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:
http://pediatrics.aappublications.org/content/120/5/1162.full.pdf+html

Here are the web resources they shared with me for Autism:

http://www.autismspeaks.org

http://autismallianceofmichigan.org

http://autism-mi.org/

http://michigan.gov/autism

http://www.asatonline.org/  (Association for Science in Autism treatment)

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm   (NIH Autism fact sheet)

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!

Clearing up constipation for less irritability in low-toned kids

A common problem in low muscle-toned kids is constipation. For years, my son has suffered with constipation and still does. Lately, it has been way lessened due to dietary changes.

I never realized before that constipation does not mean "no bowel movements". So, when asked by doctors if he was constipated, I would say answer "no". I didn't realize he was experiencing cumulative constipation, and passing of small bowel movements was a sign of this.

Doctors showed me how to feel on my son's belly while he is laying flat on the floor. While feeling on his left side, they directed me to take a feel just below his hip. It felt like a bag of hard marbles was under the skin. This was hard stool waiting to be evacuated. I was told to buy a pediatric enema at once and administer once a day until he produced large stools. The enema worked right away.

Constipation can mean small bowel movements, which aren't giving relief. It can also mean, hard to pass stools. For my son, this lead to inconsolable crying and high irritability. Andy is non-verbal, so he can't tell me that his stomach hurts. However, I could see that he was straining to go, and making grunting noises and crying with his legs bent up to his chest.

Here are some tips on what I do now to manage his constipation:

Try to mimic movements: For my son, I have to get him standing several times a day. I may bounce him around on his bed, or on my knee. He enjoys the motion. I also try to get him into a crawling position, which is good for passing gas and building up bowel pressure. I lay him on his back and bend his knees and straighten out his leg again, doing a bicycle motion with his legs. This helps the bowels to move through.

Introduce more fruits and veggies: I have slowly added healthy snacks to his diet, such as fresh pineapple. I buy it already skinned and I cut it up. He ate a half a cupful the other day, and he was moving his bowels in no time shortly after. The acidity of the pineapple really gets the bowels moving as well.

Introduce fiber: I was instructed by a physician's assistant that you have to add fiber very slowly, as well as fruits and veggies. She said that slamming a bunch of fiber into your body can make you miserable with bloating. I found this to be true when eating part of a fiber bar. She told me that you might have to cut up the fiber bar into small pieces and just eat a small amount each day for a week. During the week following, you can try to add a small bit more. This will allow your intestines to get used to this new fiber coming in and manage it. Since Andy is non-verbal, I have to look at his cues to see if he is in any discomfort from the foods I'm giving him.

Use stool softeners as directed by a doctor: For my son, he requires stool softener once a day in cold water. I give it to him at lunch time with his meal when he is quite thirsty. This way he drinks it all at once.

Offer plenty of water and juice: I have to push for Andy to drink water, because he will not reach up and grab for a drink himself. I was told to offer grape or apple juice in the morning and get it out of the way early. The juice helps the bowels to get moving. Then I continue to offer more water, and the water with stool softener in it once a day. Water is very important to not creating a hard to move stool problem.

Last but not least, enjoy being more healthy! Watching over Andy's eating habits has helped me to eat and feel better too. I can tell that I've executed a job well done when he is is happy and cheerful more often than irritable.

You will find what works best for your child as you monitor and change their diet. Some things that work wonders for some people might not do anything for you or your child. You just have to keep trying different things and stick with what works best for you. I also consult with a doctor, when I feel that Andy's stomach may be bothering him, and I have been unable to help him.

Cleveland Clinic bound to see Dr. Parikh

We were told by our Physical Medicine and rehab doctor, "It's time for the big guns. You've seen a lot of specialists, now it's time to see someone that is smarter than all of us". She wants me to take Andy to the Cleveland clinic, to see Dr. Parikh. He is a neurometabolic geneticist. He specializes in mitochondrial  disease, and has been very successful in diagnosing other genetic syndromes in undiagnosed children. We will be going in June, unless there is a sooner cancellation. It is about a three hour drive for us, which isn't too bad. It's worth a shot. I would like to know if Andy's syndrome can be passed on to future children. It is important for me to know. 

Also, we received a call today from Andy's current geneticist's office telling us he is now retired. When we saw him in January he reassured us he would search for anything he could do to help us. Looks like he decided to get out of town instead...

IEP meetings can be recorded, according to United States law

Someone from a behavioral disorder Facebook group shared the following article. It states that according to Federal law, laws regarding conversations not consented to being recorded don't apply to IEP meetings. It also further states that the school may not retaliate against you for recording an IEP meeting conversation.

http://www.disabilityscoop.com/2014/03/14/feds-retaliation-not-ok/19191/

We went to Castaway Bay Waterpark in Sandusky Ohio

We optimistically scheduled a road trip 2.5 hours

away to go to a waterpark/hotel. It turns out,
it was just what Andy needed.

His behavior is always dicey in the car, and when we are away from home. However, Andy was really great on the way there and at the hotel.

We stopped every hour to let him out of the car. When we got to the hotel and had to wait a while to check in, he was so happy in the stroller. He was just squealing and looking around at the big pirate ship and fireplace in the lobby.

We didn't get our room until 3pm, but we were able to change in a bathroom and put our stuff away with the front desk to swim until the room was ready. Andy even took a nice nap as soon as we got in the room, and the next day, which really helps his behavior.

We travel with a blow up bed we bought from Walmart. It comes with a pump and a canvas bag to carry it in. He isn't able to get out of the bed and he is able to roll around and army crawl. However, he doesn't know how to sit up on his own and stays contained in this bed which has sides on it that are about 6 inches high. Andy is 39 inches long, I think the bed is 48 inches long, not including the inflatable sides.

We got a room with a bunk bed in it, in addition to a bed for my husband and I. My daughter really enjoyed it, because she could play with her cousins in there. They had a desk with three seats and their own TV, which made them very happy. The bunks had rails on the top, so even Andy could play with his toys up there on his belly.

The wave pool was great, and it was where Andy and I were most of the time. He was even allowed in the hot tub with me. He only had to be in it a few minutes, then he would fall asleep in my arms. It made him so cozy.

We had a great time and decided we should do this more often.

Andy army crawling

Here's a video of how Andy currently gets around a single room. He only goes about five feet and doesn't venture far. I have not seen him crawl down a hallway or into another room without being coaxed to do so. He doesn't seem to be interested in exploring, only in getting to his toys within reach. He doesn't really "get into things", which is good, but it would be nice to see him wanting to explore the house.

What I've learned about Anti-psychotics for irritability, aggression or inconsolable crying

Oh my, we've tried quite a few anti-psychotics and other drugs for irritability for Andy. I was at the end

of my rope and begging neurologists and doctors to please prescribe something. I couldn't take Andy's crying any more.

Looking back on it, I wish I could have seen Andy's first signs of constipation, that was most likely due to his low muscle tone, or hypotonia. He was having daily bowel movements, so I wasn't under the impression that he was constipated. The problem was that the stools were small, so even though they were daily, he was probably having a cumulative constipation problem. His crying could have been due largely in part to this.

Before the prescription drugs even started, there was possibly an initial constipation issue. Pour on top of this anti-psychotics such as Risperdal (Risperidone), Abilify (Aripiprazole), Trileptal (oxcarbazepine), and we got disaster after several weeks on these drugs. The drugs seemed to have an initial sedative effect on Andy. He seemed more calm and sleepy. Then his constipation worsened, every time. Despite giving stool softeners, and dietary fiber, his constipation worsened as the dosages became higher. The constipation lead to MORE aggression and inconsolable crying. Not to mention all the constant grunting, which I thought at first was just his normal noises.

I also noticed that each drug was only effective at putting him in a sedated state for a maximum of six months. His body would continually get used to the dose, and I would have to slowly raise him to the maximum dose, and then he would get used to the drug, and it would be ineffective. The constipation was truly horrible. I still have to monitor his stools, to try and help him when I see he is constipated. His crying is directly related, on top of his frustration that he cannot communicate with us.

My advice to anyone that is considering using these drugs ESPECIALLY on a non-verbal child who cannot tell you that his belly hurts, and he cannot poop is: Do Not even bother!!! Just try other methods of soothing your child's crying. These drugs were a serious let down, and I regret that we ever tried them with him. They did not help anything, they only made things worse.

Multi-disciplinary team is evaluating Andy for Autism

We have completed all interviews and observations for a team to evaluate Andy for Autism. I first met with a psychologist on my own, and answered questions about Andy's behavior. I was also sent home with two questionnaires about Andy's behaviors. Examples of questions were: How does Andy react to people with beards? How does he react to loud noises? Does Andy seem very interested in spinning things? Does Andy respond to you when you call his name? What happens when a new person enters the room?

The psychologist then met with Andy for testing and observation. She wanted to see if Andy could follow instructions. Does he respond to his name? Can he put objects into a container? How does he respond to blowing bubbles? Can he find an object under a blanket? Will he comfort a baby doll or try to feed her?

Then on a separate visit he met with a speech language pathologist for a speech evaluation. She wanted to know, has Andy ever put two different syllables together? Does he ever stop babbling when someone else starts talking? How does he react when you leave the room? She could see that he doesn't respond to his name. She then told me she will be meeting with the neurologist and psychologist as part of the team to evaluate Andy for Autism.

We will know more in a couple of weeks. I don't have an opinion either way. The final outcome I am hoping for is just for Andy to be able to receive some additional services that will be beneficial to him.