Single Moms Raising Autistic Sons

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Sunday, May 23, 2010

Autism through the Lifespan...Part Two of Nine

In the second part of our series Autism through the Lifespan, we look at early childhood with an autism spectrum disorder.
Part two of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.
Most families with a child on the autism spectrum divide their lives in 2 segments – before and after the diagnosis.
Astrid Arroyo: Well, the first time of course, I was, crushed. But early on, when he first got his diagnosis I thought with early intervention, everything is gonna be ok, we’ll just work on it. The whole time, I’m thinking you know, by three or five years old, he’ll be typical child.
That’s Astrid Arroyo, whose son Kai has autism. He’s had hundreds of hours of one-on-one training and has made tremendous progress. It’s not apparent to the untrained eye.
Astrid Arroyo: Right now he’s not even potty-trained. I mean, he is but he’s not fully potty-trained. So he still wears pull-ups. And he’s 9 years old.
The first post-diagnosis step is applying for and getting Behavioral Health Rehabilitation Services or wraparound. The earlier a child gets them, the better their long-term outcome. For the most part, the tailored services are all paid for by medical assistance. It’s an intensely personal process – the specialists make house calls.
There are about 20 people that work with Kai. He has specialized physicians, language instructors, behavior and occupational therapists – even feeding specialists.
He never switched from baby foods to solids.
Astrid Arroyo: He only eats butterscotch pudding. And he drinks milk from a bottle and that’s it.
Heath, his younger brother, often helps feed him.
Astrid Arroyo: They’re only 16 months apart. They have the same friends. Heath has been able to teach him a lot of stuff. Going back to whenever they were little, Kai didn’t walk until he was about two years old but even before that he didn’t crawl and he learned to crawl because of Heath.
According to the Centers for Disease Control and Prevention, one out of 110 children now have an autism spectrum disorder.
Autism impacts thinking, behavior, language and ability to relate to others. The severity varies. It may have a co-existing condition – common ones are epilepsy or gastrointestinal illnesses or attention deficit hyperactivity disorder. There is no cause and there is no cure. Autism Spectrum Disorders present differently in everyone who has it.
Kai for example, understands most of what he hears but has the expressive language of a 3-year-old. He is social and affectionate. And he looks up to his little brother.
The rate of autism is steadily increasing. The numbers are high but many in the field say they aren’t even altogether accurate. Jana Iverson is a psychology professor at The University of Pittsburgh.
Jana Iverson: It varies a lot by economic and urban or rural environments. So children who are white and living in urban settings are more likely to receive a diagnosis earlier than minority children and children who are living in rural areas are likely to receive a diagnosis even later.
Astrid is originally from Puerto Rico. When she went to see doctors she was told not to worry because Kai’s speech problems were the result of her speaking Spanish at home. But she didn’t speak it at home. And even if she did, it wouldn’t have caused the sort of issues her son was having.
Astrid Arroyo: A lot of Spanish speaking families here are going through the same thing where their kids are late, you know they’re not talking at the right time and when they go to the pediatrician, the pediatrician will say it’s because you speak Spanish in the home just give it some time and come back. The problem with that is when you say it to the parents they come back when the kids are 5 or 6 so they missed out on early intervention.
Dr. Diego Chaves Gnecco says with dual languages, pediatricians often don’t diagnose. He’s working to fix that.
He runs Salud Para Ninos, a bilingual clinic for kids and works as a developmental behavioral pediatrician at Children’s Hospital of Pittsburgh. Nationally, Hispanics are less likely to be diagnosed with autism. There aren’t local statistics. But based on his work and the lack of outreach, he knows one thing.
Diego Chaves Gnecco: If you are Hispanic in the United States you are less likely to be diagnosed with autism. If you are Hispanic in Southwestern Pennsylvania, you are even less likely to be diagnosed with autism.
Part of it, he says is the “invisibility” of the Latino community. Elsewhere, there tend to be geographical ethnic enclaves. Here, the community is scattered. According to the census, in Allegheny County, there are 8,000 Latinos. About one third of them are children.
The doctor works in the outlying counties as well. Children in rural areas also tend to be under-diagnosed.

Diego Chaves Gnecco:
 We started going to Washington county. We drove for about thirty minutes from here, those families were underserved, they didn’t have a doctor, they have never seen a pediatrician for their kids.
Sometimes providers miss the signs. But other times parents don’t seek help because they don’t know how to or where to go.
Legal status can play a role. Astrid has been doing outreach within the Latino community.
Astrid Arroyo: We learned now, when we do trainings not to ask for a return address or even have a mailing list just to have them come and to have them listen. Because I think a lot of people that are immigrants if they have to register, if they have to provide a phone, an address, any information like that – they’re not going to come.
If a child doesn’t have legal status then they can’t qualify for medical assistance – the first step in obtaining wrap-around services.
Paying for treatment out of pocket can be costly.
Sometimes, she thinks of moving back to Puerto Rico.
Astrid Arroyo: I would love to. Just for the fact that’s its Puerto Rico, the weather is nice and my parents are there. I know for a fact that there are no services there.
Not having services in Puerto Rico is why Wendy Lopez moved here. Her 9-year-old son is severely autistic. Paying for services would have cost her upwards of 25,000 a year. She says she would have moved anywhere to provide him with what he needed. She picked Pittsburgh because she had family here and had researched the state’s services.
Wendy Lopez: I never thought I would be living somewhere else. I always thought I would live my whole life in Puerto Rico but having this situation made me realize how lucky I am of having this opportunity of living here, providing Victor with all of the resources he needs.
African-Americans are also under-diagnosed. Terry Scheffey of Family Behavioral Resources does outreach in the community. He says there’s about a two-year diagnosis gap.
Terry Scheffey: A lot of minority kids don’t see the same physician all the time so they don’t pick up on it. A lot are diagnosed with behavioral problems instead of autism. And there’s a huge gap in the medical system period.
Sometimes, parents get a diagnosis and don’t pursue treatment for their children.
Terry Scheffey: A lot of parents say, I got the information and it hurt so bad, I just waited. A lot of times what happens is when when the kids get to school age, the school tells them. Before your child is at school age you can pretty much say oh, he’ll grow out of it. When your child gets to school, you pretty much know when your child is falling behind – I think reality hits them.
He is starting a support group for African-American parents. In the Pittsburgh area, there are about a dozen of different types of support groups. Astrid belongs to several.
Astrid Arroyo: Everything that I know and everything that I have been able to get for my son has been through other parents who have shared their experience.
It helps, parents say, to be around others who are also going through similar experiences. And it also helps to talk about their feelings.
Patti McCloud’s son Jordan is 13. For her, one of the hardest things is watching other children hit milestones when her son hasn’t even hit the most basic.
Patti McCloud: I’m hoping that someday, I could have sworn he said a word yesterday. I could have sworn he was laying there and he said the word mom. And then I think, do I just want him to say the word.
Oftentimes they say it helps to talk about how hard something as simple as going to the grocery store can be.
Lynn Cass’s son Alex is 12.
That’s him.
Lynn Cass: That’s kind of unsettling, upsetting, sometimes people are really rude and will stare at him and you see them whispering and that bothers you.
Despite the upheaval that follows the initial diagnosis, many parents say they get used to it.
Astrid Arroyo.
Astrid Arroyo: For the first three years of Kai’s life I was miserable. I think that was my rock bottom. In fact, I think finding out he had autism was kind of like a wake-up call and it was just one of the things, I’m like, ok, this is the way, I cannot change it.
She has come to peace with her life and even grown to love it.
Astrid Arroyo: Right now I’m enjoying everything that’s going on right now, everything just fell into place, everything is perfect at school, we have therapy going, his relationship with his brother is just perfect and we can go out now, we can go out to restaurants and I just want to be as happy as I can right now and enjoy it. Because I know (laughs) once puberty comes…
Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.

Friday, May 21, 2010

The Gorgeous Blogger Award from Show Me Mama

This great award has been bestowed upon me by Show Me Mama and I greatly appreciate it! It is always so nice to know that other moms are so considerate and thoughtful as to give me an award for the blog. Show Me Mama is a great blog that is so well put together and so very informative. It is also full of links to all kinds of blogs and websites that are useful to each and every mom for any kind of reason. I have even borrowed some of the links and used them on my blog because they are so exciting and useful that I want to share them with all the other moms that read my blog. So thank you Show Me Mama for being such a great resource to me and the rest of the world! Please follow the link above to see all the great things that are in store for you and all the information that you can find there.

I would like to bestow this award upon my dear friend Melissa at I Don't Need Excuses because she is such an awesome friend and a great blogger. Also the following wonderful bloggers/friends who have been not only friends on facebook but true friends in real life and have helped me through some tough times:
Tara at
Lily at
Jen at
Alison at
Erin at
Tracy at

Friday, May 14, 2010

People Never Cease to Amaze Me!

Griffin and I are walking into Wal-Mart with Abby Griffin's service dog and the idiot at the door yelled at me and asked me if the dog was a service dog. I guess the bright blue vest with the vivid white patch that said "Service Dog" on it wasn't proof enough. So I yelled back at him and asked him if she had a vest on or not!

Then we go to the aisle where there is cereal and Griffin wants Frosted Flakes and I reminded him that he is not allowed to have sugar and that there is sugar in that cereal so he proceeds to have a meltdown. I noticed three females staring and I keep talking to Griffin telling him that he could have the "reduced sugar" Frosted Flakes but he just got worse. So one of the girls was making a face and watching Griffin and I glare at her with as evil a look as I could, which wasn't hard since I was exasperated anyhow, and looked her straight in the eye and said, " he's autistic"! She turned away and looked embarrassed and then I was glad!

Finally Griffin calmed down and we got the cereal that I told him he could get. So then the ignorance did not stop there.....I was buying some wine, and god knows that I deserved it, so the checkout woman asks me for my driver's license and I gladly give it to her. THEN......she asks me if I was driving tonight, it gets really good I say "Not after I get home" wondering why the hell she was asking. Then the idiot tells me that she thought that Abby was a seeing-eye dog and she was wondering how I could drive. LMAO!!!!!! (Laugh My Ass Off)!!!!

So we walk out the same door and the first idiot tells me to have a good evening and I was so over it that I didn't even glance at him. I cannot believe that in the time frame of about 15 minutes I met 3, count them, THREE idiots all in the same vicinity!!! So I go home sit on the couch and have my glass of wine that tasted like heaven considering what I had just gone through. I had kept my composure the entire time and by god I was going to do something for me!

Yesterday Griffin was having a meltdown in the grocery store as he was insisting on getting some candy. I calmly reminded him that it wasn't allowed and told him that if he was truly hungry that he would choose something else, even chips was okay at that point. But he just got worse with every passing passing second. Then he runs to the next aisle in meltdown mode and I told him that if he didn't come back that we were leaving. We were actually on the way to his speech therapy before all this. He then comes back but proceeds to walk swiftly to the ice cream cooler and once again I remind him that it is not an option to have sugar. He is in full meltdown mode at this point screaming his head off as it reverberates through the store. I had noticed a woman that was nearby through all this but I was so wrapped up in what he was doing I didn't notice that she was watching.

Finally, I take Griffin by the hand and calmly lead him out of the store mumbling under my breath. I let him get in the car screaming and walk around the back of the car as this woman who had been watching approaches me and tells me that my son is so lucky to have a mother like me and that he could easily be a victim of abuse but that I handled things so well and that she was so proud of me and then she gave me a big hug. I was near tears at this point and all I could say was that I was trying so hard because he wasn't being a good listener. She told me again what a great mother I was and I got in the car and tried to breathe.

It didn't hit me and it still hasn't because I don't feel like a great mother. I feel like if I was maybe my son wouldn't have so many meltdowns lately. Maybe I would have this magic up my sleeve that would make everything all better. I am so exhausted...........going to go sit down and veg out in front of the TV again and try to go to sleep soon. I just wish that there was some miracle that would help him cope with me and the world better. I don't wish the autism away because that is who he is but I sure wish that the behavioral issues were under control.

Monday, May 10, 2010

Remembering My Aunt Gail as She is Ready to Pass

My dearest aunt lies in bed in the hospice house..........this is really hard to write...........and as she is near her passing I remember her as the loving aunt who loves to watch and laugh with Griffin. She would always brag about him to my mom and dad whenever she would get to spend the day with us. Unfortunately I did not take a picture of them together as it seemed that I always forgot my camera but I have nothing but fond memories of her. If this doesn't seem like my best writing then it is because I can't seem to get past the tears to think clearly.

She told me one night on the phone what an awesome mom I was to Griffin, that it was amazing how patient I was with him all the time. I was so touched by her words as it meant a lot to me that she thought that and felt that way. I will never forget how that made me feel and I remember her smiling face and the sound of her laughter. We used to go to the YMCA together because she loved going into the pool to exercise and going into the sauna and whirlpool made her body feel better. She was bound to the wheelchair because she had no femur in her left leg so any chance we got we would go and enjoy ourselves. We loved going to Hot Dog World where they had the best hot dogs and Reuben sandwiches. On the weekends Griffin and I would go to her house and hang out. Griffin would hang out with his uncle Charlie and ride the scooter and I would sit outside with Aunt Gail and just talk.

We had a lot in common because we are both bipolar and both have had a lot of life's experiences. We both understood each other and how life throws you a lot of curves. We listened to each other and knew where each other were coming from without having to go into details. She was my best friend and I am going to miss the hell out of her. The images and sounds will forever stay in my mind and in my heart and I am glad that we were there for each other because it was an awesome friendship. Guess there will be a void in my life now but my heart if full of love for her and that will never go away.

I will write about Griffin in another post, it just doesn't seem appropriate right now.

Saturday, May 08, 2010

The Reluctant Baseball Player and The Manic Mom

Griffin played baseball today even though he was reluctant and seemed to not like being there most the time. I still encourage him to play and do something outside because if he had his way he would just play on the computer all day long and never go outside. The female coach was so good with him and kept him engaged the entire time (only 2 innings). She kept him busy playing high five games in the outfield and they let him bat the ball (his favorite part) first both times. I will continue to take him in hopes that he will either get to liking it but even if he still doesn't really care for it at least he is out of the house learning to do something other than the computer.

I had a bad manic episode the other night and literally stayed up all night long and finally called the on-call doctor at 5:00 a.m. and he asked me if I had any other psyche meds in the house and I remembered that I had some Attivan and he told me to take one and that I should insist on seeing my doctor that day. I took it and it calmed me down, I was able to get sleep and my doctor was booked solid until my appt. on the 17th. Now that I have the Attivan I will be able to sleep at night because the Melatonin is not doing the trick any longer. And I will not have a problem with mania because if taken as needed it will keep the mania away. I had been increasingly been becoming manic and didn't realize it, just thought that I was merely energetic so it slowly sneaked up on me. Regardless of what you have heard about mania being is not for everyone! It is miserable because it feels like my heart is about to beat out of my chest, my breathing is shallow, and eventually the sweat begins and it feels like sheer fear physically without the fear mentally. I have racing thoughts and cannot think straight, can't focus and can only lie still until I have to get up to do only what I have to call the doctor and beg for help!

Saturday, May 01, 2010

Special Needs Baseball (Mobility Concepts)

Griffin went to his first baseball game today and it was a mixed bag. He kept wanting to hit the ball instead of standing around waiting for the ball to be hit in the outfield..........can't blame him for that. Anyhow, the coaches and other volunteers/parents were super because they got him motivated (to a degree) and kept him in the game. I gave up trying to help him because he kept trying to have a meltdown so I sat in the bleachers and watched.

It is so great how they have things set up so that the kids can have success all the time and everyone is so helpful and motivated to getting the kids involve and engaged. I had forgotten my camera and that is why I only have him standing inside the apartment with his uniform on. Next week I will take pictures of him actually playing and a video too.

It was nice because it was in the morning so it wasn't so hot. Griffin already has a great tan going on and I sprayed very well with Bullfrog sunscreen. I realized why Griffin doesn't like going outside to play most of the time and my apartment manager pointed it out to me one evening as he was actually on the playground (she also has an autistic son). The weather was nice and cool and she said that that is why he won't go outside during the day and she is right because Griffin has a high tolerance to cool/cold weather and temperatures and has no tolerance for the heat. He loves his bath water to be freezing cold and will not get in if it is even warm.

So, from now on I am going to take him out early in the morning and/or in the evening before sunset and see if he will play. Unfortunately the other kids probably won't be out but at least he will be outside for awhile.