea market in Wise with no DVD player without screaming! He was shy with people coming up and saying hi, but he was calm! The ride home was uneventful no screaming and no crying.I'll take the change and do so gladly.Dacotah started saying "bus" this past week, now EVERY THING is a bus! We get tickled and have to laugh. Last night we were laying and watching TV and Dacotah threw his tablet in the floor (yep he still loves throwing stuff) I have never seen two adults jump up so fast thinking he had fallen. Lol!We took him to the park before dinner to feed the ducks, he was willing to throw them food, but he wanted them to keep their distance and if not he backed away from them. It was too cute!I'm torn because I feel like we have taken a huge leap in the right direction, but later this morning he will go to the dentist for the first time, and in the afternoon he goes to see the developmental specialist. A week ago I would have been sure there was something underlying, but I have a renewed hope that other than SPD and a touch of OCD he will go on to do great things!
Fall Creek Falls Summer vacation day 1
Dacotah loves the outdoors and water so we decided to start vacation off at Fall Creek Falls in Pikeville Tn. It's a little over an hour drive off the TN 101. We started off with the 1.2 mile hike to the falls. Dacotah walked across the swinging bridge without a second thought while mommy was close behind trying not to freak out! Dacotah walked at least halfway before wanting to be carried. Now being carried wouldn't be a huge deal except he will not let daddy carry him, if Travis gets him he screams nonstop for Mom--------mie Mom----mie yeah you get the point. Over and over and over again even if I am right beside them. Thank God he started letting me carry him in the ergo again about a week ago! He doesn't like being wrapped but he is doing good with the ergo. Sad thing is with his weight I have to get Travis to help get him on my back, it works and I know he's safe, so off we went on up the mountain and the first bridge we came to he wanted down... Then he wanted me to carry him again, then he wanted down at the big turtle rock.... Anyway by the time we got to the falls overlook we were all a tired hot mess, and we forgot the drinks in the cooler in the van so we had a quick snack of chocolate teddy Grahams on the turtle rock. Dacotah took a tumble off the back, but thank God he came away with a tiny scratch! He traveled on back back and fell asleep on the way back to the picnic tables.
He slept on my back while we had turkey sandwiches, chips, and drinks. As soon as he woke up he wanted down again. So we took off to the cascades. You cannot keep this kid off of rock walls or out of water. Honestly there is no point in trying. He fell on his butt in the river, stood up and kept on trucking. Daddy had to come in with his tennis shoes on so we could watch both kids. Montana went down the rock slide, mommy too. Daddy went over to the big hole and did a can opener! On daddy's second try Dacotah counted him down with a one two!!!! Travis jumped in and hit his back on a rock... Dacotah decides he's done enough watching and so we found a small slide for him where daddy caught him at the bottom.
We went back to the calm stream and Montana and me went farther down to the top of the falls. Mommy slipped and fell as did Montana! Dacotah did NOT want to leave the water but when we let him climb the rocks back up the side of the hill he showed no fear and off he went. The doctor said kids with autism loves climbing, definitely fits this kiddo.
The ride back was uneventful but by the last 10-15 minutes he was hollering and wanting unbuckled; by the time we pulled in he couldn't wait to get out of the van.
After dinner grandma and papaw came over, Dacotah saw papaw and for the first time in a couple months he hollered out "Papaw"!!!!! We are over the moon. We all went to the indoor pool and Dacotah swam (I put a hand under him for support and tell him to swim) he uses his arms and kicks his feet and loves it! I really wish UVA@Wise didn't require pool passes for family members of the swim team, else I could take him swimming up there while sissy swims. Oh well we have our outdoor pool until the fall.
He has had a rough night. He's gotten up four times since 10 despite me giving him medicine at 11:30 to help him rest, he is super tired, and is awake as I'm writing this blog... I have a feeling it's going to be a very long night. (Don't worry I have cold coffee and milk in the fridge to get me through the morning lol!
He slept on my back while we had turkey sandwiches, chips, and drinks. As soon as he woke up he wanted down again. So we took off to the cascades. You cannot keep this kid off of rock walls or out of water. Honestly there is no point in trying. He fell on his butt in the river, stood up and kept on trucking. Daddy had to come in with his tennis shoes on so we could watch both kids. Montana went down the rock slide, mommy too. Daddy went over to the big hole and did a can opener! On daddy's second try Dacotah counted him down with a one two!!!! Travis jumped in and hit his back on a rock... Dacotah decides he's done enough watching and so we found a small slide for him where daddy caught him at the bottom.
We went back to the calm stream and Montana and me went farther down to the top of the falls. Mommy slipped and fell as did Montana! Dacotah did NOT want to leave the water but when we let him climb the rocks back up the side of the hill he showed no fear and off he went. The doctor said kids with autism loves climbing, definitely fits this kiddo.
The ride back was uneventful but by the last 10-15 minutes he was hollering and wanting unbuckled; by the time we pulled in he couldn't wait to get out of the van.
After dinner grandma and papaw came over, Dacotah saw papaw and for the first time in a couple months he hollered out "Papaw"!!!!! We are over the moon. We all went to the indoor pool and Dacotah swam (I put a hand under him for support and tell him to swim) he uses his arms and kicks his feet and loves it! I really wish UVA@Wise didn't require pool passes for family members of the swim team, else I could take him swimming up there while sissy swims. Oh well we have our outdoor pool until the fall.
He has had a rough night. He's gotten up four times since 10 despite me giving him medicine at 11:30 to help him rest, he is super tired, and is awake as I'm writing this blog... I have a feeling it's going to be a very long night. (Don't worry I have cold coffee and milk in the fridge to get me through the morning lol!
Sunday, July 10, 2016
And now you know the rest of the story
A voice from Forrest Gump went off in my head as I started writing this "you are a special kind of stupid aren't you" Gump replies "stupid is as stupid does"
No our children are not stupid but they are indeed special. We have always taken a different parenting approach with both of our kids, to outsiders it may look like we never discipline them, but I'm a firm believer in positive reenforcement and redirection. This comes from growing up with a mom who was super loving but was also very abusive. Travis and I decided that I we didn't want that for our kids". Our job is to keep them safe, love them,, shelter them and provide for them. I know we do all of that. Sadly many kids will never have that... Ours don't have to worry we have them and their needs taken care of.
I bring it up only because so many people have said there is nothing wrong with Dacotah, had I listened to the expert parents out there, I would have spanked him senseless for screaming and throwing stuff, I would have said you will sit down at the table and not get up until you puke up the food you can't tolerate to touch little lone taste. For Montana I would have spanked her for failing to tell a neighbor thank you for dinner because she forgot in a rush to get home. Instead she had to walk back over and apologize for forgetting to say thank you and then thank the lady for dinner. Also note she is one who almost always says thank you before I get a reminder out.
But you see it's the things the outsiders don't see that makes me rethink how I teach. I know my kids inside and out, I know that spanking is good for some instances but I also know psychologically there are better ways 90% of the time. Do I spank my kids, sure but it's when it's life threatening. Montana left the house without telling me, Dacotah ran out into the middle of the street, there are times that it is appropriate and the lesson is learned. I say all of this to bring us to the next point: church, yep it's a battleground Dacotah screams and flails his arms, out of exasperation we leave so not to disrupt the pastors teaching. I see the stares and the looks in restaurants when Dacotah has had enough over stimulation and melts down. I see the stares and hear the whispers when I leave everyone at home and have a moment just to be "me" this makes me a better parent it gives me a chance to refuel so I can deal with the constant clinging, screaming, scratching, and meltdowns without losing it... No he's not spoiled... But you see Dacotah has a reason, a medical diagnosis that on the outside you can't see.
Dacotah has autism, to what level we won't know until December, right now he is known as having "borderline autism" The developmental specialist is between mild and moderate autism level 1 or level 2 on the spectrum this the borderline diagnosis. Between the tests she gave last week and Friday's test she said even by the old autism standard before the spectrum came into play he would still be autistic. I was hoping she would say no. So here we are with a diagnosis, a treatment plan, and an ISFP with early intervention that will turn to an IEP when he's 3. Hopefully by the time he is 5, you won't be able to tell he is autistic, that's the long term goal. The short term speech and OT every week until Feb!
How does this change our current home and future. Honestly? I don't know. I'd like to say it's going to continue going just fine with leaps and bounds with both kids. Chances are highly likely that will not be the case but we will grow and adapt and find our normal. The diagnosis does not change how we feel about Dacotah as Travis says "he's our son". That's the truth and we will continue providing and making sure that him and Montana get the best life possible and know they are loved.
No our children are not stupid but they are indeed special. We have always taken a different parenting approach with both of our kids, to outsiders it may look like we never discipline them, but I'm a firm believer in positive reenforcement and redirection. This comes from growing up with a mom who was super loving but was also very abusive. Travis and I decided that I we didn't want that for our kids". Our job is to keep them safe, love them,, shelter them and provide for them. I know we do all of that. Sadly many kids will never have that... Ours don't have to worry we have them and their needs taken care of.
I bring it up only because so many people have said there is nothing wrong with Dacotah, had I listened to the expert parents out there, I would have spanked him senseless for screaming and throwing stuff, I would have said you will sit down at the table and not get up until you puke up the food you can't tolerate to touch little lone taste. For Montana I would have spanked her for failing to tell a neighbor thank you for dinner because she forgot in a rush to get home. Instead she had to walk back over and apologize for forgetting to say thank you and then thank the lady for dinner. Also note she is one who almost always says thank you before I get a reminder out.
But you see it's the things the outsiders don't see that makes me rethink how I teach. I know my kids inside and out, I know that spanking is good for some instances but I also know psychologically there are better ways 90% of the time. Do I spank my kids, sure but it's when it's life threatening. Montana left the house without telling me, Dacotah ran out into the middle of the street, there are times that it is appropriate and the lesson is learned. I say all of this to bring us to the next point: church, yep it's a battleground Dacotah screams and flails his arms, out of exasperation we leave so not to disrupt the pastors teaching. I see the stares and the looks in restaurants when Dacotah has had enough over stimulation and melts down. I see the stares and hear the whispers when I leave everyone at home and have a moment just to be "me" this makes me a better parent it gives me a chance to refuel so I can deal with the constant clinging, screaming, scratching, and meltdowns without losing it... No he's not spoiled... But you see Dacotah has a reason, a medical diagnosis that on the outside you can't see.
Dacotah has autism, to what level we won't know until December, right now he is known as having "borderline autism" The developmental specialist is between mild and moderate autism level 1 or level 2 on the spectrum this the borderline diagnosis. Between the tests she gave last week and Friday's test she said even by the old autism standard before the spectrum came into play he would still be autistic. I was hoping she would say no. So here we are with a diagnosis, a treatment plan, and an ISFP with early intervention that will turn to an IEP when he's 3. Hopefully by the time he is 5, you won't be able to tell he is autistic, that's the long term goal. The short term speech and OT every week until Feb!
How does this change our current home and future. Honestly? I don't know. I'd like to say it's going to continue going just fine with leaps and bounds with both kids. Chances are highly likely that will not be the case but we will grow and adapt and find our normal. The diagnosis does not change how we feel about Dacotah as Travis says "he's our son". That's the truth and we will continue providing and making sure that him and Montana get the best life possible and know they are loved.
Wednesday, July 6, 2016
4th of July
Now most kids I know love fireworks Dacotah loved watching them last year, this year was a little different. Two hours before it was dark we had a really nice storm blow in with a lot of lightening without the booms. He would look out and then go back to what he was doing. Usually with storms he's snuggled up again me or his daddy wondering if the house is going to fall in. (No, I don't know that for sure I can only imagine that's what he thinks)! We had debated going downtown which is all of 3 miles for us, but after big sister decided to go to a friends house after we had told her no, the decision was made we would watch them the best we could from our sunroom. (There is a tree line that about 1 in 10 fireworks makes it above so you can see them. The other nine changes the color of the sky around them which still looks pretty neat and you still hear the boom. Dacotah had me pick him up to walk out on the back porch, one look and he covered his face and pointed to go back inside. Between the colors and the sounds it was too much and he was done for the night. We run a fan and a sound machine in the bedroom which thankfully created enough white noise to drown out the neighbors setting fireworks off to all odd hours of the night.
Dacotah loves the outdoors, not a big deal except in the late evening "no see ums and mosquitos are out 100 fold" which of course leaves his arms and legs covered in big bites. :( but here is the interesting fact: bug bites itch me to death, Dacotah scratches the areas with no bites whatsoever, and the scratching is excessive even in his sleep, despite essential oils and steroid creams.
I would be lying if I didn't say I have had a lot on my mind in the past few days. If you have read my Facebook you would have seen where a family member said some pretty harsh things. I will be honest if it were just an outside family member I would have told them to shut up, but this one struck close to home. My dad is 71 and he had never been one to verbally attack me or say anything offhand to me or the kids. All of that changed when he told me I was wasting my time with speech and OT and nothing was going to change Dacotah. That was his point in a nutshell. I wonder if I heard him wrong, I know I didn't, I wish I had, then maybe it wouldn't have felt like he had slapped me across the face (which he has never done) but his words stung so much I had a very hard time processing it. I guess back when he was growing up there wasn't services widely available and that's what he was referring to, I don't know, quite honestly I don't care. After this post I'll never care to bring it up again, I will talk to my psychologist, process it and be rid of it.
So on to the good news, we had a privacy fence built around the front of our yard last summer as I've mentioned before. Dad came up yesterday evening and braced the door so it now opens and shuts so much easier. Before it would shift and get stuck on the sidewalk and we could barely get it open and shut. The problem has been fixed.
Amazing news: I've been working with Dacotah on signing thank you, and after about a week he had asked for a cookie and out of instinct (I still tell his sister even though she always beats me to it) "Say thank you" and he signed thank you!!!!!! Talk about one super proud mommy and daddy! It's honestly the small things that are the absolute best. I've thought about "baby signing time" and have brought it up on his YouTube he almost instantly loses interest in it. So maybe just one at a time will be good enough. He did notice the PECS cards on the fridge last night as well. It held his attention at least 2-3 minutes (age appropriate) and he pointed to all of the cards and had me say them over and over and over! *fingers crossed* we can start implementing it along with signing.
I'd be lying if I didn't say I was nervous for his appointment on Friday, prayers would be greatly appreciated.
I'm contemplating on trying to find an audiologist to see if they could possibly do a hearing test when he's under general anesthesia in August. I'm not sure how to get that set up so if anyone has experience with it, please feel free to share!
I'm getting a second opinion on his dental work just to make sure it's the best thing to do, putting your kid to sleep is not an easy decision so I want to make sure it's the right call.
I turned in is application for daycare in the fall, it's not so much that I need the daycare as I have a fabulous job that works with his needs and I am very greatful to have. We are sending him a minimum of 2 half days (he won't join his friends for lunch we will pick him up due to allergy concerns) so he can get more socialization with kids his age. We had the option for head start (which is free for kids like him), but I didn't feel it was the "best" option. I like the idea of him being in the same building with friends and church family who are familiar with him and who are willing to meet up to find out what needs to be done in the event of an emergency etc.
He's sleeping 2-4 hours at a stretch on any given night! This is a nice change since he was waking up every 2! Generally he will sleep 3.5-4 hours then wake up every 2.5-3.5 the rest of the night. So far tonight he started out with 3!
Disclaimer: I know I have a lot of grammar and run ons in the blog, please understand this is not suppose to be complete sentences as most are run on thoughts going through my head which causes me to be wide awake in the middle of the night. So I type it all out on my phone so I have notes for updates when he does new things or when I have concerns.
Dacotah loves the outdoors, not a big deal except in the late evening "no see ums and mosquitos are out 100 fold" which of course leaves his arms and legs covered in big bites. :( but here is the interesting fact: bug bites itch me to death, Dacotah scratches the areas with no bites whatsoever, and the scratching is excessive even in his sleep, despite essential oils and steroid creams.
I would be lying if I didn't say I have had a lot on my mind in the past few days. If you have read my Facebook you would have seen where a family member said some pretty harsh things. I will be honest if it were just an outside family member I would have told them to shut up, but this one struck close to home. My dad is 71 and he had never been one to verbally attack me or say anything offhand to me or the kids. All of that changed when he told me I was wasting my time with speech and OT and nothing was going to change Dacotah. That was his point in a nutshell. I wonder if I heard him wrong, I know I didn't, I wish I had, then maybe it wouldn't have felt like he had slapped me across the face (which he has never done) but his words stung so much I had a very hard time processing it. I guess back when he was growing up there wasn't services widely available and that's what he was referring to, I don't know, quite honestly I don't care. After this post I'll never care to bring it up again, I will talk to my psychologist, process it and be rid of it.
So on to the good news, we had a privacy fence built around the front of our yard last summer as I've mentioned before. Dad came up yesterday evening and braced the door so it now opens and shuts so much easier. Before it would shift and get stuck on the sidewalk and we could barely get it open and shut. The problem has been fixed.
Amazing news: I've been working with Dacotah on signing thank you, and after about a week he had asked for a cookie and out of instinct (I still tell his sister even though she always beats me to it) "Say thank you" and he signed thank you!!!!!! Talk about one super proud mommy and daddy! It's honestly the small things that are the absolute best. I've thought about "baby signing time" and have brought it up on his YouTube he almost instantly loses interest in it. So maybe just one at a time will be good enough. He did notice the PECS cards on the fridge last night as well. It held his attention at least 2-3 minutes (age appropriate) and he pointed to all of the cards and had me say them over and over and over! *fingers crossed* we can start implementing it along with signing.
I'd be lying if I didn't say I was nervous for his appointment on Friday, prayers would be greatly appreciated.
I'm contemplating on trying to find an audiologist to see if they could possibly do a hearing test when he's under general anesthesia in August. I'm not sure how to get that set up so if anyone has experience with it, please feel free to share!
I'm getting a second opinion on his dental work just to make sure it's the best thing to do, putting your kid to sleep is not an easy decision so I want to make sure it's the right call.
I turned in is application for daycare in the fall, it's not so much that I need the daycare as I have a fabulous job that works with his needs and I am very greatful to have. We are sending him a minimum of 2 half days (he won't join his friends for lunch we will pick him up due to allergy concerns) so he can get more socialization with kids his age. We had the option for head start (which is free for kids like him), but I didn't feel it was the "best" option. I like the idea of him being in the same building with friends and church family who are familiar with him and who are willing to meet up to find out what needs to be done in the event of an emergency etc.
He's sleeping 2-4 hours at a stretch on any given night! This is a nice change since he was waking up every 2! Generally he will sleep 3.5-4 hours then wake up every 2.5-3.5 the rest of the night. So far tonight he started out with 3!
Disclaimer: I know I have a lot of grammar and run ons in the blog, please understand this is not suppose to be complete sentences as most are run on thoughts going through my head which causes me to be wide awake in the middle of the night. So I type it all out on my phone so I have notes for updates when he does new things or when I have concerns.
Friday, July 1, 2016
Short Update
Not going to go into a lot of detail just yet. But we are having a few other tests done on Dacotah to see what all is going on. His sleep has started to improve with Reiki (A Japanese alternative that involves: a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being.) His sleep isn't perfect yet but I'll take waking every 3-4 hours over every 2 hours all night. He did have one night where he slept through the night!!! WHICH was a major lifesaver for mommy. It's always fun when you wake up and realize he's not woken up and you shake him and yell at him and he doesn't move, but then takes a big breath as if to say "LEAVE ME ALONE". Talk about a heart attack!
He is starting to babble. We've noticed over the past two weeks he will just jabber up a storm with his sister. We can't understand him, which is so frustrating, but he giggles and laughs with her.
He's started this frustrating thing where he asks for something to eat, beckoning for you to open it, you open it, and he refuses it, and goes and grabs another can of the exact same thing. I'm wondering if he likes the sound or something.
We took him to the dentist on Monday. We knew he had some bad cavities on his front teeth so I was expecting them to need to be filled. With Sensory Processing to the degree which he has, getting anything into his mouth (UNLESS he puts it there) is non-existent. Ask the ladies at the dentist who tried getting an xray film into his mouth. The weighted vest threw him into full on panic mode and he scream and squalled a good 15 minutes. So the dentist comes in and says he'd need crowns on the front (which will be white) and silver on the back teeth. All 16 teeth will be capped to prevent further tooth damage. It is our goal that by the time he is 5 and starts losing his baby teeth that OT and I have made progress and can get his toothbrush in his mouth to take care of them. August 16th, he will undergo general anesthesia at the children's hospital and the dental work will be done. The thought of putting him to sleep is scary but I know he's in good hands as Britt Bowers regularly does it with his special needs kids.
We took him to Dr. Cook Monday afternoon. Again I won't go into detail except to say she wants to see him again next Friday for another test and she ordered some labs on him. Once we have a diagnosis we will share once we have time to process anything that comes from the blood work or additional testing.
OT and Speech has been upgraded to once a week until he is 3 through early learning. At which time it's through the "school system" not sure of all that entails just yet, we will deal with that bridge when we get there.
He is starting to babble. We've noticed over the past two weeks he will just jabber up a storm with his sister. We can't understand him, which is so frustrating, but he giggles and laughs with her.
He's started this frustrating thing where he asks for something to eat, beckoning for you to open it, you open it, and he refuses it, and goes and grabs another can of the exact same thing. I'm wondering if he likes the sound or something.
We took him to the dentist on Monday. We knew he had some bad cavities on his front teeth so I was expecting them to need to be filled. With Sensory Processing to the degree which he has, getting anything into his mouth (UNLESS he puts it there) is non-existent. Ask the ladies at the dentist who tried getting an xray film into his mouth. The weighted vest threw him into full on panic mode and he scream and squalled a good 15 minutes. So the dentist comes in and says he'd need crowns on the front (which will be white) and silver on the back teeth. All 16 teeth will be capped to prevent further tooth damage. It is our goal that by the time he is 5 and starts losing his baby teeth that OT and I have made progress and can get his toothbrush in his mouth to take care of them. August 16th, he will undergo general anesthesia at the children's hospital and the dental work will be done. The thought of putting him to sleep is scary but I know he's in good hands as Britt Bowers regularly does it with his special needs kids.
We took him to Dr. Cook Monday afternoon. Again I won't go into detail except to say she wants to see him again next Friday for another test and she ordered some labs on him. Once we have a diagnosis we will share once we have time to process anything that comes from the blood work or additional testing.
OT and Speech has been upgraded to once a week until he is 3 through early learning. At which time it's through the "school system" not sure of all that entails just yet, we will deal with that bridge when we get there.
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