I still do not have much to update, we haven't heard anything back from the school. I'm a little frustrated by the whole thing. Why does getting my little man the help he needs have to be so difficult and exhausting? We have considered relocating to ensure that Mr N gets the help he needs without such a burden on us. I called and spoke with the director of the preschool services in an area we are considering. Actually, I called and left a message, dreading the wait for a call back. Surprisingly she called back within a couple of hours. She was very helpful, explained the services they provide for 3-5 year olds and how all of the teachers in their preschools have their masters in early education, each school they serve is equipped with a speech pathologist, occupational therapist and physical therapist. In order to get him started we would merely bring his current IEP, his records and paperwork.
I'll be honest, I was completely floored by her response, I fully expected her to say they are short staffed, under budgeted, etc and that I should look elsewhere. I did not expect her to encourage us to come there and that they would love to have Mr N. I expected the same kind of procrastination and deflecting that we receive here. We've been told by people here that if we really want services we would be wise to move to other areas (out of their jurisdiction). Seriously? No wonder California has such poor reviews for autism services. Of course, I doubt every regional center is the same but they do not inspire my confidence in them when I'm expected to leave my very precious child in their very nonchalant hands.
Relocating involves so many variables, it is such a stressful thing to contemplate. For one, we just bought our house a year ago and we haven't finished remodeling. So we would be forced to sell a partially renovated home, in a less than ideal housing market. Second, we have to consider that Daddy may not be able to keep his job, that he loves. How do we deal with that? How does one go about requesting that their company allow them to relocate across the country, but keep their job? If that is not allowed, how could Daddy possibly find a job that he enjoys as much as this one?
Having a child with special needs certainly requires various sacrifices to insure the best possible future for the child, but choosing what to sacrifice is so very difficult. Do we sacrifice job? Do we sacrifice location? Do we sacrifice sanity?
My little man has so much to offer, so much progress to make, he can go places, but he really needs his therapies. I've seen what he can do, I've watched him make huge strides forward, I've seen struggles fall by the wayside as he moves forward. I don't want this to be his ending point, I want him continually moving forward, I want to see further progress. I want to see how far he can go. I have high hopes for him, but he can not do it without help.
I have spent countless hours praying for guidance and direction, hoping the path for our future is revealed giving us confidence about our decisions soon. The uncertainty of our future has become a major stressor.
Right now Mr N is crawling around with his head pushed down on the floor. I have to laugh, because when we were kids we used to love doing that at my grandparents house. I'm not sure why we only did it there, but we did, up and down the hall for hours. Mr N's pretend play has really been increasing lately, pretending to be a cat or dog with his sissy, is one of their favorite things to do.
Wednesday, March 20, 2013
Dentist Day
Today was the dreaded day at the dentist. Well the kids didn't dread it, E was excited about going and Mr N didn't seem to mind much.....until we got there. He actually did pretty good until sissy went back and started having her X-rays done. Then he opted to go into full meltdown mode, no number of TVs, toys, balloons or nice people were going to get in his way.
E did great with her X-rays, cleaning and exam, she doesn't have any cavities, which is a relief.Mr N only got an exam while sitting on my lap, but at least the dentist got to look at all of his teeth and said everything looked good. After they finished up Mr Ns exam I Headed outside with him while our friend Jessica stayed with E to have her exam done. He didn't want back in the car, so we stood outside and hugged for a bit. I fought back tears windering if I'd ever be able to understand what bothered my precious son so much. Will he ever be able to express his fears and worries? Will I always be near tears as we leave any kind of appointment for him? A simple dentist appointment should not be so emotionally exhausting.
Hopefully we can find another great dentist when we move and Mr N will eventually get used to him and make things easier down the road. I hope I'm not expecting too much. I'm so optimistic that speech therapy will enable Mr N to verbalized his fear and enable us To better calm and help him.
E did great with her X-rays, cleaning and exam, she doesn't have any cavities, which is a relief.Mr N only got an exam while sitting on my lap, but at least the dentist got to look at all of his teeth and said everything looked good. After they finished up Mr Ns exam I Headed outside with him while our friend Jessica stayed with E to have her exam done. He didn't want back in the car, so we stood outside and hugged for a bit. I fought back tears windering if I'd ever be able to understand what bothered my precious son so much. Will he ever be able to express his fears and worries? Will I always be near tears as we leave any kind of appointment for him? A simple dentist appointment should not be so emotionally exhausting.
Hopefully we can find another great dentist when we move and Mr N will eventually get used to him and make things easier down the road. I hope I'm not expecting too much. I'm so optimistic that speech therapy will enable Mr N to verbalized his fear and enable us To better calm and help him.
Saturday, March 16, 2013
Moving forward
We finally did the IEP for Mr N last Thursday. The plan in place is 5 hours a day 5 days a week in a secluded room at the preschool with one on one time with Mr N and an aide, 30 minutes of speech therapy once a week and 30 minutes of OT once a week. This isn't exactly what we were looking for, we feel that Mr N would benefit more from being around his peers on a daily basis. But we anticipated them not being able to provide us with what Mr N truly needed and have been looking at areas to relocate, in order to get Mr N superior services and find a school that we feel comfortable sending our children.
Finally, we have determined the best location based on our needs, getting Mr N the services he needs, having a support system, decent schools for both E and Mr N, plenty of recreational activities we enjoy and closer to all of our family. We found out Thursday that Daddy was approved to work from home so that we could move. We are beyond ecstatic, so happy that Mr N will finally progress and grow into the amazing little man that we know he can be. We will be moving in three short weeks to wonderful Wyoming and we couldn't be happier.
I've already contacted the development center in Sheridan to expedite the process and get Mr N services upon our arrival, they've been very friendly and happy to help us get the process started. I've been amazed at how willing they have been to start the paperwork. It's been a completely different experience from working with the school district and regional center here. I'm optimistic that it will continue to be a positive experience.
Leaving behind our beautiful mountains, rivers, and waterfalls will indeed be a sacrifice. It's hard to imagine not living in the pines, mere miles from a national park, national forest and hiking trails. However, our little man's future is dependent upon him getting help now and his progress. As a parent, there is no sacrifice I'm not willing to make to ensure my child has a healthy, happy future.
Finally, we have determined the best location based on our needs, getting Mr N the services he needs, having a support system, decent schools for both E and Mr N, plenty of recreational activities we enjoy and closer to all of our family. We found out Thursday that Daddy was approved to work from home so that we could move. We are beyond ecstatic, so happy that Mr N will finally progress and grow into the amazing little man that we know he can be. We will be moving in three short weeks to wonderful Wyoming and we couldn't be happier.
I've already contacted the development center in Sheridan to expedite the process and get Mr N services upon our arrival, they've been very friendly and happy to help us get the process started. I've been amazed at how willing they have been to start the paperwork. It's been a completely different experience from working with the school district and regional center here. I'm optimistic that it will continue to be a positive experience.
Leaving behind our beautiful mountains, rivers, and waterfalls will indeed be a sacrifice. It's hard to imagine not living in the pines, mere miles from a national park, national forest and hiking trails. However, our little man's future is dependent upon him getting help now and his progress. As a parent, there is no sacrifice I'm not willing to make to ensure my child has a healthy, happy future.
Friday, March 1, 2013
Another day another poop
Mr N has done amazing with his potty training. He has an occasional accident, but not many. He hasn't had any nighttime accidents, and so far none in the car. I've been blown away by his progress, anytime we started to potty train before he would have several accidents a day and it would be a matter of hours before he was back in a diaper. I guess he knew he was ready when he took that diaper off a few weeks ago. He has come so far in the last few weeks, he now will go potty, wipe and flush without letting me know.
Enough about potty training, I'm guessing not everyone wants to read about peeing and pooping.
I've tried without success to get Mr N to say his ABCs, they are not as easy as counting to ten. We have tried watching LeapFrog Amazing Alphabet, Baby Einstein, we've tried saying them, doing the alphabet LeapFrog magnets on the fridge, but have gotten nowhere. Yesterday we were picking up toys, when we got to the blocks with the alphabet on them, I had Mr N put them away. I handed them to him one at a time starting with A. I got him to say several letters before he tired of it. But successful it was, I will attempt it again and again until we have success.
We still do not have a nailed down date for the IEP, the school called Wednesday to see if we could do it yesterday, but both kids are sick so we have a tentative date on the calendar for next week, but he is checking with the other invitees to see if it works for them. More waiting, more delay.
Enough about potty training, I'm guessing not everyone wants to read about peeing and pooping.
I've tried without success to get Mr N to say his ABCs, they are not as easy as counting to ten. We have tried watching LeapFrog Amazing Alphabet, Baby Einstein, we've tried saying them, doing the alphabet LeapFrog magnets on the fridge, but have gotten nowhere. Yesterday we were picking up toys, when we got to the blocks with the alphabet on them, I had Mr N put them away. I handed them to him one at a time starting with A. I got him to say several letters before he tired of it. But successful it was, I will attempt it again and again until we have success.
We still do not have a nailed down date for the IEP, the school called Wednesday to see if we could do it yesterday, but both kids are sick so we have a tentative date on the calendar for next week, but he is checking with the other invitees to see if it works for them. More waiting, more delay.
Friday, February 22, 2013
Patience
It's not my thing. I am not good at it, I do not like it. I want it and I want it now. Okay okay, I'm not that impatient but when waiting is producing negative results, then my patience grows thinner each day. As my wise mother texted me "have a drink and trust in God", so wise that one.
I get that suggesting patience is supposed to be encouraging and supportive but it is so hard to be patient when each day without services for Mr N is one day further delayed. How can I be patient when my baby is falling further and further behind one day at a time?
He qualified for speech therapy a year ago, but that never happened. Even if he only progressed by 6 months in the last year that would be 6 months further than he is now. But nope, instead he is 2 years delayed at this point. How much further do we let him fall behind before we do something drastic? I can't take this!
I got a call from the school today that they can squeeze an IEP in on the 27th at 1:30 for Mr N. Of course, we aren't able to make that time/date work and they didn't call back before the end of he day. So next week I'm sure they will try to reschedule for the following week. There is three months of school left, once again I get the feeling they are trying to procrastinate long enough that they don't have to do anything for this year. Saves the school money not having an extra kiddo to provide services for this year. I mean the regional center successfully avoided providing speech therapy for an entire year so they could push it off on the school. I'm starting to understand why so many parents have to literally sue the school district to get services for their child.
What the hello kitty is wrong with these programs that they don't realize that the more money and services they provide at a younger age the less programs they will need to fund later? Isn't that the point of early intervention? It is the key to success. If you have a 2 year old that is 6 months delayed, then getting the right services and he/she will be on track by the time they are 4 or 5. But they seem to think it is better to deny services and only provide the minimum so that by the time they are 4 or 5 they are so severely delayed that they will require additional services all the way through grade school and into junior high. And really if they aren't on track by junior high, there can't be much hope that they will be on track for high school and will continue to need additional help. There is little surprise that there are so many programs for adult services when the early intervention programs are so severely lacking. Do they not see the correlation?
In case you haven't figured it out, I've lost my patience, I'm pissed off and ready to rumble. Douchebag McGee should be glad he didn't return my call today, because I probably would have unloaded on him.
I get that suggesting patience is supposed to be encouraging and supportive but it is so hard to be patient when each day without services for Mr N is one day further delayed. How can I be patient when my baby is falling further and further behind one day at a time?
He qualified for speech therapy a year ago, but that never happened. Even if he only progressed by 6 months in the last year that would be 6 months further than he is now. But nope, instead he is 2 years delayed at this point. How much further do we let him fall behind before we do something drastic? I can't take this!
I got a call from the school today that they can squeeze an IEP in on the 27th at 1:30 for Mr N. Of course, we aren't able to make that time/date work and they didn't call back before the end of he day. So next week I'm sure they will try to reschedule for the following week. There is three months of school left, once again I get the feeling they are trying to procrastinate long enough that they don't have to do anything for this year. Saves the school money not having an extra kiddo to provide services for this year. I mean the regional center successfully avoided providing speech therapy for an entire year so they could push it off on the school. I'm starting to understand why so many parents have to literally sue the school district to get services for their child.
What the hello kitty is wrong with these programs that they don't realize that the more money and services they provide at a younger age the less programs they will need to fund later? Isn't that the point of early intervention? It is the key to success. If you have a 2 year old that is 6 months delayed, then getting the right services and he/she will be on track by the time they are 4 or 5. But they seem to think it is better to deny services and only provide the minimum so that by the time they are 4 or 5 they are so severely delayed that they will require additional services all the way through grade school and into junior high. And really if they aren't on track by junior high, there can't be much hope that they will be on track for high school and will continue to need additional help. There is little surprise that there are so many programs for adult services when the early intervention programs are so severely lacking. Do they not see the correlation?
In case you haven't figured it out, I've lost my patience, I'm pissed off and ready to rumble. Douchebag McGee should be glad he didn't return my call today, because I probably would have unloaded on him.
Saturday, February 9, 2013
IEP Cancelled
Yesterday we had an IEP scheduled for 10:30am, which was cancelled promptly at 10:17am. They like to give plenty of advance warning when there is a cancellation so you don't completely rearrange your schedule to accommodate the request. [That is what we call sarcasm.]
During the cancellation phone call, the school psychologist said that he would like Mr N to start receiving in home services until the program at the local school is set up. The agency should be calling me to set up the services with a start date of February 19. Based on previous experience with the company, I will expect our first phone call on the 19th and services scheduled to begin in March. I'm not trying to be a Debbie Downer, but reality is easier to accept than blind optimism with nothing to base it on.
If you ever have checked out autismspeaks.org and looked through the list of best/worst places to live if you have a child with Autism, you'll see California high on the list of worst places. This does not come as a surprise to me. Undertrained people providing partial services with large gaps of service does not bode well for their reputation. I happily expressed my dissatisfaction on the lengthy survey they requested we complete.
Potty training is still underway. I'm pretty sure that I'll be receiving a gold star later today signifying my great accomplishments. Four days of diaper free living, and I haven't given up. That is gold star worthy by all accounts. But seriously, he's doing great, aside from a few accidents. He requests to use the potty and has even worn his undies.
Since I'm sure my post won't show the exact time I posted, I'll go ahead and tell you, it is 5:37am right now. The sun is not up at all, it's quite dark actually. I guess my body has given up on sleeping, even though the contract states that the sleeping schedule can not be changed, altered or in any way adjusted without my written, notarized consent. I did not consent to waking up at 3:00am.
Please note, my lack of sleep explanation was to excuse away the mindless ramblings above and below. Oh did you think I was going to stop typing now?
Thursday we went to Sonora for our weekly grocery shopping (we gave up on the monthly shopping in Modesto as it was so exhausting no one likes Modesto). On our way we met up with Katee to return the toys and such that were left at our house when therapy ended the beginning of December. Mr N was happy to see her and insisted on getting out of the car to say hello. Our shopping trip was quite uneventful, we returned home and had lunch then the kids started playing. That ended abruptly when E mashed her face into the wall resulting in a busted lip and lacerated gums above her two top right teeth. We quickly loaded back up and headed back to Sonora to the dentist for an emergency exam. Her gums looked pretty rough and I couldn't tell how bad her teeth were injured. E did great, she had a couple of x-rays done, then an exam by the dentist. She was brave and not scared at all, I was quite relieved. Daddy met us there to assist since doctor's offices are typically meltdown city. But Mr N fell asleep on our way there and slept the entire time.
While at the dentist office we scheduled regular checkups for the kids for a couple of weeks later. It's a super kid friendly dentist office, so I'm hoping that Mr N can relax and get examined.
During the cancellation phone call, the school psychologist said that he would like Mr N to start receiving in home services until the program at the local school is set up. The agency should be calling me to set up the services with a start date of February 19. Based on previous experience with the company, I will expect our first phone call on the 19th and services scheduled to begin in March. I'm not trying to be a Debbie Downer, but reality is easier to accept than blind optimism with nothing to base it on.
If you ever have checked out autismspeaks.org and looked through the list of best/worst places to live if you have a child with Autism, you'll see California high on the list of worst places. This does not come as a surprise to me. Undertrained people providing partial services with large gaps of service does not bode well for their reputation. I happily expressed my dissatisfaction on the lengthy survey they requested we complete.
Potty training is still underway. I'm pretty sure that I'll be receiving a gold star later today signifying my great accomplishments. Four days of diaper free living, and I haven't given up. That is gold star worthy by all accounts. But seriously, he's doing great, aside from a few accidents. He requests to use the potty and has even worn his undies.
Since I'm sure my post won't show the exact time I posted, I'll go ahead and tell you, it is 5:37am right now. The sun is not up at all, it's quite dark actually. I guess my body has given up on sleeping, even though the contract states that the sleeping schedule can not be changed, altered or in any way adjusted without my written, notarized consent. I did not consent to waking up at 3:00am.
Please note, my lack of sleep explanation was to excuse away the mindless ramblings above and below. Oh did you think I was going to stop typing now?
Thursday we went to Sonora for our weekly grocery shopping (we gave up on the monthly shopping in Modesto as it was so exhausting no one likes Modesto). On our way we met up with Katee to return the toys and such that were left at our house when therapy ended the beginning of December. Mr N was happy to see her and insisted on getting out of the car to say hello. Our shopping trip was quite uneventful, we returned home and had lunch then the kids started playing. That ended abruptly when E mashed her face into the wall resulting in a busted lip and lacerated gums above her two top right teeth. We quickly loaded back up and headed back to Sonora to the dentist for an emergency exam. Her gums looked pretty rough and I couldn't tell how bad her teeth were injured. E did great, she had a couple of x-rays done, then an exam by the dentist. She was brave and not scared at all, I was quite relieved. Daddy met us there to assist since doctor's offices are typically meltdown city. But Mr N fell asleep on our way there and slept the entire time.
While at the dentist office we scheduled regular checkups for the kids for a couple of weeks later. It's a super kid friendly dentist office, so I'm hoping that Mr N can relax and get examined.
Wednesday, February 6, 2013
Potty Training
I hate it. It's messy and frustrating and I'd like to avoid it for as long as possible. Mr N apparently has other plans. Yesterday morning he took off his diaper and refused to put it back on. So every hour or so I put him on the potty, until I got busy and distracted. He did have one accident, but he also told me "potty" one time when he needed to go, and another time he pointed to his butt when he needed to poop. Not too bad for day one.
He stayed dry through the night and slept without a diaper. He did have 2 accidents today when we were outside and there was a lot of distractions, we had the carpet cleaned today and some trash hauled off, so I wasn't paying enough attention to the time. Twice today he has indicated that he needed to go potty once by saying "pee", the other times I asked him and sat him on the potty.
So far I would say he is doing quite well with this whole potty training thing. The only problem so far is that he refuses to wear underwear, I think the elastic is bothersome so I'm going to be hunting for some less irritating boxer briefs or something more comfortable. Until then, he can go commando, all the cool kids are doing it.
Meeting went off without a hitch, he went sans diaper and there were no accidents.
He stayed dry through the night and slept without a diaper. He did have 2 accidents today when we were outside and there was a lot of distractions, we had the carpet cleaned today and some trash hauled off, so I wasn't paying enough attention to the time. Twice today he has indicated that he needed to go potty once by saying "pee", the other times I asked him and sat him on the potty.
So far I would say he is doing quite well with this whole potty training thing. The only problem so far is that he refuses to wear underwear, I think the elastic is bothersome so I'm going to be hunting for some less irritating boxer briefs or something more comfortable. Until then, he can go commando, all the cool kids are doing it.
Meeting went off without a hitch, he went sans diaper and there were no accidents.
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