We have quiet a bit to do to prepare for the new baby, mainly getting the house together before both our families come out for extended stays. Step one. Take down the Christmas tree in the loft area. Yes, I said Christmas tree. Yes, I know it is the end of March and I still have one of our trees to take down and pack up. Along with gathering the remaining holiday decorations and putting them away. For the record, I put up four Christmas trees this year and just have not had the energy or the moment to take down this last tree. But it will happen in the next couple days. Fingers crossed.
I was blessed this past weekend by dear friends of mine, my Phoenix family, who threw me a beautiful baby shower. A garden party, complete with fabulous sun hats. I left Saturday feeling very loved and cared for. Reminded me I do have a support system here in Phoenix, though it may be small, they are here and love me dearly. I was blessed by the handful of friends who came to shower me with love and spoil Skywalker. My mom, who sadly was not able to make it, surprised me by coordinating with the hosts to get me a cake. Well cakes, strawberry short cakes specifically. The bakery did an amazing job making them and they were absolutely divine. It was wonderful to know my mom was there in spirit, since she could not make the cross country trip to be there physically. Definitely a shower to remember and I am so thankful for the ladies who hosted and for the friends who came. It was nice to focus on something fun and completely for me for a few days leading up to the shower and the day of the shower, as I have been so overwhelmed with everything else going on in our lives.
In the last several weeks we have had ton going on for Marshmallow. I applied for the Empowerment Scholarship (ESA) for the 2015/2016 school year and he was approved for it. What this means is that we are to remove Marshmallow from public/charter school system and in turn we receive about 80-90% of the funding the state would have given the school for our son attending. Marshmallow qualified for this under the special needs category through the preschool severe delay diagnosis. We can use this money to pay for preschool curriculum, various therapies, tutors/aides or tuition at a special needs preschool (if one actually existed in our area). But the truth is I am not really sure what we will do with the money. Right now I am just trying to explore what options may be available to use the funds towards. We will add more speech therapy for Marshmallow and want to look into music, aquatic, art and possibly equestrian therapies for him. We are looking at trying to find a private preschool to take Marshmallow, but the difficulty is finding one that will take him if he is not 100% potty trained by the start of the school year. Most say they can handle his developmental delays, but obviously would not be equipped to give him any special treatment. So trying to see what makes most sense for our budget and where may be the best place for Marshmallow to attend. I would like to keep him in preschool for at least 2 days a week. As the routine and socialization side of preschool are currently the more important aspects to his preschool experience. So been spending a lot of time trying to navigate what we can do with the ESA and how to proceed for next school year.
Which I brings up the question of why? Honestly, I just have not been impressed so far with the preschool Marshmallow is attending. While he seems to like it and is good for him. There have been so many red flags that make me feel that this is not the best place for him to be. His class is HUGE. There are 20 other students in his class. There is a teacher, who happens to be long term sub, and two aides. Making it a 7 to 1 ratio in the classroom. That is high for any preschool, yet alone a class of special needs students. Honestly, I am not even sure what credentials the substitute even has to be taking over his classroom. Both these things I plan to talk to the school district about. I also am not impressed with the communication from the school about Marshmallow's progress. I have yet to be told anything. Since he takes the bus both to and from school, I am not able to check in with his teacher and I have not been given and progress reports on how he is doing. I do pick him up on Tuesdays, but it is early and usually interrupting the class so not a time to be able to check in and chat. I also have yet to get any updates from the speech therapist on his progress during his speech sessions. All in all, I am not really sure how to go about getting better communication from the school. I do not want to be the pesky parent, but unhappy with the lack of communication of updates on how Marshmallow is doing. Obviously the other red flags were things I wrote about in previous posts, such as the initial testing for him to get into the program and the lack of organization.
As much as I am not sure that this school is a good fit for Marshmallow, I do know that it has been a good transition for Marshmallow. He is certainly picking up social skills he did not have or understand before. He seems to be doing well with focusing on one activity at a time as well, as long as we set it up in such a manner to make that happen. So all in all, I just feel that while he may be doing well here, I do think a different school may fit him better. That he may gain more from being in a smaller class, with neuro-typical children to model for him. Hopefully we can find him a good fit somewhere.
Along with this I am trying to find something for him during the summer months. But sadly options are limited. Again most expect a 3 year old to be completely potty trained and he is not. We have found one option that may work out, but I am still looking around to see what other options may be there for to use. I am running out of time though in trying to figure this out as we have about 8 weeks before the end of the school year here in Arizona. Fingers crossed I can find something that is a good fit. I would also like to look into possibly swim lessons for him and sign him up for t-ball again. Both make me a little nervous remember how t-ball went last summer with him. As for swim lessons I am hoping we can find someone who has worked with a child with sensory issues. I have in the past, but really do not think I am the best person to teach my child. Hoping I can find someone, as swim skills and pool safety are so important here in Arizona. As every other person has a pool in their yard. I want to make sure Marshmallow is safe. So plenty to figure out in the coming weeks for Marshmallow.
The ABA process has been continuing to move along. Seems like at snails pace, but it is moving along. I met with a potential therapist a little over a week ago. She seemed nice and Marshmallow did not seem to have an issue with her. We are meeting again on Sunday with her and the lady that did the initial evaluations to see how the pairing is between the therapist and Marshmallow. Also to hopefully start setting up getting his therapy moving along. So basically we are in the final stages, if this turns out to be a good match. Fingers crossed we will be able to get the sessions started by beginning of April.
However, I got some frustrating news a couple days ago. The benefits for the ABA we were originally quoted was incorrect. And it is not covered at 100% like originally thought. We will have a co-pay for each session we do. While it is still a great benefit, his therapy is going to be costly for us each month. We will be looking at about $500 per month, if he does ABA 5 days a week. I had a moment of panic yesterday after learning this. Thankfully, we have some money set aside specifically for Marshmallow and whatever needs may arise for him. So at least for now we will not have to worry to much about where the money for this is coming from for all this for the short term. But we have to figure out alternative options for the long term. With living on one income, we just do not have a lot of wiggle room for a ton of added expenses. And the last thing we want is more debt, since we are working very hard to get out of debt.
As much as I am not sure that this school is a good fit for Marshmallow, I do know that it has been a good transition for Marshmallow. He is certainly picking up social skills he did not have or understand before. He seems to be doing well with focusing on one activity at a time as well, as long as we set it up in such a manner to make that happen. So all in all, I just feel that while he may be doing well here, I do think a different school may fit him better. That he may gain more from being in a smaller class, with neuro-typical children to model for him. Hopefully we can find him a good fit somewhere.
Along with this I am trying to find something for him during the summer months. But sadly options are limited. Again most expect a 3 year old to be completely potty trained and he is not. We have found one option that may work out, but I am still looking around to see what other options may be there for to use. I am running out of time though in trying to figure this out as we have about 8 weeks before the end of the school year here in Arizona. Fingers crossed I can find something that is a good fit. I would also like to look into possibly swim lessons for him and sign him up for t-ball again. Both make me a little nervous remember how t-ball went last summer with him. As for swim lessons I am hoping we can find someone who has worked with a child with sensory issues. I have in the past, but really do not think I am the best person to teach my child. Hoping I can find someone, as swim skills and pool safety are so important here in Arizona. As every other person has a pool in their yard. I want to make sure Marshmallow is safe. So plenty to figure out in the coming weeks for Marshmallow.
The ABA process has been continuing to move along. Seems like at snails pace, but it is moving along. I met with a potential therapist a little over a week ago. She seemed nice and Marshmallow did not seem to have an issue with her. We are meeting again on Sunday with her and the lady that did the initial evaluations to see how the pairing is between the therapist and Marshmallow. Also to hopefully start setting up getting his therapy moving along. So basically we are in the final stages, if this turns out to be a good match. Fingers crossed we will be able to get the sessions started by beginning of April.
However, I got some frustrating news a couple days ago. The benefits for the ABA we were originally quoted was incorrect. And it is not covered at 100% like originally thought. We will have a co-pay for each session we do. While it is still a great benefit, his therapy is going to be costly for us each month. We will be looking at about $500 per month, if he does ABA 5 days a week. I had a moment of panic yesterday after learning this. Thankfully, we have some money set aside specifically for Marshmallow and whatever needs may arise for him. So at least for now we will not have to worry to much about where the money for this is coming from for all this for the short term. But we have to figure out alternative options for the long term. With living on one income, we just do not have a lot of wiggle room for a ton of added expenses. And the last thing we want is more debt, since we are working very hard to get out of debt.
So, I spent most of the last couple days trying to figure out what that option may be. I had been told a few times to look at applying for DDD services, but had no clue what it is and why it is needed. Well this is exactly why. DDD is Department of Developmental Disabilities. So I sought out some help from those who have traveled this road before me and asked what I need to do. I am so grateful for their help and guidance, I know I would be completely lost without it. They told me to apply for DDD, but also to apply for ALTCS for Marshmallow. That without ALTCS, DDD is basically useless. ALTCS is Arizona Long Term Care System. Basically the way you get funding for DDD services. Once we get all this in place and hopefully accepted, then the state should help cover medical services that Marshmallow may require, such as the ABA therapy. I got the ALTCS process started yesterday and started with DDD a couple days ago. So this is just a couple more things to add to my list of what I am trying to muddle through.
This past week, I also got the PECS (picture exchange communication system) binder I ordered for Marshmallow put together. I finally just decided to order a starter kit to get it done, instead of wasting more time trying to start one myself. This is basically a binder with pictures for us to use as a form of communication with Marshmallow. Over time we will add more to it, but for now I have a good start with the package I ordered. This will help to be able to set Marshmallow up with a visual schedule, as well. The idea is that we will take it everywhere with him, so he is able to communicate better with us, and us with him. It will take some time to adjust to using it in our daily routine. Marshmallow actually helped me put it together, which I believe helped him to understand it a little better. He has reached for it several times in the last few days to show me his wants and needs. So just need to keep reinforcing just that. Definitely excited about the PECS and excited to see how it helps Marshmallow.
I am glad to have finally get that together for him to use, especially because I feel that Marshmallow's speech is slightly regressing. I feel he is loosing some of the articulation he did have, which has lead to much frustration for Marshmallow and us. Since being able to understand his words has become more difficult again. So I am grateful to have a tool to use to help bridge our communication with each other. Hopefully, will prevent some meltdowns from happening.
Overall, I feel like the last several months have just been a blur. Lots of time spent trying to figure out what is next. I feel like I have jumped into the deep end of a pool and barely able to stay afloat. Each day is full of just trying to get to the end of this tunnel. I am still trying to soak in what the ASD diagnosis really means for our son and for our whole family, but yet I am attacking everything with full force. I know if I stop to breathe, all processes will slow down. Right now, time is important and getting everything going is so important.
I know that once Skywalker arrives, my time will be split. So I am trying very hard to get as much lined up and set up before hand as I possibly can. 5 weeks to try and figure out as much of this all as possible. It certainly feels like I am running a marathon most days, in trying to process and get all this figured out. I have been grateful for those that have come along side me in this journey to help guide me through most of it. For now, I will just keep pushing forward and hope all eventually falls in place. Just trying to keep my head above the water for now.
This past week, I also got the PECS (picture exchange communication system) binder I ordered for Marshmallow put together. I finally just decided to order a starter kit to get it done, instead of wasting more time trying to start one myself. This is basically a binder with pictures for us to use as a form of communication with Marshmallow. Over time we will add more to it, but for now I have a good start with the package I ordered. This will help to be able to set Marshmallow up with a visual schedule, as well. The idea is that we will take it everywhere with him, so he is able to communicate better with us, and us with him. It will take some time to adjust to using it in our daily routine. Marshmallow actually helped me put it together, which I believe helped him to understand it a little better. He has reached for it several times in the last few days to show me his wants and needs. So just need to keep reinforcing just that. Definitely excited about the PECS and excited to see how it helps Marshmallow.
I am glad to have finally get that together for him to use, especially because I feel that Marshmallow's speech is slightly regressing. I feel he is loosing some of the articulation he did have, which has lead to much frustration for Marshmallow and us. Since being able to understand his words has become more difficult again. So I am grateful to have a tool to use to help bridge our communication with each other. Hopefully, will prevent some meltdowns from happening.
Overall, I feel like the last several months have just been a blur. Lots of time spent trying to figure out what is next. I feel like I have jumped into the deep end of a pool and barely able to stay afloat. Each day is full of just trying to get to the end of this tunnel. I am still trying to soak in what the ASD diagnosis really means for our son and for our whole family, but yet I am attacking everything with full force. I know if I stop to breathe, all processes will slow down. Right now, time is important and getting everything going is so important.
I know that once Skywalker arrives, my time will be split. So I am trying very hard to get as much lined up and set up before hand as I possibly can. 5 weeks to try and figure out as much of this all as possible. It certainly feels like I am running a marathon most days, in trying to process and get all this figured out. I have been grateful for those that have come along side me in this journey to help guide me through most of it. For now, I will just keep pushing forward and hope all eventually falls in place. Just trying to keep my head above the water for now.
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