Tuesday, December 22, 2015

Andy is teething

Andy had a few days last week at school where he wouldn't stop crying for over an hour. They called to have me come pick him up early. His second molars are coming in because he is over six years old. I give him Tylenol and put Orajel on his gums to numb them. This helps him to stop crying and feel better. The dentist confirmed that the teeth are breaking through the gums, and other teeth are about to erupt as seen on the X-rays. This will be a little rough patch for now. Sometimes he doesn't want to eat, so we wait until the Tylenol helps him to feel better.

Saturday, December 5, 2015

Working on holding markers and crayons

Andy's sister is suddenly loving being his teacher at home. She didn't want a whole lot to do with him before, but now she is finding it fun to show him how to hold markers and crayons. She is also trying to get him to point to colors in books. She told me she is going to make him a report card too. I'm glad she's finding this all fun, and he gets to interact with her more now.

Friday, December 4, 2015

Kylie Jenner posing in a wheelchair is sickening to me

Kylie Jenner, you don't get to choose to put yourself in a wheelchair. God didn't make that your fate.  These pictures are a tasteless disgrace. My son is in a wheelchair because his fate was to have missing genes from his DNA, making him severely impaired. Your fate was to be born into a rich and priveleged family, as an able-bodied person, unsure and clueless as to what to do with their privelege. Why can't you use your privelege and platform to make this world a better place? How about you spend a week in a wheelchair and see how difficult it is to get around town, go to appointments, and eat lunch with friends in restaurants. 

How about don't be offensive, and instead find a cause to help out with? I educate others on the hurdles of raising special needs kids, and provide information so others in my same shoes won't feel so alone. My husband is helping to design electric cars for other parts of the world where pollution is a huge problem. Please do something with your life that will help and uplift others, not just shock-value tactics to get more "unwanted attention".

If you don't like the fame and can't handle it, then get off of tv. Stop filming reality shows. Get out of the spotlight. People will forget about you.  I'm so sick of the famous crybabies of the world, "Oh poor me, I'm crippled by my fame and privelege". Get over yourself. 

Why don't you reinvent yourself to actually do some real good in this world and not just sit around taking pictures of yourself all day? Instead of being so offensive, how about being positive and impactful? 

These pictures make me so sick and angry, because no disabled person that is in a wheelchair chose that for themselves. You willingly choose to be on tv, do endless photoshoots so you'll be seen even more, and then you are going to complain about it. You are choosing your own crippling condition and you have the power to change it. No one chooses to be limited in what they can do and where they can go because of their wheelchair. Please stop comparing your fame to a person that has no choice but to be in a wheelchair, because it is highly offensive and outrageous. 

Friday, November 27, 2015

New glasses

Andy's new glasses are working out so far. He hasn't tried to bend them, and hasn't knocked a lens out. I think he looks cute in them. He is playing with a bead toy here on Thanksgiving. I don't notice his eyes crossing inward when he has them on either, which is great. He gets frustrated if his eyes cross repeatedly, and he will shake his head to try to get his eyes to go back. The glasses seem to help though. They are mostly for his astigmatism though, so things won't look distorted to him.

Friday, November 20, 2015

Circles of communication / PLAY project

We have a child psychologist that comes over once a month to observe Andy and give me suggestions on how to interact with him. He has told me about circles of communication. This is when Andy is doing something and I get his attention and then he interacts with me. He will then react to me, often by doing the same action again. Usually, one of our circles of communication is when Andy starts making noises by tapping his hand or fist on his mouth and then he looks at me. I then make the noises by tapping  my hand over my mouth and then when I stop he repeats this again. It's like I'm imitating him and then he repeats the action. He really enjoys this and we now will carry on this behavior for 10 to 15 minutes. At first, the circles of communication would only happen once or twice. Over time, Andy is seeking out more interaction with me, and is wanting to do it more often. We are interacting with each other every day for longer periods of time each day. This will ultimately help Andy to start learning. 

He first has to be comfortable interacting with me and regulating himself, so that he feels OK with his body and in his space. Once our interactions can be stretched out into longer periods of time, we might be more successful in helping him to start learning things. His needs have to be met first on much lower developmental levels before he can begin to learn academic things. These small steps are slowly building into larger interactions, and progress can be seen with him wanting to interact with us more often.

Wednesday, November 18, 2015

Our respite care worker quit

On Tuesday, I was patiently waiting for the respite care worker to arrive. She comes three times a week to watch Andy for four hours.  Once she was 30 minutes late, I texted her asking, "Are you coming today?" Then she replied, "Sorry, they didn't tell you? I quit on Friday." Nooooooo!  She says it wasn't about our family, she loved caring for Andy, it was about too many demands from the agency and not enough money. 

I am very thankful for the three months that we had her services. We really enjoyed all the time we got to spend with our daughter. I really enjoyed all the times I got to go to dinner with her, just the two of us, or sometimes my husband would join us too. I loved the sewing classes I got to attend with her, and the rollerskating nights, and the movie nights. It was good while it lasted. But just as I had feared, all good things must come to an end. Until we get a new worker...sigh.

Saturday, November 14, 2015

Had to return the Miraflex glasses

We had to return the Miraflex glasses because the lens kept popping out of the frames. Andy would fidget with the glasses and push the lens right out of the frame, and I am worried that he will choke on the lens if not being watched every minute. We are going to try some flexible wireframes. These might be better because the lens is held into the frame tightly with a screw.

We got outside today to enjoy some warmer weather. Andy's sister took him for a ride in the Barbie Jeep. He really enjoys it. 

Tuesday, November 10, 2015

Son's speech therapist refuses to recommend music therapy for Andy

The county that we live in has agreed to pay for music therapy for my son, but first his school speech therapist must write a letter stating that it would be beneficial for Andy. I asked nicely, and she refused. It was a bit disappointing. This is how the email went:

Dear Speech therapist,

The county has told me that they would pay for music therapy for Andy, if you feel that he would benefit from music therapy. We would need a letter from you stating that he would benefit and that he has a deficit in one or more of the three areas of receptive, expressive or pragmatic language skills. Please let me know your thoughts. 

Thank you!

She prepared a letter that did NOT recommend speech therapy for Andy, however, it stated his deficits and that "Andy responds well to music". She clearly was not stating that Andy would benefit from music therapy in any way. I submitted the letter anyway. When it was rejected by the county, I sent this:

Hello Speech therapist,

The county would like to know if you feel music therapy would benefit Andy. They told me the letter was rejected because it doesn't state how music therapy would benefit Andy. Could you elaborate on this in your letter so we can try one more time? 



I got this:

I clarified this with the special ed director and was told that the school district is unable to directly recommend outside therapies, since it can make them liable to pay for them.  I have CC'd the special ed director on this email in case there is anything else I can do from my position.  I am so sorry- I tried to state in my letter that Andy loves music.  

The special ed director further said:

Good morning,

It is difficult for school staff to recommend outside therapy if they do not see a need for it within the school environment.  Staff can write a letter based on observations they see within the classroom and/or therapy time. It sounds like the speech therapist wrote the appropriate letter based on her observation within her therapy sessions.  If you have any other questions please let me know.

I really still do not know whether it is the therapists' professional opinion that music therapy would benefit Andy or not, because she refuses to answer!Basically so they won't be held liable for payment. Really??  How frustrating!

Here are some parts of the letter: 

Andy presents with a significant expressive, receptive and pragmatic language disorder. His current eligibility for services is SXI...Andy responds well to music...

None of which, helped him to get the music therapy being offered to him by the county. Again, the school continues to create roadblocks for my son. Sigh

Monday, November 9, 2015

Andy is unable to self feed

I don't think I've updated on the occupational/fine motor skills in a while. I usually just focus on Andy's standing and taking steps. Andy cannot feed himself and finds it very difficult to put food in his mouth. Although, he can put toys in his mouth. He seems to overshoot with a fork, or drops it before it meets his mouth. He also drinks only from a cup with a straw,  but I have to hold it for him. He will gesture towards the cup, but he will not grasp it to pick it up. If I show him hand over hand, sometimes, not always, he will hold he cup and drink it. Then he will drop it down to the floor. 
It would be amazing to see him reach out and grab the cup himself, and place it back down. I have to slowly show him that he must do this in his own, even when he's very frustrated. He does it with toys all the time I just don't think he had the confidence to do it with food. He is also fascinated with just smashing the food in his hands, so it doesn't make it to his mouth. He doesn't seem to understand a whole lot, so we will continue to work on having him drop objects into containers in hopes that he will soon drop food into his mouth. 

Wednesday, November 4, 2015

Andy is standing often with my help

I try to have Andy stand and take steps as much as I can. Even going to get a drink of water I had Andy walking in front of me. He likes it best for me to be behind him and not in front. He doesn't like me to hold his hands so I hold his elbows or upper arms. I am standing behind him here in this shot. 
If there is a chance for him to be on his feet and not playing on the floor, I have been very motivated to do it. I can tell he is benefitting from it and stands stronger each day. His appetite is also very high. He is quite hungry at home and at school. He is growing and getting heavier. It might also be because of all the activity he is doing now, instead of just lying on the floor too much. 

Saturday, October 31, 2015

Miraflex glasses

Andy is wearing his new glasses all the time now. His misshapen eyes (astigmatism) are causing him to see things as being stretched out. The doctor says the glasses will help him to see less blurry and not see images in a distorted way. We got glasses that will not break easily, because Andy likes to take glasses and bend them. Any object he can get his hands on, he tries to squeeze and twist it, not really meaning to break it. He probably doesn't understand what he is doing really.

These glasses are called Miraflex and  they are a flexible plastic type of material. He does not try to remove them. There is a strap that goes around the back of his head to keep them on. He seems to be able to put toys into containers better now, and is taking steps slightly better too.

They will also help him to see far away.

Monday, October 26, 2015

Frankenmuth was tough with a wheelchair

We went to Frankenmuth,MI on a Saturday, which was probably the busiest day of the week. The crowds were unbelievable. Frankenmuth is a little tourist town with an all year long Christmas store and little cheese shops, fudge shops, toy shops, and shops to find unique things. Many shops had only stairs to enter. I mostly went into the ones that were wheelchair accessible. The Kite Craft Frankenmuth Toy Company was very helpful to us. They held the door open as we came and went, and had many unique and appropriate toys for Andy. He loved these Sesame Street bean bag toys that I had never seen before. I kept picking them up and chewing on them, so I had to buy them. He enjoyed them so much. The tag says 2015 Sesame, so they must be a new item. I would like to get more.

I will be returning for some more Christmas shopping, but next time it will be during the week when it is less busy. I'd also like to go back with just my daughter to see the lights at night. I loved the fresh fudge and toffee it was such a nice treat. Andy was also excited to watch the people walking by.

Sunday, October 18, 2015

Trying to enjoy warm days before winter weather

Anytime it is warm we jump on the chance to do something outside. Andy loves riding in the Barbie Jeep with his sister. He also likes the bin full of corn at the apple orchard/cider mill. 

Some days the weather can be at 70 degrees F, and the next day can be a chilly 39 degrees F. Now that it is mid-October it will soon remain cold. Yesterday, we had big snowflakes coming down for ten minutes on October 17. 

We also got to Cedar Point Amusement park in Ohio too. Andy loves it there. I bring his noise canceling headphones for when we are near the loud roller coasters. He loves the camp snoopy area  for the peanuts 500 cars. The lines were super short because the Ohio kids were back in school when we went. We got a passport hat would allow us to get scheduled times to come back to the rides, but we didn't have to use it. You can get it at guest relations. 

It's nice to see Andy having so much fun despite his disabilities.

Thursday, October 8, 2015

We've been working hard!

Andy is used to playing on the floor a lot, and having things brought to him. Lately, I am trying to have Andy stand more during play time. Either I will 
hold him in a standing position or he will stand in stander and play.

When we use the stander with a seat in it, he eventually sits down after about five minutes. So I have to keep pulling him back up to standing. After about 30 minutes I take him out of this. 

I used to brush his teeth in his bed, then bring him his cup of water for a drink. Now I have Andy step to the bathroom while I'm holding him, and he stands at the sink. He is motivated to do this because he loves getting his hands wet. While he is putting his hands in the running water, I am brushing his teeth, and he's standing with me behind him. I have to do this in case he falls or his legs buckle unexpectedly. 

I am slowly making standing a bigger part of his day, and his school is too. Now that I am in the habit of brushing Andy's teeth while he's standing at the sink, it is a normal thing that we do. I feel he is benefiting every day by standing more often than he ever has before.

I'm noticing more babbling and also more drooling and chewing on toys and bibs. I've ordered some chewy sew-on corners for his current terry cloth pullover bibs. I am told that the chewing on objects is totally developmentally appropriate for the infancy stage that he is in, and it could last a long time. The psychologist told me to give into it and let him chew all that he needs to. It's giving him oral sensory input, and it makes him happy.  

Wednesday, September 23, 2015

School is going well

Andy has been back in school now for almost two weeks. Things are going really well. Andy is able to stay at school for several hours. The staff tells me that he doesn't get too cranky, and eats his food really well.

Andy is happy to be at school, and squeals and claps when he sees his friends there. Andy doesn't always need a nap after school. Sometimes, I can see that he's very tired, so I lay him down. Other days he is full of energy, and wants to play with his toys when he gets home.

Lately, a respite worker has been coming over to relieve us by watching Andy for several hours a couple times a week. This has been so awesome, because it gives us time to spend with our daughter alone. It is hard to go out in public with Andy, because he gets very loud, and can have meltdowns. It is a nice change to go out to restaurants or to do an activity without Andy being there. We are far less stressed and there is less anxiety about being out.

My daughter really appreciates all the time I have been spending with her. We both took a sewing class together last night. She really feels we are bonding again, which we haven't been able to do for a long time. We are trying to live our lives and get through each day as best we can.

There are times that I still feel sad about Andy's situation, but I don't let it linger for more than an hour or two. I try to distract myself by doing other things around the house, and planning events to get together with large family, or plan activities to do with my husband and daughter. Life is what it is and we have to deal with it and keep moving forward.

Sunday, September 20, 2015

Fall fun

Just checking in, the school year is going well. We just went on a Halloween camping weekend and had a great time.

Thursday, August 27, 2015

Confused about ABA therapy

When the child psychologist comes over to see Andy once a month, he tells me over and over that Andy is developmentally like an infant. He feels that Andy is like a 3-6 month old infant. Therefore, he feels that I should do things with Andy on an infant level. He does not feel that Andy can grasp advanced communication skills, or even self-feeding. He tells me that you wouldn't expect a 3-month old infant to feed themselves, or communicate with you using picture cards.

Andy at Disney World
I am confused whether to keep Andy in ABA therapy during the school year. He will be at school for five hours, and then I will take him to ABA therapy right after for another 2.5 hours. My husband and I already think this will be too much for him. I am going to start out with three days a week. The autism center would like him there after all five school days.

I am confused and torn, between what the child psychologist tells me, and what doctors tell me to do. I do feel that this therapy could be beneficial for Andy, however, I don't know if he is developmentally ready for it. The child psychologist would like me to simply work on getting Andy's attention, and keeping it for half a minute and build up to several minutes.

Once I can get his attention, and keep him from easy distractions, then the learning can begin. He feels that learning can't take place just yet, because Andy's attention span is so small. The ABA therapy center is trying to get Andy to pay attention and do things for hours. They want to help him to communicate with me by having him hand me picture cards.

This is a good idea in theory, but Andy just isn't there yet. His stamina is also limited. He will already be worn out when I pick him up from school, and will probably need a break/rest. I will be dropping him off at therapy three days a week and this may be too much. I will have to see how it goes, and make decisions using my gut feeling about everything.

Scheduling fun for myself

I scheduled several concerts this summer as a way to take a break from the stresses of parenting. I got to go to see Kid Rock in concert at DTE. He put on a great two-hour show, and Foreigner played before him for an hour. I had a lot of fun with friends and family. I also had a respite worker with Andy the next day to help work with him as I had gotten very little sleep. My husband stayed with Andy while I was at the concert. Kid Rock did not disappoint, and he brought it night after night. I would recommend that anyone see him if they haven't before. People that have seen him in the past make sure to make it back again and again. I was able to get good pictures with my camera.

Monday, August 17, 2015

Getting respite care finally

We finally have a respite worker coming to our house.  Respite care means that someone comes to watch your child to give you a break. Sometimes I stay here for a bit to get things done, and then I go out to run errands with my daughter. The worker is not allowed to watch any other children. We tried getting a worker to help us about a year ago, but there wasn't anyone available near our township. She is employed through a county program for special needs kids and comes here three times a week for four hours. The most she can stay per day is four hours, which is plenty of time for me to get things done, or have time with my daughter. We are grateful things have worked out for her to be here and help us. 

Wednesday, July 22, 2015

Andy's surgery went well

Andy did great with his surgery. The hospital did not put his IV in until he has already sleeping with a gas mask. He was also given an oral medication before that to get sleepy. He didn't feel any pain before the procedure, which was great! They were able to put pads on the sides of the hospital bed so that Andy wouldn't wiggle through the bars. Once he was starting to wake up, we were able to go back with him, which helped end our worrying. He has about a 3 cm long incision now, and we will confirm in a few days that it is benign.

Monday, July 20, 2015

Surgery day tomorrow

Andy is going under anesthesia tomorrow to remove a suspicious mole. It is most likely a benign cyst, but it must be removed to be certain. The mole may also be irritating him, so it seems best to have it removed. I am feeling a bit anxious tonight about it, but I think it will all go really well. 

Tuesday, June 23, 2015

Having a relaxing summer

Now that it is summer, we have been getting outside more. Andy enjoys sitting on the bench swing and going for rides in the wagon. I put a table across it, so he can play his toy piano. Lately, we are trying to just enjoy Andy in the moment, and not worry about what might happen in the future. He is a very happy kid, most of the time, and the crying episodes don't happen as much. It is nice not to be angry or sad about how Andy is, and just try to live our lives not dwelling on his condition. Both of us have felt far less stress in the last few weeks, and we are both a little relieved. We've both changed our thinking, and are coming to a better place of acceptance with Andy. It has made a world of difference. There are still days where we are sad and cry about it, but they are rare now. I am hoping I can stay on this nice path. I think Andy being in school a lot more this year has helped, and his recent ABA therapy visits. 

Friday, June 5, 2015

Extended school year denied

I had a meeting with Andy's teacher and therapists. I was asking if Andy was eligible to have an extended year, because he would get one if he was in a severely impaired program. They all felt he was meeting his goals and doesn't show regression during the two week breaks. I feel even with their data, he still would benefit from a longer school year due to his severity. For now, they will allow him to go to school through June, which is what they normally offer. He will attend therapy that we pay for in the summer. However, I feel it should be offered to him through school, but for now the answer is no.

Wednesday, May 13, 2015

Child Psychologist visit at our house

I spoke quite a bit with a child psychologist today. He interviewed me for about 45 minutes about what Andy can and cannot do. He asked me about the head banging behaviors, and face scratching that Andy does. He asked me about any health issues.

Andy loves swinging
The psychologist wanted to know what the physical therapist is doing with Andy, which for now is taking steps. He wanted to know what the occupational therapist is doing with Andy, which for now is hand-over-hand feeding and putting objects into containers. The psychologist suggested that we need to take a few steps back.

He says that Andy is operating at a 0-3 month level. However, I'd like to interject that he claps his hands and drinks water out of a straw cup, so there are some things he does that are in the nine month range. Nonetheless, Andy is still very infant-like. The psychologist suggested that because Andy is at such a low-level of infancy stage that we need to treat him more like a baby for now. He feels that he is nowhere near ready to feed himself or even put objects into containers, so that is why he isn't doing it. He'd like me to try to feed his sensory needs right now, which he feels will help with his meltdowns and frustrations.

He says I can do this by singing more to Andy in rhythmic ways. He says I should rock him more, swing him, and bounce him on my knee. He says I should swaddle him, and just try to get eye contact and smiling out of him. He says anything we would do to calm a 3-month old baby, and try to make a 3-month old baby happy. Shushing, and cuddling, and going for walks to calm him, and entertain him. This is what Andy needs right now, lots of sensory input. He also talked about compression and kind of laying him down to work his legs back and forth.

The psychologist felt that right now the most important thing to get out of Andy is eye contact and "shared attention" with each other. He says that if Andy can't pay attention, then learning will be extremely hindered. Suggestions for now are, bounce Andy on my knee and let him enjoy it,  then stop. When Andy looks at me and keeps eye contact, I can then count to three while still looking at him, and then start again. Whenever I stop, the hope is that Andy will look at me and use eye gaze to ask for more. Then I'm looking back at him and saying "okay, you want more? One... two.. three!", and we start bouncing again.

I did this just this evening and Andy loved it. He laughed so much with just me bouncing him on my knee. He really looked at me too when I stopped. It was like he was saying, "hey, let's continue this". He loved it so much, it made me feel bad that I hadn't been doing this before. All the motion is something that Andy doesn't usually get, because he can only drag himself around on the floor a small amount. This is supposed to feed his senses and help him to focus and cut down on the negative behaviors.

It makes sense to just try and get us sharing happy and fun moments together, instead of him just playing off on his own and not interacting with anyone. This is going to help build our bond, and give us moments of interaction. I am looking forward to playing out his suggestions. It was so helpful having him over to understand more of what Andy's needs and desires are, and how we can meet them.

Friday, May 8, 2015

Andy's been busy!

Andy at physical therapy
Andy is now in school for longer days twice a week, and he is receiving therapy after school on the shorter days two to three times a week. He's been very busy, and getting worn out, but in a good way. He will sometimes nap when he gets home, and other times he just becomes cranky around dinner time. I try to get him to bed early on some of those nights, but he isn't always willing to go to sleep.

The ABA therapy seems to be going well. He seems to be enjoying his time there. He isn't crying when I pick him up. They are trying to work on getting his attention, by having him track moving objects that light up and make noise like a toy phone. They are also trying to help him practice his pincher grasp and getting him to pick up forks or spoons and put them into a container. This will help lead him to self-feeding skills. Just grasping anything and holding it, then putting it back down is a challenge for him. He will often just drop things, but we instead want him to have a controlled release of the object. It is hard for me to work on these same things with him at home, because he often becomes very frustrated with the tasks. He will then start having a meltdown. I guess I need to find out what they do to combat meltdowns at the center.

My house is cleaned and organized now that I have had more time without Andy. I think he misses me, and shows it by cuddling up to me more when I'm holding him.  I think he's been crying a bit less too.

Andy listening to music to stay happy on a long car ride
I got to go to lunch with my husband today, which was awesome, while Andy was at therapy. I brought home the leftovers for Andy to eat once I brought him home. It was nice to see how much Andy was enjoying the food, and he kept showing me he wanted more by extending his hand towards the food. He then said a word so clearly, he said "yum", and it was so cute. I love hearing him say words, which is so rare. I always acknowledge that I just heard him say a word, and let him know I was happy to hear it. I know it is so tough for him to get any kind of words out. He doesn't ever repeat them.

It also seemed he tried to say "kitty", when I was having him take steps down the hall yesterday, and the cat appeared in front of us. I told him, "Wow, you said kitty! Yes, there's the kitty!". I hope that's what he was saying. I know for sure he said "yum", because I heard it loud and clear, and he was loving the food too. It is so awesome to hear Andy saying Anything, and makes me dream of the day that I will be having a conversation with him.

Monday, May 4, 2015

Working with my son's school towards positive changes

I asked my son's teacher several times throughout the school year if I could lengthen his school day by an hour or two. I was told no every time I asked. I was told that he could only be picked up at noon, or 4:00, and that was it. No other options were available.

Recently, it seems when Andy comes home, he gets really mad and upset. Almost like he wanted to stay at school a bit longer, and wasn't ready to come home. I always felt that a half day was too short, and a full day was way to long for Andy. I also felt that picking him up around 2:00 might work out better, because he has had therapy until 2:30 in the past.

I put in writing my concerns to the special education director. They had a meeting with me and told me right away that we could absolutely lengthen Andy's day. They also let me know that they had no idea why the teacher would have said no to this. So all in all, a positive outcome was had, and Andy is now having longer school days a few times a week. The other days, I pick him up at the regular half day, and then take him to Applied Behavioral Analysis therapy (ABA).

Andy seems to be doing well at the therapy and school. He is happy there, and I am getting a good report. Some of the days, he crashes and burns when he gets home. He refuses to take a nap, even though he needs one, and I can tell he is very tired.  Overall, he is responding well to all the new additional hours.

I have been working so hard around the house getting things done now that Andy is out of the house for several extra hours each week. I've been on a cleaning and decluttering frenzy, and my house looks great. Andy seems to be benefitting from extra hours and is happy to be at school more, so I am very happy to see this positive change.

Monday, April 20, 2015

Trying to find SXI programming

I am trying to get what Andy is entitled to, which is a free and appropriate education. I recently discovered on Andy's IEP paperwork, that he is in a moderately impaired program, and not a severely-multiply impaired program. I thought he was in an SXI room, but then started talking to some county representatives and found out that he is not.

The schools don't want to be forthcoming with people. They want to give out the minimum possible, and you have to play detective to figure out what your kid is truly entitled to. I started wondering why Andy isn't being offered a full summer program. I spoke to a county parent advocate and also a social worker at a good school with an SXI program.

I found out that when kids are classified as SXI (severely multiply impaired), they are entitled to more than the standard 175 days a year of school. Some programs offer 205 or more days, which takes the kids through the summer, without more than a two week break.

Andy's school is not offering this. I put in writing to the special education director of my son's school, that I am concerned that his program isn't meeting his needs. We are meeting this week, because they have to respond to concerns in writing within a certain number of days. The school will either have to re-design his current program, or pay to bus him to an appropriate program in a "neighboring" school district in our county. I will know more in a few days.

We have already spent a few years under the false understanding that he was receiving SXI programming. They have gotten away with giving him the bare minimum for too long. It's time for a change.

Wednesday, April 1, 2015

Getting therapy lined up for summer

I am trying to figure out Andy's therapy schedule for the summer. So far, it may include private PT, private ABA therapy and possibly some days at an extended school year with his Kindergarten teacher. 

Based on what the insurance company is approving, I don't think Andy will be able to attend therapy on a daily basis. This might be good, because he is only allowed to miss ten days of therapy for the year. So, I figure if he is just going three days a week, it will allow us to have long weekends sometimes for camping or waterparks. 

It will be nice to have a more flexible therapy schedule this year. Last year, it was very rigid and set in stone, and I felt I couldn't change any of the dates or times. This year, things seem to be more flexible, which makes the whole family happier. 

Tuesday, March 31, 2015

ABA observation

Andy's ABA observation appointment went well. He was crying at first and a bit cranky, but we got through the hour long observation. I brought a container with small bits of cut up sandwich, so that he could have lunch. The therapist wanted Andy to do something in exchange for his sandwich bites, which I figured would happen.

Andy became in a better mood as he was eating. The therapist wanted Andy to pick up a small block and hand it to me, before he would get a bite. Andy has never handed me anything EVER. So, I was really feeling like this wasn't going to happen. I would give Andy the block, and he would hold it and not want to let go. I cupped my hands under the block, asking for it, and when he let it go, he would get another bite.

I was surprised that Andy was trying to put small blocks into a small square container. I don't see him do this too often, but know he is working on this with the OT at school. He did this several times, as they wanted to see if he would "dump and fill". I was pleasantly surprised that he was doing what they wanted to see.

Now that they have seen where he is at with his skill level, they will come up with a treatment plan. Andy should be starting up his therapy in a few weeks. I am looking forward to see what he will take away from this therapy.

Thursday, March 12, 2015

ABA Therapy Intake

Andy's ABA therapy intake was completed today. It included interviews and questionnaires with me about his behaviors. Now an observation time has to be set up with Andy. Then a treatment plan can be written up to hire and train staff for him.

After the staff are trained, they will call us to set up a time for Andy to start coming in for therapy. This will take several weeks, but I'm glad I got the ball rolling in the right direction. Andy has benefited from ABA therapy in the past, and will now return to it with a new insurance policy.

His past employer-based insurance did not fall under Michigan's Autism mandate voted in to require insurance companies to pay for Autism services. His new individual policy purchased just for him falls under the Autism mandate, and services have been approved. The center just has to create a spot for him now, and he can get back to it.

Thursday, March 5, 2015

Andy is a mosaic of disabilities, time will tell what's in store for your child

I just wanted to point out that Andy doesn't only have a thin corpus callosum, or only microcephaly. Andy has layers of problems with his underdeveloped brain that go deep into his DNA. I am saying this because I notice parents are searching out "thin corpus callosum" on the internet, and perhaps getting this blog. I just want to reassure you that there are tons of kids with only a thin corpus callosum that do really well. There is a wide spectrum of things that can happen for kids with microcephaly, and developmental delays. Things can be mild or severe with any diagnosis it is impossible to predict where your child will fall.

I don't want to worry any frantic parents searching the internet that my son is what your infant with agenesis of corpus callous will look like. The truth is, no one can really tell you what your child's possibilities will be. It is the toughest most cruel and challenging waiting game EVER.

For years, it's been torture, but I've come to terms with everything now. My son's major area of concern now is the microdeletion he has within his DNA. He is missing two major genes that are most likely causing him the inability to learn like normal kids do. He also demonstrates autistic behaviors, along with high irritability, which a neurologist explained was probably from the corpus callosum not being fully connected.

His brain is very underdeveloped and he has low amounts of white matter. All variables are extremely stacked against him. However, he is blessed, in that he can eat food, he can laugh and squeal, army crawl after toys, and use his hands to get them. He is even now able to open and close his toy computer on his own. A year ago, I'd have never thought he could do this.

It is good to see what might lie ahead, to brace yourself for it, but I really haven't seen any two kids alike on the internet yet. Kids surprise you, and my son has surprised me. It has taken so many years to see so little progress, but I'll take it.

We are blessed that he is so happy now, and he enjoys life. He has so much joy, so I have stopped feeling so bad for him, because he is happy. He doesn't know any different. He doesn't know what he might be missing. He has friends that love him and really enjoy being around him. He has his own little life and people other than his family that truly care about him.

He's a charmer. He has his own little personality. He's so innocent. He wouldn't hurt anyone ever, and doesn't even know how to. He is a kind soul, and enjoys being around other kids. Certain things make him laugh, and he really laughs out loud. He loves music, it makes him so happy, and calms him when he's upset.

He's got his own destiny, and I'm here to care for him. I've finally allowed myself to have my own life, and he has his. All the major ups and downs will slowly level out for you with time. It just takes time.

Saturday, February 28, 2015

Our insurance company has authorized ABA therapy

We got a nice surprise in the mail today. Our son's individual Blue Cross Blue Shield of Michigan insurance policy has authorized ABA treatment for Andy. The letter they sent also states that the notification we received does not guarantee payment for services. However, they are authorized. It is a little confusing.

They are allowing 600 units of Therapeutic Behavioral Services, with a unit being 15 minutes. It looks like the authorization is only good through March 31st, which doesn't give him much time to get started back into the program. I don't even know if they have trained staff for him yet. Hopefully, the center will be in touch with us soon, and can get these dates extended. They are also authorizing home care training, and training to the home care client, which would be me.

The authorization was done by an outside company called Magellan Behavioral of Michigan. The procedure codes authorized were: H0031, H2019, S5108, D5111, and H0032. These codes were denied by my son's previous Blue Cross policy, because we supposedly didn't have autism coverage on that policy. However, when I called the previous insurance company's policy reps and gave them the above codes, I was told they'd be covered at 90 percent. Then they rejected all the claims.

His new individual policy has Autism coverage, and falls under the state mandate on Autism coverage. Apparently, 80 percent of employer given insurance policies do not fall under the Autism mandate. So, we sought out an individual plan, and asked specifically about the Autism coverage before signing Andy up for it. What a hurdle this has been.

Tuesday, February 24, 2015

Revisiting private PT again

We are headed in the direction of Andy receiving private Physical Therapy again, in addition to school physical therapy. He will be seeing a therapist that he is already familiar with at U of M rehab. I talk with the school PT on occasion, but sometimes it is nice to have additional opinions too. Plus, if he needs to have therapy over the summer, then we will be better able to have it for him.

I just picked up Andy's new Ankle Foot Orthotics (AFOs). He has boots that are two sizes bigger to go over them. Andy's stance is already becoming stronger, so I'm excited to see how much better he will do with the new braces on. They go up to just below his knee. They are supposed to help support his legs and put his feet into the correct position.

Andy currently takes about 200 steps a day, with my help. I hold him at the shoulders and stand behind him. He is not steady enough for me to stand in front of him, or hold his hands. He would have to be able to hold the stance on his own, in order to do that. I don't think it will be very long now until we will see him being able to stand for a few seconds on his own.

Andy does not pull to stand up, or get on all fours, but I know this will come later. He will start to learn this I think as he gets more motivated to get up on his own. It is just what I think after observing him for five years. He has to be motivated on his own, to build the confidence to try new things.

Monday, February 23, 2015

Sunday, February 22, 2015

Moving Along

Andy and I are moving along nicely. We are having very happy and pleasant exchanges with each other, and our bond is stronger than ever. I can tell that he loves me so much. It might be due to him being on his feet a lot more. It is supposed to be very good for the brain.

He has been taking assisted steps now, every day, for months. Every little bit is building up to small amounts of developmental gain. We are both very happy. His crying is down to a minimum. He shows love for me all the time with big smiles, and cuddles. He enjoys school, and I am working on finding some ABA therapy for him again.

The family as a whole seems much happier. I feel I can focus on other things, and that our world doesn't revolve around Andy. He is a part of it, but not all of it, all the time. Things are balancing out a little better and it's been great! Despite the absolutely frigid temperatures we have here, we are all feeling much better lately.

Saturday, February 14, 2015

Need to get back to ABA therapy

It is clear that Andy needs to be back in ABA therapy. They work one-on-one with him on his exact needs. I am learning from my county services offices that ABA therapists don't typically go into the schools. They advised that I contact the special needs director for my son's school district, to ask about having ABA put into his IEP. However, they are doubtful that this will happen. They said I would most likely have to split his day between school and private or home ABA therapy.

The problem is that the last center I had Andy in did not like that option. They wanted him full time at therapy, which we could not afford. Our insurance company would not pay his claims either. Now we have purchased a new insurance policy for him that will hopefully cover ABA. For now, I might just have to settle for Andy being in ABA therapy for the summer, and he would be lucky to get that.

The current school program that he is in is teaching things like writing letters, and days of the week. Andy isn't developmentally at the stage to learn these things. He doesn't communicate a whole lot to anyone, and is still immobile, unable to self-feed, and like a 6-8 month old.

His school provides structure to his day, and gets him out of the house, but I don't know what he is taking away from it. Many professionals have told me his only chance at advancing is through one-on-one ABA therapy. I think I believe it to be true now. I'm not seeing Andy progress anywhere as of now. Whereas before with ABA therapy, he progressed a small amount, which is better than nothing.

I am very stressed with all of this new red tape to deal with and going back into unknown territory. The super cold 0 degree weather is also very non-motivating and makes me so tired. I continue to try and set small goals for the week, so that I can feel like I am accomplishing something.

Tuesday, February 3, 2015

Andy had a Snow Day

We had 16 inches of snow fall in a day and a half, so the kids got to have Monday and Tuesday off of school. Andy can get pretty bored when he doesn't get to go to school. I had to use his headphones a few times to keep him happy. He loves listening to pop music, like Black Eyed Peas, Kesha and Katy Perry.

On top of all this, my daughter quickly developed the stomach flu, which I then got several hours later. We were both so miserable the whole evening. I have been scrubbing my hands and keeping my distance from Andy. I'm praying he will not get this too! He isn't showing any signs just yet, so hopefully we will be lucky on this.

I was able to keep Andy busy with beads and other toys that he can keep fidgeting with his hands, like play food. He also likes his piano toys and toys that play music. Luckily, my husband was able to help out with him a bit today, because my stomach was hurting to badly it was hard to stand up.

It will be back to school tomorrow, so Andy should enjoy that. His friends are always missing him too, when they don't get to see him. If he doesn't end up getting this flu, I will be absolutely thrilled.

Monday, January 26, 2015

Andy has been happy

Andy's been in a great mood lately. He's been squealing and laughing a lot. He's doing much better at school now that he is only going for half days. He has also been far less constipated. I have been regularly giving him stool softener, and it is helping him a lot.

Andy is taking lots of steps around the house, while I hold his shoulders. I think it makes him happy to be upright, and doing things other kids do. He's overall pretty happy most of the time, which is a big change from two years ago.

Hopefully, two years ago was a crying jag that will not be seen again. It was years of frustration for both me and Andy, because neither of us understood each other. He was having major constipation issues, and feeling badly all the time. I was upset and in tears all the time, because I didn't know what to do for him to bring relief.

Andy showed me a little bit of love today by leaning in towards my head and kind of hugging me. Those moments never occurred years ago. Now I've gone from feeling so lost and afraid to feeling so lucky I have him.

Sunday, January 11, 2015

Kimba Ottobock Stroller Leckey model

I really regret getting the Ottobock stroller for my son. The main reason I dislike it so much, is because it is so heavy. The second reason is that it is always falling apart. Screws and other pieces are constantly falling out of it. You have to check it over and tighten everything by hand once a week basically to avoid losing pieces on the thing.

If you go several weeks without tightening screws and knobs, the stroller becomes very wobbly and starts falling apart. This is a four-thousand dollar piece of medical equipment. It's been a big headache if you ask me. Just wanted to put this out there, so that if you are thinking about getting one, maybe you'll think again.