Our Son Alex

     Hello! My name is Angie. My husband, John, and I are both Deaf. We have 3 beautiful boys ages 15, 12, and 8. All of whom are also Deaf. Today I want to share with you our recent experience with Alex. Alex is our 8 year old son and he is not only deaf but also Autistic. Our biggest challenge is communication with Alex.

     On Thursday, November 3rd, 2011, I was talking to a good friend of mine on videophone. Then I received an urgent e-mail from Alex's teacher near the end of the school day. She said that another student had accidently hit Alex in the chin. The school nurse took a look at it and found it to be split open. She thought it would take one or 2 stitches. Did I want to send Alex on the bus or did I want to pick him up? He seemed fine. I told her to send Alex on the bus since it was near the end of the school day anyways and he seemed fine. When Alex arrived home, he had a Strawberry Shortcake band aid on his chin and an ice pack that the nurse had sent with him. Alex pointed to his chin and signed to me "hurt". I took a look at his chin and sure enough it was split open. I then decided to drive Alex to an urgent care center near our home. I had texted John informing him of what had happened to Alex. He was still at work. I then explained to Alex in American Sign Language that we were going to see the doctor. When we arrived at the urgent care center, I had to fill out the insurance paperwork for Alex. I also informed the staff that Alex is Deaf and Autistic. After a short period of waiting in the waiting room, we were then directed to go in  the examining room. The male nurse came in the room to take Alex's vitals and then left. John was later able to come and see Alex and I in the examining room. We all had been waiting in that room for well over an hour. Alex was becoming upset and kept signing "doctor come!" What 8 year old wants to sit in an examing room for over an hour? The male nurse did come by and explained to us that another patient had come in after Alex and needed immediate care. Finally, when the doctor did come in, he apologized for the long wait and explained he had to take care of another patient that needed immediate medical attention. He took a look at Alex's chin and said that he would need at least 2 stitches. The doctor then told us that we would need to go into the treatment room where he could do the procedure. As we all walked into the room, Alex was becoming more frightened. We explained to him that the doctor would "fix" his chin and sew it, that the doctor just wanted to help him get better. Alex had to lie down on the table as the doctor prepared. There was a nurse there to assist. Unfortunately, the doctor had to give Alex a shot right in his chin to numb it before he did the stitches. Poor Alex was screaming and signing "no, stop!" The nurse and doctor had to put Alex in a papoose wrap to prevent him from moving his body too much. John and I tried our best to explain that the doctor was trying to help him. John, the nurse and I had to hold Alex down while the doctor gave Alex the shot in his chin. Alex was sure a strong fighter and moved a lot! So, the doctor had to call in the male nurse to come hold Alex down, even though he had the papoose wrap. When he was able to finally give Alex the shot, he then had to start on the stitches. John and I once again explained that the doctor was going to "sew" his chin. Alex did not want this at all. We all had to help hold him down while the doctor did his job without injuring Alex or the the nurse who was holding his head. He was screaming the whole time and I just felt so bad for him. Then the doctor informed us that it would take 4 stitches to close up with split. When he was all done with the stitches, Alex was ready to bolt out of the room and just go home! The doctor told us that Alex would need to keep his chin dry and open. So no band aid or water on it for at least 5 days. The following week on Friday, November 11, 2011, John and I took Alex to see his pediatrician to have his stitches removed. Once again, Alex was scared because he didn't fully understand what was going to happen to him. Alex had to again be in a papoose wrap, John and two nurses had to hold him down.  I was signing to Alex the whole time the doctor was removing his stitches. I signed " I love you and you are doing a good job!" He watched me the whole time and this seemed to calm him down a bit. It helped that there was no shots involved in removing the stitches. Once this was all done, Alex was happy and got a sticker from the doctor.

     This is one of our biggest challenges with Alex's Autism, communication. We try to find ways to communicate with him. Our main method of communication right now is American Sign Language. We have used pictures that were made through the Boardmaker program but when you are in a situation in which you need to act fast, you can't always remember to bring pictures. Also, the Boardmaker program is expensive and we don't have access to it at home. John and I wonder what if a situation arises in the future when Alex is a teen or an adult, and needs immediate medical attention, how will the medical staff deal with his issue of being Deaf and Autistic? Will Alex need to be sedated to do a simple procedure, due to not understanding what is happening to him? It is one of the many challenges we face with our son. Even though Alex is Deaf and Autistc, we love him and have accepted him for who he is. We do our best to help him as he continues to grow.

Alex is Autistic, How Did We Find Out?

Alex in San Francisco

I am sure that after reading my first blog about our son Alex, you are wondering, how did you know that he is Autistic? Remember that Alex is also Deaf. Well, let me tell you, I didn't want to believe it at first.

It was my husband, John, who noticed that there was something different about Alex. At age 2, John would notice that Alex would be off playing by himself in another room. Some kids like to play by themselves but that is not what really made John notice that there was something different about Alex. It was what he was playing with. Now, most 2 year olds would be playing with age appropriate toys and their peers. Our son would play with videotapes and he would carry them with him when we would go out. People would ask us, "Is that his favorite movie?" Umm.. No, he just likes to carry the tapes. Not only would he carry the videotapes, he also likes to pull out the tape from the cassette itself and the videotape would be destroyed. You can imagine how many videotapes we have thrown out. He also loved to stack the videotapes or his legos real high.


Videotapes was not the only thing that fascinated Alex. John also noticed that Alex liked phone books. He would thumb through the phone books, carry them around with him and sometimes would rip the pages out one by one.




Alex was enrolled in the Early Intervention program at this age mainly because of his deafness. Looking back on his EI experience, I didn't feel that enough was done for Alex or said to us as parents to have us understand that there was something not right.The developmental therapist was not very good. When I would take him to his sessions, he was not interested in pretend play or social play. Alex was more interested in water play, playing in the sand or playing in a rice/bean bin where he would put his whole body in there and that made him feel good. The therapist never once mentioned anything to me about the possibility of Alex having autism or that it was not normal behavior. At that time, I didn't understand what was going on with my son, that he needed sensory stimulation.

Water play anyone?

Denver, Colorado

Our 3 awesome boys!

One of the toughest things for John and I was that Alex did not like to be touched and didn't like to hug. This would upset him and he would just start to cry and scream.Not being able to hug our child was heartbreaking for us as parents. By age 3, Alex was enrolled in the pre-school program for the Deaf/HOH(Hard of Hearing). During this time, there was almost no progress with his IEP (Individual Educational Plan) goals. After one year in the program, the staff there noticed that Alex was not signing much, had no social interaction with his peers, and there was no eye contact. We also noticed this at home.We were frustrated that there was no communication with our son, and we were frustrated for our son who couldn't tell us what he wanted. Alex would also do a lot of flapping of his hands, jumping and rock his body. This was not normal since both of us are Deaf and use American Sign Language on a daily basis to communicate with one another and Alex was not picking up the signs. His behavior was different as well. Alex's two older brothers, Joe and James, also use ASL to communicate. John and I wanted answers. So, we both decided to take him to Dr. Judy Kahn who works at the Center on Deafness. We wanted someone who was familiar with ASL and the Deaf culture as well. After Dr. Kahn observed Alex, she sent us a letter stating that Alex's behaviors are consistent with a diagnosis of autistic disorder, which John and I have suspected. She also stated that Alex's interests and interactions with others appear rather immature in quality.  He becomes fascinated with cause and effect activities which he will want to do for somewhat extended periods.  He also engages in some flapping and extended jumping movements. We were devastated to hear this news about our son. 


 Dr. Kahn told us that the most important thing to work on with Alex was COMMUNICATION first and not worry about the behaviors as long as he is not hurting himself or others. Now, when a hearing child is autistic and a parent calls out his or her name and the child does not respond, the parents assume their child is Deaf. Well, we knew our child was Deaf but we had to figure what was going on with Alex by his behaviors and lack of communication through ASL.

To this day, Alex is still obsessed with videotapes and phone books. He is now 8 years old and still does the same things he did at an earlier age. He has improved in a lot of areas over the past few years with alot of support. With acceptance, love and patience, we have helped Alex come a long way. I will write more in my next blog.

What behaviors should you be concerned with your baby or child? Does he/she have eye contact? Is there verbal communication for hearing children? Sometimes the child loses verbal communication at the age of 2 or 3. If the child is Deaf, is she/he picking up signs, understand the signs? Does your child avoid people? Does he/she prefer to play with different things rather than play with his/her peers or age appropriate toys? Does your child have sensory issues? Does he/she rock, flap hands? Does your child has appropriate socialization with his/her peers? Now, I am NOT an expert here and this story is based on our own personal experience but just giving out some ideas of possibility that your child may be autistic. It could be that your child has some other issue, disorder or your child is just fine. Of course if you suspect that there is something going on with your child, please consult with your pediatrician and discuss your concerns together.

What Are Those Square Things In My Freezer?!?!

Alex holding these mysterious colorful things!

It has been a while since I last wrote a blog about our son, Alex, who is deaf and autistic. So there has been some things that have happened in the last two years. So I decided to write something positive about our son. Alex was born deaf and diagnosed with autism at the age of 3. My husband, John, and I are both deaf, and so are other two older sons, Joe and James.

In September of this year, John and I found those square looking things, that Alex is holding in the picture above, in the freezer. For the life of us, we couldn't figure out what they were. They would disappear and reappear. Joe was away at college so he wouldn't have known what they were. We asked James, and he had no idea. That leaves Alex. Alex who is deaf and can only communicate his needs and wants by using sign language. We tried to ask but received no answer. This continued throughout the months of September and part of October.

When October rolled around, John and I had an IEP (Individualized Education Plan), meeting to attend at Alex's school. We had several people attend this meeting since this was Alex's first year at this new school. As we were talking about Alex and the issues he was having at school. It dawned on me to ask about those mysterious, little colorful, square things that we kept finding in the freezer!

I proceeded to ask his teacher if she knew what in the world those were? She laughed because she and the other staff were wondering where they disappeared to. She then explained that Alex takes one very cold cube and puts it under each of his armpits to help him calm down and relax. That those are reusable ice cubes (instead of using actual ice cubes and running out of those) that people normally would put in their drinks to keep cold.

Ahhhh, that made us laugh! What a great idea for Alex! Something as simple as reusable ice cubes can keep our son calm for a moment. We asked where we could buy these things? Alex's teacher said they come in a bag of 30 and that we could try either the Dollar Store or Bed, Bath and Beyond.

So, of course, John and I made a trip out to Bed, Bath and Beyond (we searched on the internet to make sure they had them in stock) and bought 3 bags of of reusable ice cubes for Alex! See pictures below. The cool part is they come in different colors and shapes too! Starting price is about $2.99 and up. Not bad at all to keep our son happy.

We hope you enjoyed this cute little story!

What does the State of Illinois Have to Offer My Child When He Turns 22?

As I said in my Facebook Page (https://www.facebook.com/pages/Deaf-and-Autism-Support-Group/269573709742960?ref=hl), I would be writing about what I learned of what the state of Illinois has to offer our son Alex. It pretty much comes down to nothing. First of all, Illinois is the worst state to have your special needs adult child in. As you are all aware, my son, Alex, is Deaf and Autistic.

 Last month in November, my friend Jeri and I went to visit Avenues to Independence work center. This is a wonderful place that employs special needs adults in Illinois. Jeri and I were researching as to how we could start something up on our own. I was researching more for Alex's future, and Jeri because she has been a Deaf/special needs teacher for 26 years. She was recently riffed.  We have learned that there are many services through school for children with special needs from the age of 3 until the age of 22. After the special need child turns 22 years old, it is up to the parents as to what the future plan will be. Schools are done with your child and then where do you go? What do you do? What are your choices? In the state of Illinois, after your child turns 22, they don't give you enough resources as to what to do, and don't have the best interest of your child. So, it is up to the parents like me to go find the answers! When Jeri and I were asking Kathy, an employee of Avenues to Independence, some questions, we were shocked at her answers. I asked how would I be able to place Alex in a group home in Illinois in the future. Here is what she said. In order for Alex to qualify for CILA (Community  Integrated Living Arrangement), either my husband or I would need to be 80 years old or at least nearly dying! You can imagine that Jeri's and my jaw dropped to the floor! This was unbelievable. Also, some group homes have a LONG waiting list and it will be YEARS before my son will be in a group home. Not only that, but the state of Illinois keeps cutting the budget for programs for people with special needs and changing the rules as to who has developmental or cognitive disabilities. Illinois is at the BOTTOM of the United States for providing what is needed for this population. This has convinced my husband and I that we definitely need to move out of state for Alex's well being in the future. Now, a group home is not the only choice for Alex. Jeri and I recently have learned of something called a "home based community service." When your child turns 18, you can sign up for this and your name is put in a lottery. If you are picked, then the state pays a certain amount of money every month for your child's needs to live at your home. This is not a bad option, but you are not guaranteed that you will be picked, and when you the parents die, then what? You will need to have a plan in place. Do you make arrangements with the siblings? What if the siblings have their own lives and don't want to take on the responsibility of taking care of someone with a disability? What if there are no siblings? Who can you trust? We also learned that 2-4 families can get creative and buy a condo/home together and have their disabled adult child live there, and hire the staff members on their own. Again, when all the parents die, then what? You will need someone you can trust to keep this household running safely for the rest of the child's life.

Now some of you may think of a "group home" as an "institution" which is not the case. I have visited a group home through Avenues to Independence organization and they are homes within the community which is a wonderful thing! It could be apartment buildings or single family homes. The residents live in these homes and during the daytime, they go to work, whether it be at the work center, a job site within the community or they maybe possibly have their own business set up just like the rest of the people in the workforce.

Since we are not impressed with what Illinois has to offer, John, my husband, and I have decided to move to a different state in the future. We are thinking of moving to Texas in a few years and have been told a lot of wonderful things about Texas School the Deaf. I even talked to one of the parents who also has a Deaf and Autistic son and he said he and his family has been getting a lot of support from the staff there. John and I are hoping to visit this school in a couple of years. Possibly move there after our 2 oldest kids graduate from high school.

As a parent to another parent, please think about your child's long term future. Yes, there are many, many services/programs here in the state for disabled children up to the age of 22. Please think about what will happen to your child after the age of 22. Do you have a plan in place? Will your child be in good hands? I know it is a very hard thing to do but we need to be realistic. Afterall, we all don't live forever. So please do what you can for your child to be prepared for their adult years.

Here are a couple of websites about what I have talked about that maybe you can use as a resource in Illinois...
http://www.dhs.state.il.us/page.aspx?

This website is information about this wonderful organization Avenues to Independence. They have been great to educate John, Jeri and I about how it all works!

http://www.avenuestoindependence.org

Also, here are some gift ideas for kids who are on the spectrum.

At the Autism Speaks website, they have a list of toys and games good for children on the spectrum.

http://www.autismspeaks.org/family-services/resource-library/toys-games

And finally Sensory Processing Disorders in children can make gift giving difficult. Here is a website with gift suggestions for children with Autism, Asperger’s, ADHD and Dyslexia. http://www.sensoryprocessing.info/toys/gift-
ideas.html

Here is a small trampoline that is another great gift for your child!

http://www.walmart.com/ip/Gold-s-Gym-Mini-Trampoline/17772144

Happy Holidays to everyone!