Thursday, July 17, 2014

Week Two of ABA therapy

Andy is still getting used to the new routine of getting up in the morning and getting ready for therapy. I tell him that he is going to go play today. Sometimes, he cries all the way to the therapy building (25 minute drive). Other times, he's happy in the car.

Some days, after working with Andy, they tell me he had a good day and played well. Other days, they tell me he had tantrums throughout the day. Some days, he won't eat much there and can't easily be consoled. I told them to let me know of this in the future, as he might have a headache or gas issues, that could be solved by me bringing up some medicine.

It has been nice to have them working with him for several hours a day. I can tell that they are worn out when I pick him up. He is a lot of work, and can be quite exhausting, I know.

Monday, July 7, 2014

Me and Gabby time

There has been such a huge relief that has come along with my son Andy being able to attend an ABA program several days a week. It has allowed my daughter and I to spend time together this summer. Previously, his preschool wasn't long enough to make lunch plans. I had to be home at noon to get him off his bus. Now, he is going to school a bit longer. So, we made plans to go eat lunch with my mom.

It was so nice, and non-stressful, that I could have cried. I didn't have to worry about Andy's constant squealing and screeching and all the loud noises he makes in restaurants that make people stare. You can also tell that they are wondering, 'why would they bring him here'? Well, we need to eat too, and I  occasionally deserve a break from cooking. You can't always get a babysitter when the mood strikes on the spur of the moment. There are just so many reasons why we bring him into a restaurant, and we always leave thinking, never again. Or at least until I'm feeling brave again.

But not today. I wasn't in a hurry, or frustrated with my son. I didn't want to rush the waiter to stop talking and get the order in, we just sat there with no worries. I wanted to cry because it was too good.

We can shop without Andy kicking and screaming in the cart, and actually try on clothing without trying to keep Andy calm. Luckily, my daughter enjoys shopping, especially if she is going to get something out of the deal. We got to step onto an escalator, which we never do, because I am always pushing Andy around. My daughter thought it was magical and so cool. She wanted to go up and down, and hold my hand getting on and off, because it was a little scary too. And so we did.

She checked out all the "fashion gowns", leftover prom dresses and picked out one for me to try on. She told me to please put it on, and then twirl around. So I did.

I am just so grateful, and am happy to get some time with my daughter.

Week one of ABA therapy

Andy has completed one full week of ABA therapy. He isn't crying upon entering the building any more. He has learned that it is a fun place, and that they will be playing with him there. He is receiving therapy five days a week. He has fun there, and only gets fussy at times.

On the fifth day of therapy, Andy was very worn out. He was having trouble keeping his eyes open, when I picked him up and then put his head down on his tray. He never sleeps in the car, but on this day, he slept all the way home.

I am supposed to attend a parent seminar on ABA techniques for parents, so I'll write about that after it is over. So far the center has been great, and Andy seems to be trying to communicate a bit more with us.

Wednesday, June 18, 2014

ABA therapy starting soon

Andy will be receiving ABA therapy soon, several days a week. He has been in for observation twice, and he did not do well. He cried a lot, and had fits. I was so frustrated. I could hear him screeching behind the walls as I was sitting in the waiting room. I think it is because he doesn't know the center yet, or the people. He just knows that I am handing him off to these strangers, and is taken back into a room filled with loud kids, and he gets frustrated.

I've been feeling so sick about it lately. He usually enjoys therapy and school. But he isn't giving this new center a chance. He cries as if they are cutting off his leg. I can see through the window that they are just trying to play with him, and speaking nicely to him as well.

I was looking forward to him getting to spend some time at this new center, as a fill in for school. He doesn't understand why he doesn't have school right now, and he isn't getting to ride the bus. My fuse is so short lately. He is so whiney and cries a lot. I can't always get him to stop. Sometimes, he just needs to be alone. This too shall pass- is all I've got.

Monday, May 19, 2014

Andy's 5th Birthday

We celebrated Andy's 5th birthday yesterday! He was a little overwhelmed with all the people over. His sister Gabby was also celebrating her 7th birthday. Andy laid down for a long nap during all the commotion.

I've been trying to remember to make sure I hold him in a standing position while he's playing at least once a day. We also have a stander that keeps him on his feet with a table in front of it to put his toys on. Andy is actually seeming to want to stand more often now. If he gets fussy on the floor, sometimes me holding him in a standing position helps him to calm down.

We were at the park today and I stood right behind him and had him leaning against me while he was standing. Then I realized that it is better to have him holding himself up, so he can practice balancing himself. So, I kept putting one of his hands on the bar and telling him "you have to hold on, or you'll fall". I still stayed right behind him, because he forgets and lets go.

I was happy to see that sometimes he'd switch hands, and hold on with the opposite hand and play with his free hand. That made me so happy to think that he is understanding something. He still continued to let go though and fall backwards. When he did this, I would just put his hand back on the bar and tell him again, "Andy, you have to hold on", and he would hold on for a few minutes.

I use his chair to transport him to and from the park. Today he was really fussing once we got there. He just did not want to be in the chair any longer. So, I put him in the swing for a bit, then we moved on to a standing activity. I think it wore him out pretty well. He was real tired when we got back home.

Sunday, May 11, 2014

Andy continues to make sounds

Andy makes more and more sounds every day. He now says "bay, bay, bay" quite often. It used to be rare to hear it, but now my daughter and husband have heard him say this too. Sometimes he will even say a distorted version of baby. I think the fish oil is helping him. He is also shy to talk, so he is becoming more confident to try to speak.

Yesterday, he was in his room resting and needed a diaper change. I was in the hallway and thought I heard him trying to say "help". So, I went into his room to say "Andy, did you say 'help'? Oh, you did say help, you need a new diaper!"

It is truly exciting to think that he may be on the road to verbally communicating with us. We have yet to hear from his ABA therapy center. I have to call them this week and see what the hold up is on getting his first appointment set up.

Summer is fast approaching as well, and I have to get summer therapy and recreational plans in motion. I've also been sprucing up our house by putting paint colors on the wall, and it has everyone in a better mood. The house is currently all white, and needs to finally get some personality! We like the results so far!

Tuesday, April 15, 2014

Andy's IEP was today

Andy's Individualized Educational Plan (IEP) meeting was today. His preschool teacher spoke with
Andy's future kindergarten teacher during the meeting and gave tips on how to soothe Andy, and spoke of his likes and dislikes at school. I also informed them of Andy's new Autism diagnosis, and of how I am going to give Applied Behavior Analysis (ABA) therapy a try with him as well.

I also brought up concerns of possibly needing bus transportation next year for Andy, despite living very close to the school. Unfortunately, there are big physical challenges/obstacles to getting him to the school in his wheelchair. One of which used to be missing sidewalks! This issue was resolved, but ramps/approaches still need to be added to current school walkways as they are not handicapped accessible.

The weather has also been a huge issue this year, more so than ever. This winter has been a terrible one, and it makes me worry of how I am going to get Andy to school next year in his wheelchair without constantly getting stuck in the snow all the time. This prompted me to add a transportation statement into the IEP, which notes that "Transportation by bus with a lift and tie downs needs to be available at the request of the parents". The reason for this is because I don't expect to be needing to use a school bus for Andy unless we have bad weather conditions.

This winter 2013-2014, Michigan has had record breaking snowfall of 94.8 inches. This has surpassed the old record of 93.6 inches in the year 1880 to 1881! Which for me, meant that I had trouble getting my son to my daughter's school in his wheelchair at times. His wheelchair became stuck in the snow on several occasions, due to my subdivisions lack of clearing the common area sidewalks, and my daughter's school not doing their job of clearing snow away properly. It was very nerve racking and hair pulling to say the least. Luckily, I didn't have to bring him to the school very often, but next year I will have to daily.

The picture above shows me at the park with Andy just days before the final record breaking snowfall. We were at the park enjoying a lovely 70 degree day, and then several days later the temperatures plummeted down to 30 degrees and we got two inches of snow. I know the weather has been crazy everywhere, and I have come to expect the totally unexpected as normal for the past few years now.

I'm very excited for the upcoming school year, and I think Andy will be too. I think we are going to start seeing some wonderful changes in Andy. It will be so great to have him involved in highly beneficial programs that will help him flourish.

Wednesday, April 9, 2014

Exercising is helping me be a better mom

It never fails, I was trying to get my new routine started of working out a couple times a week, and I picked up strep throat somewhere along the way. Which I then gave to Andy. It was a bit of a road bump.

I went to some exercise classes for a couple of weeks, and the results of feeling less stressed about Andy and family life were immediate. I really enjoyed exercising and taking time for myself. I seemed much better able to handle the stresses that Andy deals out. I was also happier towards him, more understanding, and sleeping better through the night.

I've also been working on trying to be more understanding with my daughter. A lot of times I am not very forgiving with the fact that she is only six, and doesn't have a lot of logic and comprehension of things. I find myself having a very short fuse with her every day.

My bowling league is coming to an end, which was a night out that I got each week. I should really substitute that night by doing something with my daughter, but I'm sure it will rarely happen. There are always so many things that come up, and it is just easier to stay home.

In more exciting news, Andy is occasionally attempting to put random syllables together! They sometimes sound like real words. He blurted out in the grocery store today after a lot of high-pitched squealing, "Haaaay, ebb-er-body" and then nothing else. It was exciting to think he is attempting to talk.

I am currently on the kick again of giving him the fish oil squeeze packs once a day. I think it is stirring up something in his brain. I am going to try to keep it going a bit longer this time, before giving up on it. It's so easy to throw in the towel with it and think, it isn't showing me any results, just forget it. But I think it has a cumulative effect and you really have to just keep up the faith and give it daily no matter what you are seeing come out of it.

Any other tips on how to get him to talk to us would be great!

Saturday, March 29, 2014

Andy's been officially diagnosed with Autism

It has been recommended to me by several health professionals to have Andy evaluated for Autism. I was told this would become more important around age 4 or 5, but the concern wasn't heavy at 18 months old, but mentioned to me. I recently realized that a lot more services could become available to Andy, should he receive a diagnosis of Autism, so I was interested in pursuing it, as he is approaching five years old.

My insurance company, Blue Cross Blue Shield of Michigan (BCBSM), has to have several things
happen before they will accept a diagnosis of Autism. Once all of these things have happened, a case can be presented to them for the approval of the need for Applied Behavioral Analysis (ABA) therapy. These things are: psychological evaluation, speech evaluation, and neurological evaluation.

The DMC Children's Autism center extensively interviewed me first, as part of the psychological evaluation, asking me "yes" or "no" questions about Andy's behaviors. A lot of the questions were, "since he was four years old, have you seen this..." Or they would compare when he was a newborn or toddler, compared to, since he was four years old. The next part of the psych eval involved a one-hour observation of Andy.

They wanted to see if Andy would share things with them. He did not. He keeps to himself while playing. They wanted to see if he would respond to his name when called, he does not. They mimicked having a sick baby in the room to see if he would show compassion or concern, he did not. They tried to see if he would try to draw them into his play, like extending toys to them, giving them something if they asked for it, would he look at them to want them to come join his play, he did not.

They met with the speech pathologist, and neurologist and looked at all the psychological reporting and observations. They had me come back in for a feedback visit. They told me they feel that in addition to Andy's mental and physical impairments, that he also has Autism. They said that it can be difficult to tease out what behaviors are from his developmental delays, and what is from Autism.

Andy also exhibits lots of hand flapping by his face, putting objects and his fingers to his mouth, covering his face due to loud noises or when he's frightened, and they feel these behaviors could be from the Autism part of it. He has self-injurious behaviors, such as head banging, and face scratching. He has frequent meltdowns, at any time , and at any place. He doesn't show awareness of what is socially right or wrong.

I have never had an opinion on whether Andy has Autism or not. I went through with these evaluations, because I want Andy to receive the maximum amount of services that he deserves. Now that he has this diagnosis, he can possibly start to receive intensive ABA therapy, which has been shown to very positively help children with Autism, developmental delays and other disorders.

The paperwork they sent home with us also shares several Autism websites and techniques that can be used to increase Andy's communication with us. I will list these below. The PhD delivering the news told me that one of the main goals of the ABA therapy is going to be to increase communication. Other goals include: increasing peer-interaction (responding to children, interest in peers), socio-emotional reciprocity (offering comfort), play and leisure skills (imitation, pretend play), shared enjoyment and offering to share. I cannot schedule any ABA visits until my insurance company approves it, which will take a couple weeks.

The documentation will also be helpful to submit to the school because it states that according to the American Academy of Pediatrics (AAP), for young children with a diagnosis of the autism spectrum the AAP recommends:

  • Intervention consist of a low student-to-teacher ratio to allow sufficient amounts of 1-on-1 time and small group instruction to meet specific individualized goals. 
  • Provision of intensive intervention, with active engagement of the child at least 25 hours per week, 12 months per year, in systematically planned, developmentally appropriate educational activities designed to address identified objectives.
  • Inclusion of a family component (including parent training as indicated)
  • Promotion of opportunities for interaction with typically developing peers 
  • Ongoing measurement of child's progress toward objectives
  • Incorporation of strategies to apply learned skills to new environments and to maintain functional use of these skills.
For further information regarding the American Academy of Pediatrics' recommendations on treatment of children with ASD, please go to:

Here are the web resources they shared with me for Autism:  (Association for Science in Autism treatment)   (NIH Autism fact sheet)

Saturday, March 22, 2014

Speech sounds are improving, Andy's been drinking from a cup

Over the past few weeks, we have slowly been hearing Andy babble more and more. It used to be extremely rare for me to catch Andy babbling. His choice sounds are ma-ma-ma, or ba-ba-ba. For the
last year, the only babbling we would hear Andy doing was usually in the bath tub. Andy's speech therapist told me that being immersed in water is very stimulating for kids, and this is why we see the vocalization kick up when they are in the tub.

Still it was rare, I would even try to catch him on video babbling and couldn't get it. By the time I put my phone on the video setting and hit record, he would already be done babbling. Recently, I've decided for the tenth time to revisit trying to have Andy drink from an open cup. I filled a dixie cup to the top with water and put it to his lips. He actually cupped his lips this time and got a sip.

We celebrated and told him what a big boy he is. This motivated him to want another turn. Lately, every day, I've been trying to offer him a cup to drink from at least once a day. Andy's current preference for drinking is a cup with a straw in it. He will not lift the cup. I offer him drinks when I think he's thirsty, or if he eye gazes at the cup. Sometimes he will overreach for the straw cup and knock it over, and I take this for him wanting a sip.

According to a feeding (oral-motor) therapy presentation I read by Renee Roy Hill,SLP, it is important to offer kids different methods of drinking liquids. Different facial muscles are used for drinking from a straw, and drinking from a cup. The muscles of the tongue have to be used differently as well with different drinking methods, and this is important in children learning to develop different speech sounds.

I even learned from this presentation that choosing the right cup can be important. I noticed that Andy only likes to drink from paper cups right now. He doesn't care for the feeling of glass or plastic cups. Hill also suggests that having your child start out with drinking thicker liquids at first is better. She notes that thickened liquids are easier for patients to control, when learning a new muscle skill. You can then move to thinner liquids as their skill level increases. I noticed that the chocolate whole milk you can buy in stores is quite thick, so I am going to use that, plus maybe some smoothie mixes.

The last few weeks have been exciting for us, because Andy is now babbling at all times, and it is not just limited to the bath tub. He wakes up saying "ba-ba-ba", as if he is so excited to get all these new sounds out. He babbles more in the car, and around others. It seemed before that if you interrupted his babbling to even say,"good job talking", then he would stop doing it for the day. Somehow though, he is becoming less shy about it, and even babbling when I have him in public.

I really do feel that us offering Andy the cup to drink, has been helping with him wanting to babble more often, and his ability to babble. However, Hill notes that feeding therapy should not be the only thing used when working on speech production. She stresses that oral-motor therapy/feeding therapy should be used together with other speech therapies to continue to gain speech production from the patient. Andy continues to receive speech therapy twice a week at school, along with my feeding efforts at home. We seem to be seeing results!