Ashton’s Story

For the past 18 months there have been many nights that we wondered if we will ever see a light at the end of this tunnel. We used to ask “why us”, why did this happen to our little child, what did we do to deserve this! Then we realized how selfish, these things happen and why not us. It is sad but someone’s child has to have special needs. And now after a year and a half of full time therapy we are finally getting close to see the light. Our story began over a year and half ago when our 15 month old son started to loose his language. At nine months he was able to say “I love you”, he would respond with a smile and look into your eyes when you talked to him. He would smile and say “cheese” when he saw a camera. He was saying “mommy“ and “daddy”. He was clearly more advanced than most children his age. While at our Pediatrician’s office for a routine check at 15 months, he received a Flu shot in two split doses along with five routine vaccinations at that time. Immediately the next week we noticed a change in his demeanor, his smile was fading and he was forgetting words. We had no idea that this was a red flag. We discussed these minimal changes with our Pediatrician and she suggested that it is a temporary set back and unrelated to the shots. She suggested that we were over reacting and that we should give him the second dose of the Flu shot. Not knowing any better, we agreed and he received a second dose of the Flu vaccine. He had immediate GI symptoms, diarrhea and fever and he regressed and regressed. All of the sudden his smile was gone, he was no longer turning his head when we called out his name. He lost the shine in his eyes, and became unresponsive to our voices. He was no longer speaking. We thought that perhaps he had a hearing deficit. We took him to an ENT and they did a verity of tests which were all inconclusive. We went back to our Pediatrician, her response was it is normal to loose some words and gain new ones. So, she asked us to wait a few months and his beautiful smile continued to be lost and instead we would see him staring in space for long periods of time almost non-responsive to any verbal stimuli. This time we asked to see a specialist and that took another 2 months. The Neurologist was very nice and spent a lot of time with us. He will always be in our prayers and we will never forget his kindness. He couldn’t diagnose him due to his young age, but he thought that there is definitely something wrong perhaps autism or PPD NOS and recommended speech and ABA therapy. When we asked him where could we get ABA therapy, he had no idea! This even though he is a Developmental Neurologist! Then we called our Pediatrician to get leads on ABA therapy, she asked us what ABA was and told us that we misunderstood the Neurologist, and he probably meant play therapy. Well, when we realized we could not rely on her for resources we started to search online reading constantly to find out information. We read about Autism and PPD NOS and various treatments available. We did food sensitivity testing and put him on a rotation diet. Boy that was difficult. We eliminated many foods from his diet and did this for a few months with no improvement in his symptoms. After this we decide to put him on a Gluten Free/Casein Free (GF/CF) diet. We noticed that he had loose stools multiple times a day and did allergy testing and noticed that our child was allergic to Casin (IgE testing and not Food Sensitivity). To this date we have him on a GF/CF diet and feel that this has been useful. In the mean time we started to search for ABA therapists in the area. We found a few places that provided ABA in DFW area. Most of them were full and had a wait list of 3 to 6 months. We didn’t have another 6 months to loose. And that is when we found the Brent Woodall Foundation. Due to the fact that our son was so young they saw us immediately and evaluated him. They suggested a full time therapy schedule, and gave us a program to follow at home. He was 22 months when he started therapy and at that time he was non verbal and would not point or even wave goodbye. He would not respond to his name. It was really hard to get him in the routine, but we managed to do that. His life started to revolve around his programs and learning new words. After 4 months of therapy, he had 60 words and he could label almost everything he could see. This is the point when our lives changed. We put our child with special needs as the most important thing in our lives. We started not only with BWF but also by doing ABA ourselves at home, hours and hours. We worked with him all the time, and it was very, very difficult and often slow and disappointing. Sometimes you would have to repeat a routine multiple times for him to respond. We stopped going out with friends, we no longer had any vacations, and all of our resources got directed to improve our little one who we felt was lost. We also tried biomedical treatments, but stopped it after a few months. That is not so say it does not work, it didn’t work for us. We did testing for this and that and collected stool and urine samples. But ultimately we felt like the whole thing was aimed at draining us financially and although we did a whole bunch of vitamins, shots and treatments we did not see enough data in our search that we could feel safe and comfortable in pursing these therapies. This was a very difficult decision. Surely we did not want to do anything that would cause regression in our child. After much prayer, online research and thought we decided to end biomedical treatments for a few months, and to this we have not gone back! We do realize that some families saw improvement with this, but not for us. With tiny baby steps he improved daily, sometime regressing and sometimes progressing. Our focus was mainly ABA, speech and some OT. Eventually he got his personality back and started to laugh and enjoy life again. He still lacks good eye contact, but does respond to his name, forms spontaneous speech, and learns new things easily. It was almost as if he blocked everything for 6 months and now he was back with us and was absorbing the information presented to him. Now after 15 months of full time ABA and speech, he is talking and attending a pre school with typically developed children. We can certify that he was one of the hardest working 2 year olds in the country. We literally spend 30-35 hours/week of formal ABA therapy (a combination of BWF giving us help and our own work with him), this with additional speech therapy and OT. He still has a long way to go, but we feel that the worse has passed. We are outlining a few pointers and suggestions that we are hoping might be helpful to other parents: Seek help as soon as you see something is wrong. DO NOT let any one tell you this is normal and some kids are late talkers. Get help, assume the worse and hope for the best. They told us that the speech delay was because of us introducing him to more than one language and he was confused. This is bogus! Don’t listen to this!!! Try a GF/CF diet at least for a couple of months – it might help you. If you have another child that is younger, consider the alternative immunization schedule: Pass on the Flu shot if it contains Mercury. We are well familiar with the data that supposedly shows no link, but since they have the Mercury free version why not ask for that. ABA, ABA, ABA… I can not emphasize how important ABA therapy is. It makes sense and IT WORKS. You also have to do ABA at home. We realize that it is hard, but you have to make the time to do ABA at home. Don’t just depend on the formal ABA program, learn ABA and start doing it at home. You HAVE to play an active role. Get videos that teach words and action words and while in the car, and when trying to put your child to sleep use this time to have your child watch these videos. Every moment of the day is an opportunity for learning and developing. Start speech therapy, see if you quality for a state subsidized program (we took advantage of the ECI program in our county). If you have other children, take advantage of that, make them the therapists. If you get your little one imitating his/her siblings, then you have full time therapists around the clock. As your child improves continue to try to incorporate the ABA programs in your child’s daily routine. We used to review language cards at dinner, or play “I spy” while we lay the cards around on the floor for him to find them. Be careful of scams and scammers. Try the biomedical approach, even though it did not work for us, it may help you. Again be careful of quacks and scams, and don’t get in too much of a financial drain!! Of all the biomedical treatments the one where we saw some minimal benefit was adding Omega 3 Fish oils to his diet. There is little to no harm try this for a few weeks in your child to see if there is any benefit. Use music to calm your child. We often would play classical music at night to calm our child. Use music to teach your child new words. After our child became non-verbal, it took forever for him to say new words and forever for him to re-learn to say “mommy”. This was finally done by using a nursery rhymes and songs and modifying the words from the rhyme to teach him this word (if you are happy and you know it SAY MOMMY.. etc…! We used Utube videos to teach our child ABC’s, 1,2,3’s and various children’s songs. We made our child watch these videos over and over again while in our laps. Pray not only for your child, but also for our child and all children and families going thorough this process. Finally love your spouse, hang in there and remember that God does not test anyone beyond their capacity. By going through this crisis we have learned to see life differently and become more spiritually minded. We wish to thank the therapist at the Brent Woodall Foundation from the bottom of our hearts. God knows that they are angles!!! God bless them! Tracey is an exemplary human being. She has dedicated her life to these little ones. We could not have done this without their support and help. Sincerely, Parents of Ashton