Sunday, December 16, 2012

Friday, November 23, 2012

Happy Birthday Joshua!

Click to play this Smilebox collage
Create your own collage - Powered by Smilebox
Free digital collage created with Smilebox

Happy 4th Birthday Joshua! I look back on these 4 years with amazement, you have come so far and taught me so much! I am reminded of what's really important in life because of you. People, love, life, experiences. You have made my world a brighter place!

Tuesday, November 20, 2012


This is the time of year we are supposed to remember what we are thankful for. I sometimes have trouble with this as I am thankful for things but it reminds me of all the challenges Joshua has. So I think rather than make this about all the things I have to be thankful for I will just write an update about Joshua. His progress is something I am thankful for.

Unfortunately, the foundation that provided funding for Joshua's 6 months of music therapy has decided he will not be receiving any more. They did agree to let him continue for another month so he could finish out the year. That gives me more time to try to find funding elsewhere. I have already applied to two other foundations and I am waiting to hear back from them. Also a possibility is that with a job Jamie is doing he may receive a small payout, personally, and if it's anything substantial it can go to pay for music therapy.

The biggest strides, I am happy to say, have been verbal and cognitive. Of course he is still working on gross motor and fine motor but since he started walking the gross motor goals have lessened. He works on balance a lot at PT and he does really well with fine motor. He is on a waiting list for OT near where we live since for the longest time he has gotten OT out of town at a great place but we are looking to move it closer to home because he will be getting ABA therapy soon! We just found out that his number came up on the PDD Waiver which means for the next 3 years he will get ABA therapy. We had to say goodbye to his early interventionist who had been with us for almost 3 years because he has to move to service coordination because of the PDD Waiver (ABA therapy). We meet with our service coordinator next week to start the paperwork and process of him receiving ABA therapy.

On to the progress as I said he has been doing well verbally. He is actually saying some words now! I am constantly hearing from preschool about words he says, he doesn't do as much of it at home but he is doing a lot at school and hopefully that will transition to his new school next year. He is counting at preschool, one note said he counted to 15 with help from a teacher! I have not been able to get him to do this yet but they said to try with him on the potty, that's usually the best time for him to count for some reason. The one thing he is doing consistently everywhere is saying go. It started with us saying ready set and he says go and now he will imitate go from the tv, from music and from us!  He is also doing really well with music therapy which is why I hope he can continue. He is doing a lot of verbalizations there, a lot of copying and filling in the right sounds in songs.  It has been really great for him! I love it when something like this works. I just knew from that workshop on music therapy that it would be great for him and it has been.

Sunday, September 2, 2012

A link to a wonderful video and update

Wow, it has been a really long time since I've done any kind of posting here. Just been busy with life. I don't know if I ever mentioned it but I have gone back to school, online! I'm taking online classes so add that to everything else already going on and I'm a bit busy but it's good and important so I'm dealing with it. I'm determined! Joshua is doing well. He has been going to music therapy since May and will get to do so through October at least. The foundation gave him 6 months and then will decide if he gets more. We decided to add another preschool day for Joshua this year. So he is going to preschool 3 days a week, he's also getting PT, OT, SLP (speech) and music therapy so to say we are busy is an understatement. Oh and he's doing horseback riding as well, not every week but a few times a month. So far so good with the new schedule, we've done 2 weeks of it and he's doing well. We had to say goodbye to his SLP 2 weeks ago because of schedule change and because she doesn't see kids past 4 and somehow Joshua will be 4 in November, not even talking about that yet. I think it's really that she doesn't see kids past age 3 but just kept seeing Joshua. So when we decided to put him in preschool 3 days a week we had to make some schedule changes and knew that we would be switching anyway so decided to go ahead and do it. His new SLP seems nice but she'll never take the place of the old one. Oh and last month Joshua got to meet his Uncle Tony (my brother) for the first time! It was such a wonderful visit and I'm so glad it finally happened. We went on vacation to the beach in June and had way more rain than sun but we go away to the mountains in 4 weeks so hopefully this vacation will make up for it! (fingers crossed, knock on wood!)

Okay now for that video. I just came across it today and I can't really describe it just that if you are in the special needs world or know someone who is or work with families that are then you should watch it. I think really whether or not you've gotten a diagnosis it's relevant. It's about what you would say to yourself on the day of your child's diagnosis or I guess what you say to yourself back when you first found out something was different about your child. The Extreme Parenting Video Project by Elizabeth (no, not me)

Friday, May 4, 2012

Music Therapy Update!

Last month I posted about the Family Connection Conference and a music therapy workshop I attended. I was determined to try to get funding so Joshua could get Music Therapy. A friend told me about The Lindsay Foundation, she has a child with special needs and has received funding from them for her son's specialty therapies and equipment. I decided I had nothing to lose and everything to gain so I contacted them, filled out a form and waited. They said they had a meeting mid-April during which they would review requests and make approvals. I got a call 2 weeks ago from The Lindsay Foundation that they had approved my request for Joshua's music therapy! I couldn't believe it! They said they had never approved a request for music therapy before but they had received some. I don't know why they chose to approve Joshua's request but they did. He is getting 6 months of music therapy starting this month and they want a progress report in 90 days.

I immediately contacted Natalie at Key Changes Music Therapy, the one whose presentation I went to in March, told her that Joshua was approved and scheduled our first session which was today! The first two sessions are assessments and one of those was today. She does one session with the parents and one without, since Jamie went with us today and he had never met her before we did this session with us in the room. It went great! When we got there Joshua was a little hesitant at first but once he saw the room with all the musical instruments in it he went straight in there. They played with drums, bells and maracas but Joshua discovered his favorite instrument pretty quickly and it was no surprise, the guitar. As soon as she started to sing and play he was happy. After a few songs he started dancing, bouncing and smiling. He only came over to me once, he would have been just as happy without us there. I was thrilled but I had a pretty good felling it would go well. Every time she put down the guitar to try to get him to play with something else he went right back over to it. She wanted him to strum it, he would grab her hand and try to make her strum it. It was so nice to get that confirmation that I was hoping would happen. It just fell into place like it was supposed to, it felt like it was meant to be. Since this is a rare thing in my life or at least feels like it is when it happens I have to try to be as grateful as possible.

Thursday, April 5, 2012

Music Therapy

Two weeks ago I attended the Family Connection Conference. All of the workshops were great. I went to ones about assistance dogs, stress management, ABA therapy techniques, The Anat Baniel Method and sensory activities. They were all very good and informative but the one that stuck with me and I have not been able to forget was about music therapy. Prior to this I knew nothing nothing about it, not what it was or anything. I quickly learned in that 1 hour 15 minute presentation what it was and I wondered how did I not know about this, how come no one told me about it and how do I get Joshua into it. Not just it but I was enthralled by the therapist, she runs her own practice. So not only do I want Joshua doing music therapy but I want her doing his therapy. Unfortunately it is not something that insurance covers. Joshua gets physical, occupational and speech therapy all covered by insurance. Music therapy is new compared to these types of therapies, hopefully it will soon be covered by insurance. Until then it is an out of pocket expense. I have already contacted one foundation about getting funding and Joshua's Early Interventionist told me about summer support funds that the Department of Disabilities and Special Needs gives out for children with special needs to go to summer camp. We will be applying for these funds to get Joshua started with music therapy (I do not know how much we will be able to apply for or receive). I have also started a FundRazr to raise money for this. I am planning to ask family and friends to donate instead of buying gifts for Joshua's birthday or Christmas/Hanukkah. I don't know if that will work but I'm going to give it a try.

Music has always been something wonderful in Joshua's life. From the time he was a newborn when he was upset especially in the car I could put on a certain song from a certain CD and he would stop crying. Once when he was getting an x-ray and had to be still I sang to him, that was all it took. Now I can sing to him and get an immediate smile. Music has also been how we have gotten the first imitations out of Joshua most recently he quacked at preschool to a song, he can (when he wants to, like everything else) go EIEIO in Old MacDonald, I taught him how to do Ring Around The Rosie and he was doing DA for down at the end of the song and it all comes back to music. It was immediate for me upon learning about music therapy, I want to do this for Joshua. The possibilities are endless. Now we just have to figure out how to make it happen. Here is the link to the FundRazr

Friday, January 20, 2012

iPad and other news

I wrote this post a few days ago and then forgot all about it. Oh well, here it is.

Joshua is playing more with the iPad with some apps that I picked out for him. We took some videos of him playing last night with 2 apps; Baby Games - My First Shapes and Match It Up. They are all 4 of the Joshua on the iPad videos. You can see him actually learning with the Match It Up game, he gets the shapes right sometimes and this is just from playing it. Yes, I have to help him but he is learning to match the pictures and how to drag the matching picture to the one in the middle. He is also learning with the shapes game, he doesn't always get it right but he knows that if he gets it wrong to choose the other picture. We also keep playing, these and other games, repetition helps him learn.

Joshua is learning to clap and to imitate clapping and other things. Some shows he watches the characters will clap, mostly in certain Wiggles songs and on Play With Me Sesame. I have just recorded one episode of Sesame where the characters ask you to clap with them. Joshua has done this independently before. Of course when I got out the video camera to record him doing it he wouldn't do it. He is also imitating motions during circle time at school. Most of the songs they do during circle time involve motions, including sign language. Joshua is starting to imitate the hand motions in the songs.