So I havn't blogged in a while, whats new.
Dalton got his school evals & we are optimistic. Pretty much he really didn't cooperate at all with any test takers. The speech & psychologist meeting somehow they got what they needed by asking us questions and somehow. In that assessment he literally did what he does at home, goes from one toy to the next, to the next. And oh man new toys? Seriously likes new toys... But in te preschool environment, both the teacher & the OT said he did not cooperate with testing. The teacher followed him around the classroom & saw what he did/how he interacted with toys. The OT asked us a bunch of questions. After all the evals, I am fairly confident he will get into the special ed preschool program in our district. We find out more about a month from now.
In other news we are getting Greysen ready a little for his fast approaching outpatient surgery. It is minor surgery as far as we have been told. But he still will go under general anesthesia & that is kinda scary. But I know we will get through good!
Not too much has been happening since then. I have been starting to feel depression coming on. Life is stressful & I don't talk about it much. I have had depression a few times as teen/ young adult. The last time I was able to get out from depression on my own. Here's to hoping some of my life stressers clear up. Rather downer way to end the post, but it is were I am right now.
Thursday, October 30, 2014
Monday, October 6, 2014
10-6-2014
Well it has been a month since i last blogged -woohoo... September has been a busy & emotional & big girl panties type of month. I am exhausted. I have been working diligently to get Dalton started with school in the fall. He is able to be tested to see if he can go to early childhood/special needs preschool. One main eligibility factor is an autism dx. Usually you can automatically get in your school district with that dx alone. But my son also has a fairly severe speech delay. He is about a year behind in what he should be saying/responding. We are working very diligently on his speech with a great local private therapist (so glad we made the switch out of birth to 3). And he does have some concerning sensory/OT needs that are being worked on as well, but would get more daily help through a school setting. So that has been fun & promising & stressful, but I am looking forward to the evals & learning how school can help him. Only downner with school is he will be in a school a few miles away instead of one that is like 5 minutes from our house, but it will work out in the end I hope.
I have also been getting really emotional about the lack of communication and different stories I have been told by the state about Dalton's waiver list placement. Our social worker who was my contact with the county was not great. She never initiated conversations about if she knew anything about how our file was progressing. Never gave encouragement & explanation of why our file took sooo long to be approved. I realize they are busy as all social workers are - I mean come on I was a foster parent - I get that social workers are very busy & overloaded individuals. I gave them the expected 2-3 month window before I contacted them regarding an update & once a month there after. I hadn't heard anything from her around late july & sought out info about county director of program contact info. I them got a prompt reply from both my contact & cty director in mid august.... Saying we were on the list & our # on the list. All right I thought - great! Well then I waited about six weeks to see if I was going to get any paperwork or at least a confirmation letter. I figured, again maybe she is busy. Maybe she didn't print it right away /didn't get around to it right away/maybe it got lost in the mail. But the truth is it was never sent. A week ago I sent an email to my contact casually saying hey haven't gotten any paperwork confirming we are indeed on list & it was returned undeliverable....AAGGGHH! Seriously was ticked. Went back to supervisor guy & sure enough she no longer was an employee of my county...sigh... So county supervisor/director attempted to answer my question with a VERY long explanation of how the waiver process works... Responded back, that I hadn't received the very first paper he mentioned. I sent it on thursday. Today I had my special needs moms bible study pray about this.... and I got an email late in the afternoon with exactly what I need, tomorrow I call the therapy provider. Also in communication with supervisor guy that no, we weren't approved for the list in august like we thought, nope it was may. Which is good & kinda sucky... It still means it took us about 5 months to be put on the list instead of the average 2-3.
So yeah that has all been happening, while still doing the normal therapy stuff & mom stuff. On a fun note - found a chew toy for Dalton! Yeah! (He is an oral sensory seeker, not hard core but more than your average kid) Found them at target of all places! So if you know me in real life, you will see Dalton sporting some girly bracelets!
I have just also been deep in thought lately about alot of thngs, my kids birth families, how am I going to raise a strong black man in this current state of police killing of black men. How am I going to teach my children to love everyone while also teaching Greysen to watch your back & be careful in public. Some days my mind just goes on & on. Some days all the different sides of what makes my children beautiful also makes me sad. It has been a rough week & I am ready to take a rest & break from it.
I have also been getting really emotional about the lack of communication and different stories I have been told by the state about Dalton's waiver list placement. Our social worker who was my contact with the county was not great. She never initiated conversations about if she knew anything about how our file was progressing. Never gave encouragement & explanation of why our file took sooo long to be approved. I realize they are busy as all social workers are - I mean come on I was a foster parent - I get that social workers are very busy & overloaded individuals. I gave them the expected 2-3 month window before I contacted them regarding an update & once a month there after. I hadn't heard anything from her around late july & sought out info about county director of program contact info. I them got a prompt reply from both my contact & cty director in mid august.... Saying we were on the list & our # on the list. All right I thought - great! Well then I waited about six weeks to see if I was going to get any paperwork or at least a confirmation letter. I figured, again maybe she is busy. Maybe she didn't print it right away /didn't get around to it right away/maybe it got lost in the mail. But the truth is it was never sent. A week ago I sent an email to my contact casually saying hey haven't gotten any paperwork confirming we are indeed on list & it was returned undeliverable....AAGGGHH! Seriously was ticked. Went back to supervisor guy & sure enough she no longer was an employee of my county...sigh... So county supervisor/director attempted to answer my question with a VERY long explanation of how the waiver process works... Responded back, that I hadn't received the very first paper he mentioned. I sent it on thursday. Today I had my special needs moms bible study pray about this.... and I got an email late in the afternoon with exactly what I need, tomorrow I call the therapy provider. Also in communication with supervisor guy that no, we weren't approved for the list in august like we thought, nope it was may. Which is good & kinda sucky... It still means it took us about 5 months to be put on the list instead of the average 2-3.
So yeah that has all been happening, while still doing the normal therapy stuff & mom stuff. On a fun note - found a chew toy for Dalton! Yeah! (He is an oral sensory seeker, not hard core but more than your average kid) Found them at target of all places! So if you know me in real life, you will see Dalton sporting some girly bracelets!
I have just also been deep in thought lately about alot of thngs, my kids birth families, how am I going to raise a strong black man in this current state of police killing of black men. How am I going to teach my children to love everyone while also teaching Greysen to watch your back & be careful in public. Some days my mind just goes on & on. Some days all the different sides of what makes my children beautiful also makes me sad. It has been a rough week & I am ready to take a rest & break from it.
Monday, September 1, 2014
When things get hard
** If you are immediate family I do not want to know if you came here & I do not want to chat about this blog in person. This is my safe haven, my journel of sorts. **
Ok so now that we have that out of the way... life has been rough on this trip. The boys have been enjoying the beach & so have I. Kevin has had to chase Dalton too many times to count. Everyone has gotten a little water time. Dalton had a taste of my lobster salad sammy & was not pleased!
We went sight seeing too. We went to WHOI in Woods Hole & saw the fish & seals. Dalton being Dalton spent all of 15 minutes in there... sigh. They had a feely tank where you could feel crab & snails & some other sea creatures, he enjoyed it for a minute, 2 tops. We have eaten a good share of donuts, had pizza, gift shopped, fought with Dalton in said gift shops (his compulsivity gives him the "I want to touch EVERYTHING as much as I can" trait. We also just chilled in the house once or twice. He got to watch TV & play on his IPad. (A note about these...I personally feel educational tv & educational apps are fine. ) I do "moderate" what he can watch/see, but yeah he can watch tv movies at my house) <----- Why I feel the need to explain I dunno.
Things have gotten a little crazy here at least once or twice a day, but that is par for the course with toddlers. Dalton likes to investigate & got into all the games around the houe at one point or another.
We are blessed to be able to take this trip & to have my parents let us say here, but it is somewhat getting long. My parents are here now so maybe hubby & I can get a date night? Or at least go out on our own to Ptown again tomorrow. So I am signing off for the day, today was rough, but I am not prepared to talk about it yet. A lot of clashing of parenting my kids. my mother feels one way & I feel another. While I am the mother, apparently my voice doesn't count around her... Had a good walk & a fairly good cry. I am just so frustrated, it has been this way since my kids came to me...
Ok so now that we have that out of the way... life has been rough on this trip. The boys have been enjoying the beach & so have I. Kevin has had to chase Dalton too many times to count. Everyone has gotten a little water time. Dalton had a taste of my lobster salad sammy & was not pleased!
We went sight seeing too. We went to WHOI in Woods Hole & saw the fish & seals. Dalton being Dalton spent all of 15 minutes in there... sigh. They had a feely tank where you could feel crab & snails & some other sea creatures, he enjoyed it for a minute, 2 tops. We have eaten a good share of donuts, had pizza, gift shopped, fought with Dalton in said gift shops (his compulsivity gives him the "I want to touch EVERYTHING as much as I can" trait. We also just chilled in the house once or twice. He got to watch TV & play on his IPad. (A note about these...I personally feel educational tv & educational apps are fine. ) I do "moderate" what he can watch/see, but yeah he can watch tv movies at my house) <----- Why I feel the need to explain I dunno.
Things have gotten a little crazy here at least once or twice a day, but that is par for the course with toddlers. Dalton likes to investigate & got into all the games around the houe at one point or another.
We are blessed to be able to take this trip & to have my parents let us say here, but it is somewhat getting long. My parents are here now so maybe hubby & I can get a date night? Or at least go out on our own to Ptown again tomorrow. So I am signing off for the day, today was rough, but I am not prepared to talk about it yet. A lot of clashing of parenting my kids. my mother feels one way & I feel another. While I am the mother, apparently my voice doesn't count around her... Had a good walk & a fairly good cry. I am just so frustrated, it has been this way since my kids came to me...
Monday, August 11, 2014
Polymicrogyria
Poly = many micro = small gyria = wrinkles in the brain.
That is the brain disorder my son was born with. Truthfully for us, it is not a scary diagnosis. Polymicrogyria can be a very scary disorder though, it all depends on how much of the brain is affected. Greysen is lucky that he has it in one fairly tiny area on one side of his brain. He can do everything a normal 18m old can do - just at a slightly delayed timeline. There are some people with a profound disorder called bilateral persivilian polymicrogyria, as well as bilateral polymicrogyria. The youth who have those two versions of pmg are usually non verbal, wheelchair bound, cognitive delayed, and have other health problems as well. Most people who have the 2 versions mentioned about have a lot of seizure activity, which then harms the brain further. Some children pass away at a young age because of seizures caused by PMG. It can be a very sad diagnosis.
So how does PMG effect Greysen? Well, we have only had developmental challenges, but will likely have educational challenges once entering school due to the area of his brain affected & the general thought he probably has some amount of brain cell disorganization. We are lucky he has not had a seizure yet (although we did have seizure scare early on) but he has a much higher than normal risk of having one. But the good thing about PMG is it is not a degenerative disorder. Once the damage is done, it is done. Seizures can cause more damage to the brain though.
So is Greysen in therapy? What is the outcome? Greysen currently is not in therapy. He graduated PT. He completed all his goals. He started PT when he was 9m old. He was not crawling & had mastered sitting just 2 months earlier when we started. He also started speech therapy about the same time & has since completed those goals as well. He is on a recurring check for both speech & PT. He is also followed by a developmental team from his birth hospital. Recently had an eval from them & they are concerned he is behind on knee strength & agree his arm/hand favoritism is a little odd. We know he will need an occasional "tweeking" of therapy. Knee therapy will be conducted at home by mama... Pretty much have to have him walk up & down steps-not crawl.
The outcome for Greysen is unknown. At this rate - good with a few set backs here and there. The real question is will he have seizures? That we wont know until he has one. He likely will have trouble with school. Probably wont qualify for an iep (we have time to guess if needed) but may need extra teaching time. His PMG is unilateral frontal, so that area of the brain is the reading/writting/general learning delays.
When we got the call for Greysen we were beyond scared & kinda stumped. We were told he would need SOO much therapy - way more than he has had. And also we were told we would not need to be followed by a neuro - wich we were like huh? In the end he got a neuro after his hospital adventure @ 3m & we have been on the right track!
Greysen also has two other brain malformations that likly wont affect him, but may affect him. He has absence of the septum pellucidum & partial agenesis of the corpus callosum. So in other words he does not have as many wires connecting the 2 halves of his brain as he should. He also does not have the coating that covers inbetween the two halves of the brain & this covering covers part of the corpus callosum. These two items should have very little affect to him!
If you want to read more about PMG please check out the following links!
http://pmgawareness.org/
http://raisingdanielhasselberger.blogspot.com/ she has a youtube as well. Her son is way at the other end of pmg
http://www.schuylersmonsterblog.com/ - he has also written a book about his daughter who has bilateral persiilan pmg
That is the brain disorder my son was born with. Truthfully for us, it is not a scary diagnosis. Polymicrogyria can be a very scary disorder though, it all depends on how much of the brain is affected. Greysen is lucky that he has it in one fairly tiny area on one side of his brain. He can do everything a normal 18m old can do - just at a slightly delayed timeline. There are some people with a profound disorder called bilateral persivilian polymicrogyria, as well as bilateral polymicrogyria. The youth who have those two versions of pmg are usually non verbal, wheelchair bound, cognitive delayed, and have other health problems as well. Most people who have the 2 versions mentioned about have a lot of seizure activity, which then harms the brain further. Some children pass away at a young age because of seizures caused by PMG. It can be a very sad diagnosis.
So how does PMG effect Greysen? Well, we have only had developmental challenges, but will likely have educational challenges once entering school due to the area of his brain affected & the general thought he probably has some amount of brain cell disorganization. We are lucky he has not had a seizure yet (although we did have seizure scare early on) but he has a much higher than normal risk of having one. But the good thing about PMG is it is not a degenerative disorder. Once the damage is done, it is done. Seizures can cause more damage to the brain though.
So is Greysen in therapy? What is the outcome? Greysen currently is not in therapy. He graduated PT. He completed all his goals. He started PT when he was 9m old. He was not crawling & had mastered sitting just 2 months earlier when we started. He also started speech therapy about the same time & has since completed those goals as well. He is on a recurring check for both speech & PT. He is also followed by a developmental team from his birth hospital. Recently had an eval from them & they are concerned he is behind on knee strength & agree his arm/hand favoritism is a little odd. We know he will need an occasional "tweeking" of therapy. Knee therapy will be conducted at home by mama... Pretty much have to have him walk up & down steps-not crawl.
The outcome for Greysen is unknown. At this rate - good with a few set backs here and there. The real question is will he have seizures? That we wont know until he has one. He likely will have trouble with school. Probably wont qualify for an iep (we have time to guess if needed) but may need extra teaching time. His PMG is unilateral frontal, so that area of the brain is the reading/writting/general learning delays.
When we got the call for Greysen we were beyond scared & kinda stumped. We were told he would need SOO much therapy - way more than he has had. And also we were told we would not need to be followed by a neuro - wich we were like huh? In the end he got a neuro after his hospital adventure @ 3m & we have been on the right track!
Greysen also has two other brain malformations that likly wont affect him, but may affect him. He has absence of the septum pellucidum & partial agenesis of the corpus callosum. So in other words he does not have as many wires connecting the 2 halves of his brain as he should. He also does not have the coating that covers inbetween the two halves of the brain & this covering covers part of the corpus callosum. These two items should have very little affect to him!
If you want to read more about PMG please check out the following links!
http://pmgawareness.org/
http://raisingdanielhasselberger.blogspot.com/ she has a youtube as well. Her son is way at the other end of pmg
http://www.schuylersmonsterblog.com/ - he has also written a book about his daughter who has bilateral persiilan pmg
Friday, August 8, 2014
Sweet Dalton
Today you were SOO good little man! You went pee pee in the potty 5 times!! You were so good going shopping with mama today, even with your verbal stimms... But the thing I have been enjoying most are your night time snuggles. It is the one time of day you seam ok with some physical touch/cuddling. I love spending the time whispering with you & giving you a back rub & just cuddling up to you. I can't believe I have the privilege to be your mama! I love you sweet lil guy! Evenings like this take away all the hard days. Thank you for being my cuddle bug! Love you!
Saturday, August 2, 2014
August Blog Plans
So August is a busy month this year! We have my birthday, hubbsters bday, Dalton's 2nd adoptiversary, and trip going.
I have one blog in progress to post in regards to Greysen's medical dx. But other than that I dont have planned ideas. It will be a crazy month so I cant guarantee a lot of content!
Stay tuned for more!
I have one blog in progress to post in regards to Greysen's medical dx. But other than that I dont have planned ideas. It will be a crazy month so I cant guarantee a lot of content!
Stay tuned for more!
Wednesday, July 30, 2014
Junior Preschool
So Dalton just had his last Jr preschool class. I think he was the youngest in his class. The class was advertised for 3-4 yo - at least in the group run by his speech therapist, but she wanted him in it.
They did lot of cute art projects & he learned his shapes fairly solidly in the class. He knew his shapes somewhat before hand, but now he is a pro - we are still working on him naming them. We have to pretty much say "where is the..." then he will point & say it. If you were to say "what is this" he will answer "this". Our therapist recognized this a few weeks back & has started to incorporate yes/no question into his therapy. She said that is the easiest to learn then they move on to "who/what/were/when questions.
His class was made up of 6 or 7 kids who had mostly speech delays, so although he was younger he was fairly level with most of the class speech wise.
I also learned that while he reacts to auditory stimuli (mostly loud groups) at first in group he warms up & interacted nicely! We know he reacts to over stimulation of audio input, but it was nice to have some proof that others see it too & that we arent the only people that see the symptoms/characteristics of autism in our son. It is hard to live with family & friends who see nothing more than a speech delay...
Anyhow, also after the last class he had speech like the past few weeks. And I was reminded again of what I will have to start doing. In early to mid september I need to contact my local school & get him evaluated for 3 yo preschool & get him an iep. He should qualify for both speech delay & autism dx, but we will see how this all goes. I am nervous of him borderline not qualifying. I cant believe my baby will be possible starting school in january. And yet I am still waiting to freaking get added to the waiver list. Folks we are 7+ months into waiting to be qualified to be approved for ssi to be added to the waiver wait list. Average time for this is 2-3 months. Our worker is of NO USE - or at least it feels that way. She always just says she has nothing new for me when i ask status & has no info of people higher up I can contact about it... because really at this point it is crazy & i am ticked. Because once we get approved to be on the waiver wait list it can take up to 2 years just to "get your number called" so to speak to get therapy started. Ugh so aggravated with it!
Well i guess this post got a little ranty! Ha!
They did lot of cute art projects & he learned his shapes fairly solidly in the class. He knew his shapes somewhat before hand, but now he is a pro - we are still working on him naming them. We have to pretty much say "where is the..." then he will point & say it. If you were to say "what is this" he will answer "this". Our therapist recognized this a few weeks back & has started to incorporate yes/no question into his therapy. She said that is the easiest to learn then they move on to "who/what/were/when questions.
His class was made up of 6 or 7 kids who had mostly speech delays, so although he was younger he was fairly level with most of the class speech wise.
I also learned that while he reacts to auditory stimuli (mostly loud groups) at first in group he warms up & interacted nicely! We know he reacts to over stimulation of audio input, but it was nice to have some proof that others see it too & that we arent the only people that see the symptoms/characteristics of autism in our son. It is hard to live with family & friends who see nothing more than a speech delay...
Anyhow, also after the last class he had speech like the past few weeks. And I was reminded again of what I will have to start doing. In early to mid september I need to contact my local school & get him evaluated for 3 yo preschool & get him an iep. He should qualify for both speech delay & autism dx, but we will see how this all goes. I am nervous of him borderline not qualifying. I cant believe my baby will be possible starting school in january. And yet I am still waiting to freaking get added to the waiver list. Folks we are 7+ months into waiting to be qualified to be approved for ssi to be added to the waiver wait list. Average time for this is 2-3 months. Our worker is of NO USE - or at least it feels that way. She always just says she has nothing new for me when i ask status & has no info of people higher up I can contact about it... because really at this point it is crazy & i am ticked. Because once we get approved to be on the waiver wait list it can take up to 2 years just to "get your number called" so to speak to get therapy started. Ugh so aggravated with it!
Well i guess this post got a little ranty! Ha!
Thursday, July 24, 2014
The other "A" word
So forgive me! I really didn't blog much when Greysen (Tbug) was in our home, since we were busy with a lot of medical stuff for both kids.
We were placed with Greysen very shortly after Dalton's first birthday. Greysen was a 1 month old & yes I know... my kids are super close, yup i know. We were told in broad strokes of what Greysen had medically wrong, but finite details were never covered. We were only the foster parents & the interested relative was going to take him between 1-3 months from then...
G got really sick at about 3 months & even had a 2 night (ehm technically 3 if you count the fact we didn't get a room until 2am the next day after we came to the er.) hospital stay. A crap load of tests were run. We were asked if he had brain abnormalities, we said yes, but we didn't know what, which is the worst things to say about your kid... but we really didn't know. Anyhow test after test came back normal, they did a sedation mri after tracking biomom down. We got clearer info about his brain. Gotta say we were kinda scared for his future & we still are. Bottom line, one area of his brain has more little ripples than it should. He has two other minor brain malformations that really shouldnt effect him. But he does have a higher than normal risk of seisures - so we are careful!
That same summer (last summer) we had questions about Dalton & our pediatrition was in disbelief of what I was thinking. But being the people who know our son best, we went and got him evaluated. We had discussed a lot privately & even taken M-Chat test/evaul in our home before getting him evaluated. Yep he came back with an autism dx. And a little higher on the spectrum than we thought. We knew in our hearts he was autistic before we were told so. While we "knew" it, it was pretty hard for someone to actually tell us as such.
Many people think we are crazy. Many people do not see how he can have this diagnosis - he looks perfect after all! Autism for some is a somewhat hidden disorder. It effects the brain & if you don't know what you're looking for you don't see it.
Some things that Dalton does is considered "stimming." He flaps his arms while excited, lines things up, needs to kick/jump to wind himself down, and others. He is a bolter, gets quiet & non verbal in somewhat loud environments (think a bday party), stripping clothes often because of the tag-is always irritated with tags. Refuses toothbrushing (unless it is on his terms ...doesnt work well) Hates hair combing, prefers to avoid body contact w/ others & more. With all that makes him unique, I wouldn't change him for the world, I love him dearly.
Our biggest challenge now with him is getting him services.... We currently are waiting to wait....
So I will be trying some at home ideas to improve his speech & help him with sensory issues. Our short term goal is to get his iep started in fall & hopefully get him enrolled in school in January.
Kinda jumping around. After we got Dalton diagnosed we switched to a new (awesome) speech therapy program that we had finally gotten Greysen into. The months kept ticking along. Birthmom was not involved in the case for Greysen at all, but she kept mentioning guardianship -that she is willing to give us gaurdianship. That doesnt exactly work for her to do that for us as we didnt know her before his birh as i guess that is part of the rule of who can get gaurdianship. Anyhow, we went to court in late 2013 with the hopes she would voluntarily give up her rights. It was highley thought she would. She didn't. We went back to court late january 2014 kind of unsure how the case was going to progress. Sure enough, she decided to put Greysen first & surrender her rights. We were unsure if she would appeal, but she didn't. So we adopted our son Greysen in early april & life has continued ticking on!
Very shortly after we adopted Greysen we closed our home & license. I have a different perspective going through this than I did when I started. I personally think in 5-10 years from now, we will open our home again, but even if we don't I will volunteer or be involved somehow in the foster system. It is one screwed up system, but I was blessed with two little boys.
Ok so were is this blog going? I started this about when we started the adoption journey & now I am done. Well I hope to bring daily life to this blog. I hope to share some ideas we are using for the kids to help them learn. I hope to bring the ups & downs of life with 2 special needs kiddos! Stay tuned :)
We were placed with Greysen very shortly after Dalton's first birthday. Greysen was a 1 month old & yes I know... my kids are super close, yup i know. We were told in broad strokes of what Greysen had medically wrong, but finite details were never covered. We were only the foster parents & the interested relative was going to take him between 1-3 months from then...
G got really sick at about 3 months & even had a 2 night (ehm technically 3 if you count the fact we didn't get a room until 2am the next day after we came to the er.) hospital stay. A crap load of tests were run. We were asked if he had brain abnormalities, we said yes, but we didn't know what, which is the worst things to say about your kid... but we really didn't know. Anyhow test after test came back normal, they did a sedation mri after tracking biomom down. We got clearer info about his brain. Gotta say we were kinda scared for his future & we still are. Bottom line, one area of his brain has more little ripples than it should. He has two other minor brain malformations that really shouldnt effect him. But he does have a higher than normal risk of seisures - so we are careful!
That same summer (last summer) we had questions about Dalton & our pediatrition was in disbelief of what I was thinking. But being the people who know our son best, we went and got him evaluated. We had discussed a lot privately & even taken M-Chat test/evaul in our home before getting him evaluated. Yep he came back with an autism dx. And a little higher on the spectrum than we thought. We knew in our hearts he was autistic before we were told so. While we "knew" it, it was pretty hard for someone to actually tell us as such.
Many people think we are crazy. Many people do not see how he can have this diagnosis - he looks perfect after all! Autism for some is a somewhat hidden disorder. It effects the brain & if you don't know what you're looking for you don't see it.
Some things that Dalton does is considered "stimming." He flaps his arms while excited, lines things up, needs to kick/jump to wind himself down, and others. He is a bolter, gets quiet & non verbal in somewhat loud environments (think a bday party), stripping clothes often because of the tag-is always irritated with tags. Refuses toothbrushing (unless it is on his terms ...doesnt work well) Hates hair combing, prefers to avoid body contact w/ others & more. With all that makes him unique, I wouldn't change him for the world, I love him dearly.
Our biggest challenge now with him is getting him services.... We currently are waiting to wait....
So I will be trying some at home ideas to improve his speech & help him with sensory issues. Our short term goal is to get his iep started in fall & hopefully get him enrolled in school in January.
Kinda jumping around. After we got Dalton diagnosed we switched to a new (awesome) speech therapy program that we had finally gotten Greysen into. The months kept ticking along. Birthmom was not involved in the case for Greysen at all, but she kept mentioning guardianship -that she is willing to give us gaurdianship. That doesnt exactly work for her to do that for us as we didnt know her before his birh as i guess that is part of the rule of who can get gaurdianship. Anyhow, we went to court in late 2013 with the hopes she would voluntarily give up her rights. It was highley thought she would. She didn't. We went back to court late january 2014 kind of unsure how the case was going to progress. Sure enough, she decided to put Greysen first & surrender her rights. We were unsure if she would appeal, but she didn't. So we adopted our son Greysen in early april & life has continued ticking on!
Very shortly after we adopted Greysen we closed our home & license. I have a different perspective going through this than I did when I started. I personally think in 5-10 years from now, we will open our home again, but even if we don't I will volunteer or be involved somehow in the foster system. It is one screwed up system, but I was blessed with two little boys.
Ok so were is this blog going? I started this about when we started the adoption journey & now I am done. Well I hope to bring daily life to this blog. I hope to share some ideas we are using for the kids to help them learn. I hope to bring the ups & downs of life with 2 special needs kiddos! Stay tuned :)
Friday, March 14, 2014
Dear Grandpaents of my Son...
Thank you for being the caring grandparents I know you are. D loves you and that is mostly what matters.
But I am a little pissed. I cant actually write you because you wouldn't get it. You wouldn't get my anger, and I don't have the time or patience to explain it.
D has autism. Just please believe me. You may say "oh just wait till he is 5 to make any decisions" or "he seems to be doing so good" or " He's only 2 you can't know for sure"
We know for sure.
You spend 20 hrs with him & think you know him so well. Do you pay attention to him toe walking... or toe running? That is a characteristic of ASD. Do you see him flitting from one toy to another with not much actual pretend play? That is a characteristic of ASD. Do you notice how, while he has some words, he doesn't have as many as he should? Do you know by age 2 he should have a minimum of 50 words? D has maybe 25... Do you also see him flapping his arms while excited? Or how if he goes into any unfamiliar surrounding he gets upset? Or see him pat all the flowers instead of swimming in his play pool? Or lining up his cars or farm animals just right? Or see him arrange & rearrange his toys in his crib? Do you see me calling his name 3 or 4 times before he looks IF he looks? I didn't think so... You just don't see it. You don't see the other characteristics of autism. You see the lack of words. You tease because we encourage him to talk with his hands (asl) or voice. You complain when we change his food. We are his parents. We are the ones taking care of him day in & day out. Please don't feel you know best with him. Please shut up when I give MY son dairy free items or eventually gluten free items. I am just tired of it all. Parenting D is hard. I am guessing you havent taken him to a play center to have him promptly run off & ignore you as if you didn't exsist. I have to mentally prepare for taking my son to things like this.
Also side note... stop telling me two so close together is hard. Yes it is hard, it is what I chose. I love my boys to the moon & back. I am happy at how our family was built. Your kids were 8 yrs apart... so you have no idea how it REALLY is. Also while I am ranting... WTH right do you think you have to tell me how many children we should have/adopt? That is hubby & my decision ALONE! I realize kids are pricey & I realize that they are a lot of work, but you have absolutely no right to tell me how big our family should be. UGH... I am done ranting..... Hoping to put up a review of a dairy free cheese we have tried soon!
But I am a little pissed. I cant actually write you because you wouldn't get it. You wouldn't get my anger, and I don't have the time or patience to explain it.
D has autism. Just please believe me. You may say "oh just wait till he is 5 to make any decisions" or "he seems to be doing so good" or " He's only 2 you can't know for sure"
We know for sure.
You spend 20 hrs with him & think you know him so well. Do you pay attention to him toe walking... or toe running? That is a characteristic of ASD. Do you see him flitting from one toy to another with not much actual pretend play? That is a characteristic of ASD. Do you notice how, while he has some words, he doesn't have as many as he should? Do you know by age 2 he should have a minimum of 50 words? D has maybe 25... Do you also see him flapping his arms while excited? Or how if he goes into any unfamiliar surrounding he gets upset? Or see him pat all the flowers instead of swimming in his play pool? Or lining up his cars or farm animals just right? Or see him arrange & rearrange his toys in his crib? Do you see me calling his name 3 or 4 times before he looks IF he looks? I didn't think so... You just don't see it. You don't see the other characteristics of autism. You see the lack of words. You tease because we encourage him to talk with his hands (asl) or voice. You complain when we change his food. We are his parents. We are the ones taking care of him day in & day out. Please don't feel you know best with him. Please shut up when I give MY son dairy free items or eventually gluten free items. I am just tired of it all. Parenting D is hard. I am guessing you havent taken him to a play center to have him promptly run off & ignore you as if you didn't exsist. I have to mentally prepare for taking my son to things like this.
Also side note... stop telling me two so close together is hard. Yes it is hard, it is what I chose. I love my boys to the moon & back. I am happy at how our family was built. Your kids were 8 yrs apart... so you have no idea how it REALLY is. Also while I am ranting... WTH right do you think you have to tell me how many children we should have/adopt? That is hubby & my decision ALONE! I realize kids are pricey & I realize that they are a lot of work, but you have absolutely no right to tell me how big our family should be. UGH... I am done ranting..... Hoping to put up a review of a dairy free cheese we have tried soon!
Were this blog is going
So I know I don't write here often. Heck I haven't since late November!
I want to get back into blogging. My family is settling down. We are adopting T/G soon. We will be closing our license then.
But I have been having a hard time finding hope lately. I am tired of fighting our battle our selves. At least it is what it feels like. My eldest son is autistic and I am having a hard time coping with all the options out there. I cant deal with the disbelief's. We are currently on the wait to be put on the waiver wait list. It feels like it has taken forever. He is in speech. We just switched providers a few weeks back. I love our therapist! I am sad at how behind he is verbally. Just for reference his expressive language (what he says) is worse than a 12m old...
What I hope this blog becomes... is a safe haven for me to rant. A place to review products we are using with/for our son. I also hope this to be a general home to journal my feelings & day to day goings on. So join me on this journey!
I want to get back into blogging. My family is settling down. We are adopting T/G soon. We will be closing our license then.
But I have been having a hard time finding hope lately. I am tired of fighting our battle our selves. At least it is what it feels like. My eldest son is autistic and I am having a hard time coping with all the options out there. I cant deal with the disbelief's. We are currently on the wait to be put on the waiver wait list. It feels like it has taken forever. He is in speech. We just switched providers a few weeks back. I love our therapist! I am sad at how behind he is verbally. Just for reference his expressive language (what he says) is worse than a 12m old...
What I hope this blog becomes... is a safe haven for me to rant. A place to review products we are using with/for our son. I also hope this to be a general home to journal my feelings & day to day goings on. So join me on this journey!
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