Our journey through autism

Posts tagged ‘treatment’

Autism and illness

Bilal is down with a flu like illness, called rhino-something virus, its like the flu in that he has a fever but no other cold symptoms such as stuffy or runny nose, cough and the like. His little brother Sulayman got it first but it was more like the flu with him, with Sulayman it lasted 5 days of fever (39 degrees C/103 degrees F)  on and off, he had the runny/stuffy nose, he vomited 3 times, and had diarrhea, he also had slight swelling from the injection site of the chicken pox vaccine. It was the worst illness he’s had since he was born and lasting 5 days was brutal, he barely ate anything other than his milk bottle and sometimes he would take Ritz crackers. The fever would go down with Tylenol but as soon as the 4 hours were over it would climb back up, and I didn’t feel that it went completely down, so the pediatrician said to use Advil, and within half an hour his fever went down and stayed down, and it works for 8 hours instead of the 4. So after the 5 days Sulayman was all better and all his symptoms were going away and we thought we’d start a new week, but come early Monday night Bilal wakes up in the middle of the night and vomits, and he wakes up in the morning with the start of a fever, and it goes on but with Bilal its difficult. Alhamdullah he didn’t get any other symptoms, other than vomiting a couple of times but as it has been since he was born its impossible to give him any type of medicine or vitamin and we’ve always had to put in milk or juice but with him being so ill he doesn’t even feel like drinking his juice, and the Advil made the juice really gross I don’t blame him, so he couldn’t take the medicine, we even held him down and forced him to take it, the strength he suddenly gets, tensing up his whole body, clamping his mouth shut, and when we forced that open and squeezed in the Advil he somehow clamped his throat shut and the medicine would just bubble back up, we tried this twice but it was really pointless. So I asked his doctor for a suppository, they only make Tylenol and not Advil in that form and that’s what we had to do. He also tenses up and screams but its easier to get it in and it stays in and it helps a little, we did a lot of cold compresses and he did drink a lot of cold water. As today is day 5 I think he’s finally getting better insha Allah but he’s lost so much weight and seems so weak and listless. He barely eats or drinks anything other than water and it will take awhile I’m sure for his appetite to return and for him to fatten up a bit again.  He’s missed a week of school and his speech and OT therapies as well. I really hope this is the end of any winter illnesses insha Allah we surely have gotten our share of it this year. Towards the end of Sulayman’s week of illness I got a fever for a couple of days and a bit of a sore throat, but my husband got it the worst, he got Strep throat, fever, and some kind of eye virus that we’re worried could spread as its really contagi0us.

Positive thoughts and prayers would be greatly appreciated.

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So what is Autism?

You’d think this would be the very first post on this blog, but I wanted to write it in the order in which we went through it, following our journey from start till today. I’ll be linking to several websites for more accurate description of this disorder.

What is autism?

In short autism is a neurological disorder in which a child has difficulty communicating and has social deficiencies, it is a spectrum disorder meaning there are so many levels to the disorder, no 2 children are alike (even twins), symptoms vary, severity of disability varies also the age in which it is first detected varies but its usually between 12 months to 3 years.

It is estimated that autism is prevalent in 1 out of every 110 children, with boys four times more likely than girls to have it. The rate of detection and diagnosis is increasing steadily over the years, this may be due to a better awareness of the disorder and sooner diagnosis than previous years.

What causes autism?

This is the question everyone wished there was an answer to, until today they dont have an accurate answer to it. There are so many factors that may increase the risk and these include:

  • The use of fertility drugs
  • The use of antidepressents during pregnancy
  • Not taking folic acid or prenatal vitamins during pregnancy
  • Gestational hypertension
  • Obese mothers
  • Toxins during pregnancy or early infancy
  • The use of Pitocin to induce labor
  • Pollution
  • Vaccines
  • Frequent infections or use of antibiotics in early childhood
  • Early childhood trauma
  • Genetics
As you can see it could be just about anything, a lot of these were just maybes and in the research phases, and they just increase the risk, some mothers have these symptoms during pregnancy but their children dont have autism while some mothers dont have any of these symptoms and their children have autism. So its still unknown what it could be. The vaccine controversy has been debunked by medical science and the doctor that first published a report saying it was the cause of autism has since lost his license. The MMR (mumps, measels and rubella) vaccine which some parents say caused their children’s autism has been proven to be safe, in my case I didnt give it to Bilal in fear of autism and chose to postpone it to after the age of 3 the autism risk years, but he was diagnosed with autism anyways and I went ahead and gave it to him. I’m still skeptical and worried and will postpone giving it to my other son, just in case.
How is it diagnosed?
You must know and be on the lookout for symptoms and early warning signs. These include limited or no eye contact, limited communication, speech delay, a strict adherence to routine, repetitive behavior, inability to correctly play with toys, toe walking, difficult behavior including outbursts and tantrums. One must also follow closely with a their child’s pediatrician and if any thing is suspected the child should see a developmental pediatrician or child psychologist. They will then observe the child and ask questions about his early development and when milestones were reached and mark it all in different scoring sheets.
How do you treat it?
As they still dont know the exact cause of autism they cant create a cure, there is no medicine, shot or surgery that will wipeout autism, but there are lots of treatments, and the earlier they are started the better the outcome. Some parents even say their child outgrew the symptoms and have lost the diagnosis, but those are rare, the child will always have something, some kind of behavior that fits the spectrum.
  • Therapy: there are so many therapy options availalbe, speech, occupational, physical, behavirol, music, art, water, horse back riding. The one or several you choose will have to be researched and seen if its the right fit for your child, is it covered by insurance, is it worth the time and cost. Its a difficult process choosing the best options. We have Bilal in Speech and Occupational therapy both at school and in private, for a total of 2 hours a week each.
  • Diets: Some parents swear that feeding their child certain diets eliminate a lot of symptoms of autism. The child usually has some kind of food allergy and eliminating that food from their diets improves their behavior, these diets are difficult to follow and usually expensive. The most common autism diet is the GFCF (Glueten free, casein free). We did a blood test and found that Bilal did not have any food allergies and therefore decided not to change his picky diet in anyway other than trying to improve it. Also the Marcus Autism Center doesnt support special diets as a treatment of autism.
  • Supplements: Some parents also swear that giving their child certain vitamins or supplements eliminate symptoms. Some use B vitamins or a mix of other vitamins and minerals. These supplements are beneficial when following a limited diet as eGFCF to ensure the child has a well balance diet.
  • Medication: some parents turn to medication to control their child’s outburts or difficult behavior.
This is just a brief and limited explanation of autism, I suggest you search online, local libraries, doctors and therapists for a more detailed understanding, the resources out there are numerous, but just be on the lookout for those who want to take advantage of a parent’s need to help their child in any way and make up claims of miracle cures. Sadly those are numerous as well. Be careful.
When you do get the diagnosis you will feel a mix of emotions, maybe relief to finally have answers to your child’s odd behaviors, fear, anger, sadness and all that is normal, it is okay to grieve for the child you wished you had, for the future you imagined he’d have. Doctors will suggest you find local support groups to attend, to get help and advice from other parents who’ve been there. Autism is not a death sentence, with therapy these children can grow up to live comfortable and full lives, With just 2-3 months of therapy since Bilal started receiving services we’ve already seen improvements. I’m optimistic for his future insha Allah.
Please check out these links:
All the best of luck.

Hearing the word “Autism”

After I gave birth in the US my husband needed to travel to our home country of Egypt for some paperwork, with my arms full with a new baby and excess stress with dealing with Bilal’s difficult behavior and potty accidents  my husband decided to take him with him for those 2 weeks. It was a relief I could concentrate on recuperating and getting the hang of things and dealing with a new-born and the sleepless nights and such.

In Egypt my husband took an appointment with one of the best speech pathologist in the country and after an initial interview and observation appointment he said that Bilal was normal and that it was our shortcomings as parents for his speech delay, we didn’t talk with him enough and that if we started talking with him and describing out loud his every move he’ll pick up on speech and start talking. He also mentioned not believing in autism and that it was something parents like to label their children with as an excuse for their lack of effort or attention. I don’t know much else about the visit as I wasnt there but I was relieved that the doctor thought him normal but really pissed off for him saying my son’s lack of speech till the age of 3 was my fault, he didn’t even meet me and I’ve tried it all, I tried reading him books, stories, crafts, repeating after him, I’ve done it all and none of it worked.

By the end of the month we had moved back to Saudi Arabia and settled down and started looking for a daycare for him to attend so that he could communicate and play with other children. I had read about a daycare called Little Scholars run by a Saudi women who had lived in the US most of her life and upon moving back to Riyadh and not finding any adequate childcare for her son started this preschool, the teachers were all Westerners, English speakers, her curriculum was very similar to the Bright Horizons methods and I was happy I found something good. Bilal’s teacher was a South African, bless her she was very dedicated to her job and gave Bilal a lot of one on one attention even though we didn’t tell them he had a developmental delay and she didn’t have any special education training but Bilal came home from school happy, humming something or another, he was excited to go in the morning, and his vocabulary was slowly improving with time.

We also started looking for speech therapy programs in Riyadh. The only hospital that had speech therapy was Sulaiman Al Habib Hospital a well-known respectable hospital in the country, when I called for an appointment they told me there was a Saudi, Jordanian or Lebanese, I chose the Lebanese therapist and set a date. We go in for our initial evaluation, she asked us his speech history, number of words, medical history, pregnancy details, observed him for a while and said that he did have a speech issue and we would start the next week for twice a week hour-long sessions. I attended these sessions with him sitting in a chair on the side observing her technique. They played with doll house sets, blocks, cars, play food, utensils, stacking cups, and flash cards, after the first session, the therapist said that she suspects he has autistic features with his constant fidgeting and limited eye contact it would explain his speech delay, she said that if he doesnt make any progress with her than she would refer us to a child psychologist. I remember my heart pacing after I heard that word “autism” didn’t want to believe it and was still playing the denial card in my head pretty strongly, she must be mistaken and I kept repeating all my excuses in my head over and over, only child, non social life, etc… When we got home told my husband about it and he said let’s get an appointment with the child psychologist right away and not wait and see, so we call for an appointment, with the doctor at Kingdom Hospital they had just opened his department and transferred him from Jeddah, we meet him and again the long list of questions regarding my pregnancy, early childhood, medical history etc all the while observing him as we spoke, we stayed there for almost 2 hours. This doctor said that yes he had mild autism or normal with autistic features, he said that the most important thing was that we should surround him with typical peers at least 3 times a week, even if we travel on vacation, he said that we should spend at least 3 hours a day with him with one on one play, trying to initiate communication, give and take, sharing and such like behavior. We told him we were doing speech therapy and he said he didn’t believe it would come to any good and we should explore other methods of communication, like sign language, flash cards or computer assisted speech, I told him that I know that autism’s first treatment was speech therapy and he said you can do it if you want but we shouldnt expect much results from it. He didn’t have other options to share as autism was still something so new in the Kingdom, that there weren’t any facilities in the country to address this issue and if there were they would only be accepting Saudi nationals and not foreigners like us.

I was devastated, autism, my son has autism, how? what are we gonna do? we need to leave the country and move to the US we need answers, therapies, some kind of treatment plan, I was overwhelmed, in shock, depressed I felt it all. I cried a lot and I turned to the Internet, trying to find answers, decided that no it can’t be autism it must be this lesser thing called Pervasive Developmental Disorder-Not Otherwise Specified(PDD-NOS) I made an account on the Autism Support Network (ASN) and spent the whole next day online reading article after article trying to figure out what to do, how to reverse this. The doctor telling us that we needed to spend 3 hours a day playing with him was very difficult as I didn’t know how to play with him, that I’ve tried that, that I was also busy with a newborn and sleep deprived and short-tempered, I needed someone else a professional to play with him and treat him, not me.

For the next 4 months he went to preschool everyday for 6 hours, we tried to keep a twice weekly appointment with speech therapy but that wasnt working, Sulaiman Al Habib was the only hospital in Riyadh that had a speech therapy program and they were overbooked they didn’t have set designated appointments it was a first call first serve system and I was always finding it difficult to get a spot, we ended up going once a week at most sometimes we even skipped a week. I doubt the therapy helped him much but it did give him an idea with what to expect when we went to the US and started our journey there.

His speech did improve over those 4 months, instead of “eh, eh” when he wanted something he would tell us to come, his pronunciation improved slightly, instead of calling juice “oooh” it was now “oooce” small things like that and I was partly relieved saying that these Arab doctors were all mistaken he had these symptoms because of his situation and not because he had autism, and that when we got to the US we would get better answers and better speech therapy and that everything will be alright.

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