June 27 Post Four

Hannah and Ali have made a lot of financial sacrifices for their family, especially for Aaron. The Shakurs decide that it is best for Aaron to be admitted into the public school system. They have both agreed that they want him to receive the specialized help he needs, but he should get used to being able to adapt on his own and socialize with others his age. After doing some research on the area, they realize that their best choice of school district would be moving out of the city and into the suburbs surrounding Chicago. Kayla and Amir, yet again, have to make a sacrifice for their younger brother, leaving their school friends behind and having to start over--Even though this is not the worst thing for them. Over time, they were starting to become more ridiculed for having a brother with special needs by others in school who knew them. This was a way for the family to have a fresher start and hopefully better life for them all.

The new school district has a very successful program for students with special needs. They have learned much about it from touring the school as well as listening to reviews from families they have met over the last several years who have children with special needs as well. The Shakurs are very excited for the chance for Aaron to start receiving a normal education.

They move out of their home in the city and move out into the suburbs where they have found a small house to rent for $1500 a month. Ali transferred fire departments and is back to his full physical abilities. He works full time there making about $3,500 a month. With the money they receive from selling their house, they have a safe cushion for the time being. They now live about an hour from Ali’s family but they take the time to come visit on the weekends still so that Hannah and Ali can have time to themselves away from their children.

Moving is very disorienting for young children. Kayla and Amir were not prepared for moving all of their things and packing it away as well as helping Aaron to move. It was a lot of work and took a lot of energy from them. Being in the new house was not easy for either of them. For Aaron, being in the new house during the day he would throw uncontrollable tantrums and would act like what Ali had come to acknowledge as “Tasmanian devil spasms” since he would destroy everything in his path, such as: throwing, hitting, crushing, stomping, biting, screaming, jumping, etc. At night Aaron would often wake up screaming from night terrors and it would take an hour or so to soothe him so that he could sleep again. He would sometimes cry for Susan, his former therapist, since he had not seen her in several weeks. For the several years that she had worked with him, he had grown a very strong attachment to her familiarity.

Ali and Hannah were dealing with Aaron and his disoriented issues, but it began causing tension between Ali and Hannah. Ali would accuse Hannah of babying him and Hannah would accuse ALl that he is ignoring the children completely. Ali believes that since he works all day he should not have to come home and be a babysitter, and that is what Hannah feels like she is doing all the time. Ultimately, the stresses of moving have gotten to the Shakur’s for the moment.

Hannah and Ali spoke with the school about creating a new program for Aaron but until they can see his performance. Days pass and they cannot clearly assess what he will need to succeed in school. Aaron has full control of his motor functions and bodily functions now and has no issues identifying the things he needs or wants by pointing or short, broken phrases. He has learned some numbers from practicing how many of things to ask for that he wants, but cannot identify colors, shapes, or letters like other children his age. He still cannot count past 8.

Once beginning school, Kayla and Amir are not doing well. Their grades are slipping from what they were the previous year. The kid’s current school counselor is attributing their poor grades and socialization due to all the changes in their life from the move, from attending school with their younger brother, and their cultural background. Kayla and Amir refute the fact that they are related to Aaron to avoid being bullied again. They sometimes join in the ridicule so that others will not make fun of them.

Aaron does not settle in well with the school for the first few weeks. He does not like the new environment or the large number of people he is always around. He often will cry for his mother, Hannah, who has stayed at home with him for these last few years and is no longer available to him throughout the day. He has started to become aggressive to other students in the room and will scratch, growl/hiss, and hit at his fellow students. They have noticed that Aaron will react like this when he gets on the bus and until the first couple hours of school.

Questions:

1.  What are some services that could benefit Amir, Kayla, and Aaron could become involved in to help their transitions and how would they differ and affect the family as a whole?

2. What are beneficial ways that Ali and Hannah could deal with Aaron?  What is recommended for helping autistic children with low IQ levels and the ways he is acting?  

3.  What type(s) of care is normal/popular for autistic or disabled children in Middle Eastern culture?

Decision Point: Do Ali and Hannah seek help for their spiraling marriage and seek help in dealing with the issues of their children as well?  How could they do that cost effectively since they currently have a tight budget?

      

Citations:

Heller, P. K. (2012). Moving and Young Children. Retrieved June 25, 2014, from http://psychcentral.com/lib/moving-and-young-children/00012138

Intellectual Disability. (2014). Retrieved June 25, 2014, from http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Intellectual_disability

June 24 Post Three

Hannah has been more involved in her children’s lives and has been taking the antidepressant medicine for about a year now.  Hannah has shown positive improvements and sees a therapist once every two weeks.  Ali had a bad accident while firefighting.  Falling debris severely injured his leg and put him out of work for 2 months while it healed. During Ali’s recovery time, he was not able to work.  The Shakur’s were living solely from disability services.  The disability added up to approximately $300 a week for the two months that he was on disability.  However, the payments ended up taking about 30 days to kick in so for a month, money was extremely tight for the family.

Hannah and Ali have established that Friday nights are for them so that they can have alone time or time to recuperate from the children and stresses.  Lately, because of Ali’s injury and lack of money, they have been spending the time going up and down the street with Hannah pushing Ali’s wheelchair.  The doctor’s and therapist agreed that it would be incredibly important for recuperation time for the parents.  On these nights Ali’s parents come over and watch the children.  

Aaron is now three years old and still has a therapist coming to the house for thirty-five hours a week, adding an extra hour of therapy Monday-Friday.  Unfortunately, early intervention services end when at the child’s third birthday, so a new strategy for Aaron has been in the making.  The Shakur’s are setting higher goals for Aaron developmentally.  Aaron now makes requests for “drink” or “food;” Aaron uses gestures to communicate to his parents, and Aaron uses pictures the family has added to the household to assist him in learning.  Sadly, most of the time Aaron does not talk.  Considering Aaron’s IQ is 45, his potential with speech will never be great.  The therapist is worried since he has now shows signs of regression with his speech and lack of desire to use verbal language.  He does run around and engage in the interactive creative play that is encouraged by the family, which is a great sign that he has responded to the early intervention.  The next step for Aaron is preparing him for preschool/school type settings.  The Shakur’s reorganized the house to learn what objects are with fun little activities.  They want to end up getting him to the point where he is able to follow adult directions, learn to ask for things appropriately/mannerly, and complete activities under adult supervision (and eventually without adult supervision).  Aaron is showing some other normal signs of autism-sleeplessness.  Aaron is wide awake every morning around 2am, causing Hannah to have to be up with him as well.  She longs for the day where he can go to school a couple of hours a day with the other children so that she can have a break.  

Amir has been showing signs of rebellion at school and the Shakur’s are trying to deal with him.  They have began to give 7 year old Amir some chores, piano lessons, and Arabic lessons.  Kayla has started ballet, violin, and Arabic as well.  Ever since the two older siblings have gotten more structure, they have not acted out or felt left out because of all the extra attention Aaron receives.  

The Shakur’s had tried to speak Arabic constantly at the house, but it has not been going over well with toddler Aaron.  Their heritage is important to them, but they are seeking other alternatives (that’s why Amir and Kayla are taking Arabic now).  According to Lifespan Perspectives on the Family and Disability, “special care needs to be taken to ensure meaningful participation of culturally and linguistically diverse families in the early intervention program” (Berry, 2009).   Kayla and Amir are doing well with two languages; however, Aaron’s speech development is slow due to trying to distinguish the two languages at home because they are so different.  Ali and Hannah are trying to expose him slower to Arabic and were advised by the therapist to not overwhelm the child but to also decide if they want to bring in an Arabic therapist.

It is clear that Ali and Hannah have always wanted the best for their children, but because of their lower middle socioeconomic status, they do not have the means to have the best for them.  The therapist is also recommending family bonding activities now that Ali is healed, and Aaron is getting close to five.

1. Would Ali and Hannah have enough money to put Aaron in private school or would he be better suited for public school?  What would be the cost if private school was the best option or what other options do they have for Aaron?

2. The Shakurs want to raise awareness in the community about Autism.  In a big city such as Chicago, kinds of organizations exist which might provide an outlet for the family’s desire? Are there typically parent advocacy groups in places like Chicago, Richmond, Fairfax/Washington, or Norfolk/Virginia Beach?

3.  What kind of community supports would be an option for the Shakur’s with three children and one with greater needs?

Decision Point:

The older siblings are at a point to where they know their little brother is very different from other children.  How do Amir, Kayla, Ali, and Hannah handling the bullying and taunting (at school and in the neighborhood) regarding their little brother Aaron?

June 20 Post Two

Aaron Shakur is now 24 months old. He has been receiving early intervention treatment for about six months now. His parents decided to go with Applied Behavior Analysis Home therapy, because they heard that that type of therapy achieved the greatest results. Aaron’s therapist’s name is Susan Riley. She is a therapist in training. Hannah and Ali chose to have a therapist in training because it would be way more expensive to have a full time professional ABA therapist. This type of therapy is very costly for them, but Hannah feels that it will be the most effective, and she wants what is best for her little boy. ABA home therapy can range from about $5,000 to $20,000 a year for therapists in training, while a professional ABA therapy team can be about $50,000 and it is not covered by insurance. For their specific therapy choice, it cost about $10,000 a year. 

So far ABA seems to be working out for Aaron. Susan evaluated the skills and difficulties Aaron had when first meeting with him. She noticed that he has very low social skills, so that is one thing that she really feels that she would like to work on with him. He wouldn’t respond to familiar voices before, and now after six months of ABA, he is at least responding to his name. She is trying to get Aaron to work on more than one word phrases and she eventually wants him to be asking for things and making requests. These are goals that she has set for him and has shared with the family. She expects the family to be working on these things with Aaron while she is not there as well.

Hannah and Ali were told that the effects of early intervention treatment could be very helpful, and could potentially alter Aaron’s brain so that the effects of Autism would be significantly less noticeable than if he were to receive treatment while he’s older. Since the child’s brain is still developing at a young age, early intervention has the potential to change the way it is developing. Susan feels that she wants to work on Aaron’s play, social skills and speech and language skills.

            Not only can Early Intervention be helpful for Aaron, it can also be helpful for the family. In this case it has been extremely helpful to the parents. Since figuring out that Aaron has been diagnosed with Autism so early, it has helped them to learn about the disorder and will potentially give them more time to handle it as well as accept it. They also have time to understand that Aaron’s future may take a different path than what they originally expected or wanted for him.

            Unfortunately not everyone has benefitted from Aaron’s treatment. Kayla has been acting out a lot more. Since she is not receiving as much attention from her parents as Aaron is, she throws a lot of temper tantrums and has started to retaliate. Also, it is hard for Kayla because her older brother Amir has just started kindergarten. She feels alone and is crying out for more attention from her parents. Ali’s parents have tried to show Kayla love and support but it is still hard for her because she wants it from her parents.

With Amir being in kindergarten now, the family has a lot on their hands. Thankfully Ali’s parents have been helping out a lot with watching Kayla while Aaron is doing treatment. Treatment is about thirty hours a week, so it has taken up a lot of Hannah’s time. Ali has still been working at the fire department and he is still contemplating getting another job in order to make more money for the family to live comfortably. Hannah’s mental state is also something that she is working on. She is taking an anti depressant, and with Aaron showing improvement, she seems to be doing better herself.

Questions:

1.     How do children with Autism’s siblings handle their sibling having a disorder that needs so much time and attention?

2.     What is the success rate for ABA therapy? What types of therapies are considered ABA?

3.     What other types of early intervention treatments could the Shakur’s chosen for Aaron? How successful have they been proven?

Decision Point: Do Hannah and Ali act to stop Kayla from the path she is going down? If so, what do they do?

June 17 Post One

Aaron Shakur is an eighteen month-old boy. He lives in a town house in Chicago with his mother, Hannah, father, Ali & two older siblings, Kayla & Amir. Kayla is two and a half while Amir just turned four. Hannah and Ali got married right after Hannah graduated high school at age eighteen, and when she was pregnant with their first-born son, Amir. Ali was twenty-two. Hannah and Ali both graduated high school, but never went on to further their education. The family is Arabic with Hannah’s family living in the Middle East and Ali’s parents living in Chicago as well. Ali’s family has been very helpful with helping to take care of the children if need be so that Ali and Hannah can work.

As a young mother with three children, Hannah thought it would be best to go straight into the workforce.  After a year of breastfeeding each of her children, the family is now in need of formula for Aaron, which is not cheap. Both of Aaron’s parents are hard working employees. His mother is in housekeeping for a hotel near their home. She works full time, sometimes she works nights in order to watch the children during the day. His father is a well-respected firefighter for the city, who has more consistent hours than Hannah. Their income is within the lower middle range, at about $30,000 per year.

Aaron has mastered crawling, and walking. He is getting into plenty of things and Hannah and Ali have to watch him and his sister Kayla very carefully. Kayla tends to be a lot more social and outgoing than Aaron, even their grandparents commented on how Aaron plays by himself. Kayla tries to play with Aaron, but Aaron doesn’t respond the way she wants him to.

Lately, Hannah has been noticing some odd things about Aaron. She noticed that when she feeds Aaron, he doesn’t look at her and he doesn’t reach out to be picked up. He also doesn’t smile much, respond to familiar voices or use gestures. He prefers to play alone as well. Hannah realizes that these behaviors are much different than those of her previous children, and gets concerned. She mentions Aaron’s behavior to his pediatrician. The pediatrician doesn’t seem to think much of it during her fifteen-minute appointment with Aaron and Hannah. She says to just wait and see if things get better. Hannah doesn’t feel comfortable with that and she believes that there is something seriously wrong with Aaron. Hannah seeks a second opinion after researching online Aaron’s symptoms. She reads that at his age, he should be speaking, making gestures, responding to his name and making other facial expressions. Since Aaron is lacking in all of these areas, and she has mothered two other children, Hannah knows something isn’t right.

Another pediatrician sees Aaron and they determine that he is Autistic. Hannah and Ali are devastated and do not know what to do. They are not very wealthy people at all, and do not have much money to spend on expensive therapies and treatments. With Amir getting ready to start kindergarten, and still dealing with a two and a half year old, they are torn between starting early intervention for Aaron and waiting until he is a little older, and they are a little more stable. Hannah has dealt with depression issues in the past, and Ali is now worried that she will fall back into her old ways.

Questions:

1.     What are the benefits of early intervention treatment for ASD? What resources are available in communities for such intervention?

2.     How can Hannah be proactive with her depressive symptoms? What risks are associated with maternal mental illness?

3.     Write a developmentally appropriate dialogue of how the parents might talk with their older children about Aaron’s autism.

4.     What is the prevalence of Autism in Arabic-speaking countries? Is the prevalence more or less than in the U.S.? Hypothesize as to the differences.

DECISION POINT: Do the Shakurs start Early Intervention treatment of Autism for Aaron? Why or why not?