Let's all share our stories from the very very beginning to now.
Jake was conceived via IVF #1. We have unexplained infertility. In my first trimester I began having moderate bleeding which continued off and on for many weeks. Then at the end of my pregnancy I was monitored because he was so little. He was born at 38 1/2 weeks via vacuum assited vaginal delivery. He weighed 6#1.8oz. He was a champion breastfeeder from the minute he was born. He creeped right up my chest and latched on all by himself the MINUTE he was born and nursed for 25 mins!
Once we got him home he screamed his head off for the first two nights home. Nothing we did made a difference except breastfeeding. He loved to suck! He hardly slept at all. At 3 weeks he began his bout of colic and would scream from 5:15 pm to midnight every night. The only things that would calm him was to have a marathon breastfeeding session or to swing on my parents' porch swing and stare at the leaves rustling on the trees or the slats in the roof of the deck. I found this unusual but hey, whatever worked!!
Right away I noticed he was gross motor delayed from the beginning and he was a little hypotonic. This pattern continues to this day. It is nothing severe but is mildly so.
He was 6 mos old the first time I outwardly expressed my concerns of autism. He just couldn't be engaged like other babies and he simply did not sleep. I couldn't make him laugh except to tickle him. He just didn't seem all that interested in me--now my breasts, that was a different story! I remember when he was 6 mos old I was so concerned that I went to a friend who had run a childcare for 22 years and asked her if she thought he had autism. Of course, she responded no! So, I put it out of my mind and began blaming myself for his difference. I had done some of that before but this is when the self-blaming really started. My dh lived in a different state because he was in school and I had my parents' help but primarily I was the only person with him. I worked FT until he was 4 mos and then PT after that. My parents kept him while I worked. I completely blamed myself that he was delayed, crabby, didn't sleep well. And, honestly, my family sort-of went along with it saying that my stress was "rubbing off on him."
At about 10 mos I remember asking dh when the "lights were going to flick on like Kyndal. (my niece)" He thought I was overreacting. Then at a year I commented to my mil that Jake needed some "social skills" because when we would go on walks around the neighborhood he would cry if a neighbor stopped to say hello to him. I was serious. She thought I was crazy. By a year I was concerned that he was not clapping, waving, or pointing. I had been following the Denver Developmental Screening Test since birth and trying to keep him on line, but no matter what I did he couldn't accomplish these things. I remember saying things like, "Okay, on our drive up to our friends' house we are going to accomplish these things THIS WEEKEND!" (10 hour drive). But it couldn't be done! I just didn't understand.
Then at 15 mos I was concerned because he was not talking. I mentioned it at his 15 month visit with our family doctor (who is a girlfriend of mine) and she said that if he was not saying 3 words plus mama and dada by 18 mos that she wanted to refer him to developmental peds. As I was at work one night after that, I searched the internet for ideas on how to help his speech along when I came across autism. I couldn't believe that this thing that had been lingering in the back of my mind was on the computer screen. I read about all the signs and symptoms to convince myself that this in NO WAY related to my child, but I couldn't deny the fact that he understood very little, had no words, didn't point, wave, clap, and liked to spin things and drop things on the hardwood floor to hear the sound CONSTANTLY. I was in tears that night at work and immediately asked some of the nurses if their boys did these things. They responded with a very caring "All children develop differently, Carla." I knew he had autism. My heart was broken. My dreams, shattered. I had NO IDEA what the future held for him and us. I was absolutely TERRIFIED.
That's when I met Lori on this board. Someone read my post on GP board within days of her post on the multiples board and thought man, those boys sound alike and those mothers sound worried! They hooked us up and we got each other through those really rough first months. Chase got diagnosed earlier than Jake b/c Chase had a better evaluation than Jake's first eval. Once I discovered that Jake likley had autism I immediately made an EI referral for him and a developmental ped appt. I opted for a solo practice developmental ped whose practice was fairly new and so I could get in quicker. I thought that it would be fairly straight forward-ha! He said that Jake did not have autism on three different occasions over 9 mos. So, that would pacify me for a day or two and I would try to believe that he didn't but I knew down deep he did. After his last appt with the developmental ped I made an appt with the University of Kansas Developmental Disabilities Center where he saw a team of evaluators and had a very thorough and complete eval. He was diagnosed with autism just 3 mos ago (July 2004).
Fortunately I did not whole heartedly believe that the first developmental ped was right. I wanted to but I couldn't. I am so thankful that I believed in myself enough to know that what I was thinking was highly probable. So, starting at 16 mos Jake had intensive speech therapy, occupational therapy, child development therapy. I also read books on ABA and implemented some of their principles into our everyday life. I also read Stanley Greenspan's floortime and we started doing that with Jake. We dabbled in ABA at 22 mos but it was poor quality ABA and so I got rid of it. By 24 or 25 mos I knew that was what he needed though, but I certainly didn't want to impose that strict of a schedule on him without a professional agreeing with me and I was bound and determined to find good quality ABA which was NOT what we had the first time. So, that was part of the reason that I took him for the University team eval. And they agreed. I feel like I tried to be very matter of fact about his development there although my dh thought I answered some of the questions maybe a little on the non-autism side when the answer should have been more on the autism side. In spite of that they were surprised that we had been told no autism. They appeared obviously relieved that I had stood my ground and brought him in in spite of being told no autism. He met criteria for straight autism, not PDD-nos as I had hoped.
The 9 mos between when *I* figured it out and when I decided to get on the waiting list for the team eval were the hardest, most lonely months of my life. Without Lori out there in cyber world I would never have made it through. I finally got to meet Lori in April of 2004 as we decided to take a trip to San Francisco primarily because I NEEDED to meet her. She is as fabulous in person as she is on the web! And Chase and Natalie are DARLING! And her dh Wayne is awesome! Anyway, those months were lonely. I was the only one who knew and I still blamed myself so much. My family and dh's family thought nothing was wrong and that I needed to "leave him alone and let him be." Dh himself even asked me "why I wanted something to be wrong with Jake" as if I was creating all this. I was devastated. He did not believe in me, but fortunately I believed in me. You don't learn about autism much in medical school (I am a family practice doctor) but you learn that getting the evaluations and providing some types of treatment are in order in some cases. I'm so glad I believed in myself. I didn't know I had that in me. I tend to be a little low on the self-esteem part of things but in this case I would fight to the end of the earth because this was my precious baby. On July 6, 2004 as we were walking across the KU medical center campus to our car and we had just heard those words "Yes, he does have autism," I was crushed. I didn't want to be right. I also felt a sense of relief that I hadn't been creating this scene around my typically developing child. And my dh apologized for all the months that he left me feeling so alone and isolated in my thoughts and worries.
Since last April on our trip to SF, Jake began a speech explosion. By the time of his eval he was pointing to pics in books, had a 125 word vocab, could follow many simple commands, labelled things, and began requesting things. Now, 3 months later and 3 months into 30 hours a week of ABA therapy he has a 400+ word vocab speaks in 2,3,4 and sometimes 5 word phrases. He follows 2 step related and unrelated commands, points to things in his environment, has improved his eye contact and response to his name. Jake's strength has always been that he likes to play with other children, now we are just trying to improve upon that and make his play more age appropriate. He is making amazing strides. His ABA behavior analysts believe he will enter kindergarten without any supports and I have hope that he may lose his diagnosis or maybe it will get changed to PDD-nos one day. All the pieces of my dreams for him are starting to fit back together. He is doing GREAT!
Update 8/30/05--We saw the developmental pediatrician yesterday for his one year follow-up. She didn't do a formal evaluation or anything--just observed him a bit and asked us questions. Dh and his ABA therapists were with us. The dr. couldn't say enough how wonderful he was doing. She asked me if I wanted to be her "poster mother" LOL! At one point her eyes welled up with tears b/c I told her how very very proud I am of Jake for all of his hard work and that this experience teaches you not to take the tiniest milestone for granted. That everytime he calls my name with persistence or references me in an uncertain situation I am nearly brought to tears. That's when she said "You are going to make ME cry" and when I looked at her she had tears in her eyes. She wants to see him back before he starts kindergarten to "take him back before the team for a full re-evaluation of his diagnosis." Way to go Jake!!!
Update 8/9/12--Jake is now 10 years old. We completed ABA therapy almost a year ago and he is doing WONDERFUL! He went to kindergarten at a private school and that was nightmarishly hard so we decided to homeschool for 1st and 2nd and focus on intensive ABA. At that point we were working with the Center for Autism and Related Disorders. And they took us "the rest of the way." For 3rd grade Jake wanted to go back to school and so, as hard as it was for me, I let him go. He did TERRIFIC!! He made straight A's, made friends, won the hearts of his teacher and principal, etc.---all without any assistance. No IEP, no modifications or accomodations. I went in there telling his teacher and the principal his story but also telling them not to treat him any differently from any other kid. He ROCKED! He starts 4th grade on Wednesday and is looking forward to going back to school. This is our first summer without any therapy for him and it has been pure joy. He's played outside and at the pool with his friends, had numerous playdates at other people's houses, played with his sister, and just enriched my life even more. He is an academic rock star. He plays piano like nobody's business. He is on our neighborhood swim team and has really great technique but also has a hard time with some low muscle tone holding him back. For that we recently started some kids fitness classes for core and upper body strength training. He is little. He has a growth delay and sees endocrinology twice a year to monitor his growth. He is, of course, still learning social nuances like other kids but, for him, some of them are the ones that other kids his age already have under their belt. Like, when your friend gets grounded you don't argue with his mom about it for him! LOL! But, he is so highly motivated to be socially appropriate that I only have to usually speak to him once about something and explain it to him and problem solved. It doesn't just flow into his brain naturally but things are way easier for him than it used to be. He learns by observation of other people now and believes me 110% when I offer up a recommendation to him. He knows that I am fully on his side and he looks to me for advice and teaching. I'm so proud of him. He has worked hard. He asks me lots of questions about autism and what he was like when he was little. He has very little memory of the early years of therapy--until about 8 years old. It is interesting. His sister gets speech therapy at a center for kids with special needs (mostly autism). She is just working on her R's. But, this summer as he has gone there with us, it is the first time he's been there in a couple of years (he used to do speech and social skills classes there a little bit). He is floored to see kids his age with severe autism. That has sparked a LOT of discussion. He is very compassionate. I know that we will have social bumps in the road....but so does every kid.....most importantly, he knows that he has his mom on his side as a resource who will always be honest with him and not tell him the adult version of how to handle things but the age-appropriate-to-him version of how to handle social things. It's been a ride and one I'd happily make with him all over again. The other day he and I were talking about blessings and I told him he had a lot to be thankful to God for--his family, his health, his home, his school, etc and he said, "And my autism. Although sometimes it is a challenge, it is also a blessing."
Results 1 to 8 of 8
10-14-2004, 04:15 PM #1
10-14-2004, 09:52 PM #2LoriRegistered User Over 5,000 Posthas no status.
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We conceived Chase and Natalie via IVF/ICSI after 3+ years of proactively trying to get PG. I was 34 yrs old with poor egg quality and DH was 36 years old with poor sperm quality.
It was an uneventful PG even though I started cx at just 20 wks and it always felt like the twins were going to fall right out of me. I pretty much stayed on bedrest the entire PG.
C&N were delivered via a scheduled C/S at 37wks gestation. All was fine. Apgars were good. Chase was an excellent nurser from the get go. In fact, he would eat and eat all day long if I let him! But, I was bound and determined to keep them on a 2 1/2-3 hour feeding schedule. I quickly realized I need to supplement with formula for Chase. By the time he was 3 months old, he was already taking more than 40 ounces of breast milk/formula per day!!!! He would take more...but, I didn't think that was a good idea. He just had this overwhelming need to eat, eat, eat. He wouldn't take a binkie. SEVERE colic started at 7wks of age. This was also the time that I told our Ped that I thought Chase was autistic. He prefered to look at lights or at his mobile than into our eyes. Chase cried all the time until he was 10 months old. Believe it or not, Chase weighed 30lbs at just 10 months of age (he is only 32.5lbs today at 2 1/2) It was so hard to console him. We never would know what would set him off. THe other thing I remember is how he would turn so red in the face all the time...like he was in pain. We tried different formulas and nothing seemed to change. We tried meds for reflux, but that didn't do anything either. He was simply a very unhappy baby.
Chase quickly developed a flat back of the head. He never moved his head from side to side like his sister would. He couldn't roll over and hated being on his tummy. He didn't roll until he was 11 months old, didn't crawl until he was 14 months old...couldn't sit unassisted until he was over a year, and walked at 16 1/2 months. At 20 months of age, he still wasn't pointing, had no words or sign language, rarely babbled, was flapping his arms more and more, and didn't play appropiately with toys (spun wheels, dangled toys in front of his face, etc) He was becoming more and more in his own world and difficult to engage. He didn't greet us when we'd walk in the room and acted as if Natalie wasn't even there!
He was dx at 20 months of age by Dr Bryna Siegel at UCSF's Autism Clinic.
As mentioned in the pinned therapy thread, he has received PT, OT, ST, ABA, Floortime, and several other play programs.
Today, Chase is 2 1/2 yrs old and per Dr Siegel is "exceeding her expectations! " He is verbal, engaged, playful, and a very sweet and loving child. He still has several deficits....but, if he continues to make the kind of progress he has made with intensive services over the last 7 months, he just might lose the official ASD dx. Only time will tell...but, for the first time since his dx, I am really hopeful and excited about his future.
"C&N" 9 year old twins
11-10-2004, 08:50 AM #3CathyNYRegistered Userhas no status.
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Nicky was born a month before my 40th birthday. An IVF baby like so many others here, he was a cheerful, content child. Everyone envied me his placid temperment. He started sleeping through the night at something like a month old and after some early feeding difficulties he ate like a champ. He rolled over and sat independently at the correct times, but at that point his gross motor development began to lag. We finally had him evaluated by EI at 10.5 months old when he was rarely rolling over, not crawling, and not trying to stand up. His PT concluded that he didn't like the sensation of pressure on his feet. However, he responded well to PT and stayed on track in other areas, although I noticed early on that Nicky seemed tentative at fine motor skills.
When we moved to England at 18 months, he was beginning to walk (finally walked officially at 20 months), was quite engaged socially with us and strangers, although not with other children, and was a chatterbox (although I noticed that there were some normal things he did not say--he rarely said our names, didn't make many observations, didn't ask for help, and never pointed). It was a rough year for us. DH was establishing a new department, working constantly. I was exceptionally lonely and worried that Nick was having almost no contact with others because of my isolation. He seemed to be having more and more trouble in groups. He became known at library story hour as the boy who was always crying. The occasional playdates I managed to arrange were disasters and when I arranged a tryout at the local nursery school that was a disaster too--Nicky hid in the book corner all day long. It seemed to me that his development was slowing down; as a matter of fact it had almost ground to a halt.
The summer after he turned two we enrolled him at a local Montessori with an excellent reputation. I managed to get him to the point where I could leave him there, but he hated it too. All at once, he began stimming and jargoning. At home he ran from room to room, rarely played, and resisted our bewildered efforts to engage him. Both introverts, we decided Nick wanted to be left alone (a very common mistake) and we gave him increasing amounts of time alone. His eye contact, which had become erratic, became poor. Finally, one of the teachers admitted to me that she had never seen a child behave the way Nick did. I took Nick in to see our local g.p., overrode her objections that he was behaving normally, and demanded an appointment with a local developmental pediatrician.
She barely observed him before barking out, "He's definitely showing features of autism. . . I can't say any more than that. . . You need to find a speech therapist. . . No, I can't give you a prognosis. . . I'm sorry, your appointment's up and I've got another family waiting."
We were devastated. We both remember that month as one of the worst of our lives. But we took action too. We made an appointment with a child psychiatrist back in New York, I posted on the Parenting over 35 board and got lots of sympathy and advice from the other special-needs moms. Instead of letting Nicky run away, I started following him from room to room and engaging him however I could. I would read to him endlessly, sing songs and play baby games like This Little Piggy, Peekaboo, Pat a Cake, and Pease Porridge Hot. He responded immediately and we soon felt that, no matter how bad things were, we at least had our son back.
A month after the initial diagnosis, we took Nick to New York to be seen by a child psychiatrist. She gave him very detailed testing and told us he was PDD/NOS and suggested a course of therapy that we set up once we returned to London. That was roughly a year ago now. Nick has not made the amazing progress some folks report. He has made extremely good progress in fine motor, gross motor and social skills (although he still is not very interested in other children, he responds well to friendly adults). His speech is coming along more slowly but he has responded well to the PECS system and is talking much more frequently now, says my name, makes simple requests, and even sometimes says, "I love you."
Last edited by CathyNY; 05-17-2006 at 06:03 PM.Cathy
and Nicky, seven years old
There are no shortcuts to any place worth going.
04-08-2005, 10:04 AM #4
Marc is my second son. My first son, Paul, was conceived via IUI. This didn't work for my second pregnancy so we moved on to IVF. We did a IVF cycle and I produced over 50 follicles! Yikes! I ended up hospitalized and my embies were all frozen. After 3 months we did our FET. Transfered 3 and were blessed with Marc 9 months later. He was the easiest, most pleasant baby. He didn't cry much, just very content. He hit all the milestones at the appropriate ages, except for talking. He still does not talk and he'll me 4 1/2 soon. Around 1 year old we noticed that he wasn't making very much eye contact. He always looked at your lips when you were talking to him, but avoided your eyes. We of course brought this up to our ped. and our concerns were dismissed. We took him to Children's Hospital in Philadelphia to have his hearing tested and everything was fine. We expressed our concerns again at his 18 month old visist and again at his 2 year old. Finally they said he just needs some speech therapy, but he's not autistic. We were given a number and immediately contacted Project Child, our county special services program.
Marc was evaluated by a pediatric neurologist who immediately said he was autistic. A team of teachers came out to our house for additional evaluations. At 2 years 3 months we started both speech and occupational therapy at our house. The teachers came to our house twice a week for an hour each.
We also took him to a develpmental pediatrician for a second opinion. Her diagnosis is that he is developmentally delayed and his autism is mild (PDD).
When he turned 3 we started a full day specialized program for autistic kids. He gets ABA therapy 5 1/2 hours a day, 5 days a week. This is a year round program. He has a teacher and 2 aides for the 4 kids that are in his class. He gets taken out of class 4 days a week for speech and 2 days for occupational therapy. He also has gym class 2 days a week. He really is doing wonderful in school. The teachers are really happy with his progress. He still does not talk, but making strides. He has another year of preschool before he starts kindergarten. Since his birthday is in October he will be just about 6 when he goes to kindergarten.
Marc is starting to follow simple commands, loves playing with other kids and tries so hard to do everything his brother does.
Marc - 4 - IVF/FET - autistic
Paul - 7- IUIJennNJ
Paul - IUI - 12
Marc - IVF/FET - 9 - autistic
02-07-2006, 06:48 PM #5
Hi Everyone! I just found this bb tonight. Our ds was adopted at 4 weeks and 4 days old, Never was a sleeper at all. He cat napped his way through until he was around a year. Then I got him to take 2 30-45 minute naps and by 2 he was done napping. He's an awesome kid but has given us a run for our money and has kept us sleep deprived for the past 6.5yrs. We've been seeing doctors since he was 2.5yrs old and are finally zeroing in on a dx. He has been looked at for everything from the Autism spectrum to ADHD to Sensory Integration and now to Bipolar. We have been through intensive sensory integration therapy and that has helped tremendously; we've done the diet changes and that helped dramatically, and though it all we've been able to keep him off of meds until he was 5.5yrs old. He has been on Seroquel (the lesser of the medicinal choices; we insisted on starting out slow) for the past year and we just added a blood pressure med. at night for sleep.
He has uncontrollable rages at times and doesn't sleep and is very impulsive. We feel like the Early Onset Bipolar DX is probably going to turn out to be what our ds has. The change in him now that he's getting more sleep is Tremendous!! He's a totally different kid, and now that we're getting more sleep were better and more patient parents. We can also relax when he's around other kids and don't have to be right on top of him anymore. We got his first report card last November and his citzenship marks were all perfect! He's interacting appropraitely with the kids and we're so proud of him. He's not knocking them off their feet anymore; that was a sensory thing; deep touch responses.
We still have a long way to go but we've come so far all ready! Look forward to getting to know all of you! Great Board! Not sure if we fit here or not but hope you don't mind if we try it out.
08-22-2007, 03:54 PM #6MonchhichiRegistered User Over 5,000 Posthas no status.
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Jordan was conceived through donor IUI (Metformin, Clomid, HCG trigger, progesterone support). It was an uneventful pregnancy. My water broke one week before my EDD. Contractions started 12 hours later. It was another 12 hours before she was born, through vacuum extractor delivery. It was a LONG, rough delivery.
We had feeding issues from the beginning. She wasn't gaining properly and BFing was very painful. I continued to BF, but supplemented with formula. From the beginning, she was constantly spitting up. She was gassy and miserable. I was told she had mild reflux and she would outgrow it. She had terrible constipation as well. At 3 wks, my dr told me she had "colic". She cried from 5 pm until midnight every night. My mom said she had never seen a baby so unhappy. Despite that, I wasn't taken seriously. I tried switching from a family dr to a pediatrician. I still was ignored. She didn't like the swing or the bouncy seat or anything else really. At 4 1/2 mos, the doctor finally suggested that she may have a milk/soy protein sensitivity. Within 24 hours, her gassiness disappeared and she wasn't nearly as miserable. Despite that, she continued to have constipation. She also was beginning to show a LOT of stranger anxiety and sensitivity to bright light and some sounds. At 9 mos, she finally outgrew the reflux. At that stage, she was also able to switch to a milk-based formula. Though we were seeing improvement in some areas, she was still very shy and very unsure in new situations.
Despite all of this, in some areas, she was VERY ahead developmentally. She said her first word at 7 wks. I would have thought I imagined it, but it was confirmed by complete strangers. They would walk up to her in the stroller and she would look at them and say, "hi". She also said "mom" and "mama" at this stage. She would call me when I put her down. She was speaking a huge amount by the time she was 15 mos and was holding full (adult) conversations well before she turned 2. Sometimes she would sit in my lap and repeat back entire episodes of cartoons she had only seen once or twice... word for word. At that stage, I thought of autism as a possible diagnosis and did research it. However, everything I read said there needed to be a language deficit. She obviously didn't have that... she was very advanced verbally. As a matter of fact, she talked more like an adult than a child. I remember at 3 she used words like "responsibility" and "compromise" appropriately.
Over time, we started to question whether things were "right". By the age of 2, she would WAIL when out in sunlight. She couldn't handle the sound of the vacuum cleaner or the toilet flushing. She was terrified of travelling on highways. She didn't like swings. She hated a change in routine. She had no clue how to interact with other children. She would pretend to be a cat or a dinosaur if she felt insecure. She started becoming aggressive in daycare. She was biting, kicking, pinching, pushing, and stealing toys.
Between 3 and 4, the phobias were very problematic. She was afraid of any loud noises. She couldn't handle vacuums, toilets flushing, firecrackers, the TV turned up too loud... anything that made a lot of noise, really. She also began having issues with what she could handle wearing. She lost it if you tried to put jeans on her. She decided she only wanted to wear "soft pants", with no zippers, buttons, snaps, etc. She also didn't like anything that was in the least bit tight (like the PJ's that are supposed to fit snugly). She freaked out when restrained by the 5 point harness in her carseat. She couldn't stand wearing socks. Shoes needed to be a size or two too big.
At 5, I once again questioned my dr. I asked about her behaviours, and he was, once again, very dismissive. However, my mom had come to the appt with me and she really pushed, so he gave in and sent J to a psychiatrist. She was diagnosed with Asperger's Syndrome and Sensory Integration Dysfunction. A few months later, she was also diagnosed as being tongue-tied (gee, I guess that's why we had so many BFing issues!!)
03-06-2012, 07:54 PM #7Kgon1505Registered Userhas no status.
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Well let me tell you about about my son. He is the most beautiful and funny little person you will ever meet. He exudes such confidence and happiness when he enters a room. He is funny, he is silly, he is affectionate, he also has Autism.
The first year, he reached all his milestones on time, in fact, he was a bit ahead of schedule for quite a few things. At 11 months, he could build a tower of blocks like no one else, and complete not one, but two Melissa & Doug Puzzles at a time. Was very social, very mischievious and very, very busy. & then the ear infections began. At about 18 months, we watched as my baby slowly became more and more lethargic and less interested in us and others. He was responding less and less to his name. He was still not verbal in any way or form and was becoming less and less interested in participating with children of his own age. We of course blamed this on being an only child and not being exposed to other kids. He was fascinated by stacking anything he could find, engrossed by watching the same shows over and over as he screamed and flapped his hands excitedly. His play became repetitive and his eye contact started to diminish as each day went by. He could open and slam doors or drawers for hours and was obsessed with watching elevator doors open and close. At this point we were convinced that this was just a phase that he would soon outgrow, he didn't.
I clearly remember, his great grandmother laughing one day and saying "Oh look, how cute, he likes to walk on his tip toes". Something we had noticed but never thought anything of. Words that would ring in my head like an alarm later on. Who knew, such a simple observation would later on send me on a hunt for any information I could find on the correlations of his behaviour and Autism.
We spoke to our Family Doctor about how there was still no sign of speech. We were referred to a Developing Paediatrician and booked the appointment for an assesment, but this was still months away.
I clearly remember speaking to a friend about our concern of his delayed speech. She gave me the whole, "boys develop slower than girls" speech & began to tell me about her nephew who had gone through a similar ordeal and was found to simply just have a speech delay. However, she then continued to say that she believed he was mildly autistic regardless of not having the diagnosis. I remember asking why. She rambled off a list of things he did but the one that stood out was "& he walks on his tip toes". I remember asking what that had to do with anything? She stated, "Well that's one of the symptoms." I couldn't tell you anything else about this conversation because I felt like I had been hit in the head by a hammer. Grandma's observation was ringing in my head and my mind started racing faster than the speed of light. I couldn't get to my computer fast enough to type tip toe walking into my search engine. I mean after all we just thought it was a speech delay. We never even considered Autism at this point. My knowledge on ASD's and PDD's was very limited and biased. I mean Rain Man had Autism. I have a cousin who is severely autistic, and my baby in no way acted like that. He was not violent, he was not rigid or set in his ways. He didn't have any tantrums if his routines were disrupted. I mean come on, he did not rock back and forth, he didn't flick his fingers in front of his eyes. There had to be some mistake.
I was on a mission until his assesment date. I would try to do as much research on our own. I suppose that uncovers the reason for our website. The more I typed things like hand flapping, and toe walking, and speech delay into the search engines, the more I kept finding websites that linked those words to Autism Spectrum Disorder or Pervasive Developmental Disorder. Lists of symptoms, that my son was exhibiting, yet part of me did not want to accept. Facts, facts and more facts... however what I needed was a personal perspective from other parents with children with the same traits and symptoms. I wanted the personal story, and most of all I needed to know what the diagnosis was. Surely, there had to be something else that was causing his behaviour. I needed answers, advice and most of all hope that my baby was going to be okay. After all, my child was not violent, was very passive to tell you the truth, did not harm himself or others, he just lacked interest in others. I needed to hear he would outgrow this behaviour, that it was just a phase. It wasn't. A few assessments and a handful of doctors later, at 2 years and 10 months we received the diagnosis. Our baby did have Autism, a very mild form of it, but he does. My world came crumbling down. I kept envisioning those bright beautiful eyes becoming empty. The more I searched the internet, I found the sad youtube videos of how children had regressed further. Smiling babies who within a 5 minute slideshow turned into crying toddlers/children who did not want to be photographed or bothered. Yes, I wallowed in self pity, I would be lying to you to say I was always this optomistic. However, thankfully, one day I snapped out of it. Perhaps it was the way my husband could pull our son out of his world by being the big kid that he is. Loud & Cartoony but it seemed to work, even though there were times where he had to amplify it a few notches, depending on the day. & like that, the grief period came to an end. I was 8 months pregnant with our daughter and decided that we would not let Autism beat us or consume us. We would beat it, for our son, for our daughter, for our family.
So we changed paths in terms of research. After all, I kept hearing that Early Intervention was essential, surely there had to be a way in which we could reach him and help him before he started to disappear more and more into his Self Stimulatory Behaviour. I read anything I could find. We enrolled him in preschool to get him exposed to other children. I read about vitamin supplementation, not only getting the strongest multi-vitamins I could find but focusing especially on Omega 3 fish Oil which we implemented to improve his concentration levels. His eye contact improved dramatically and he seemed more tolerant of us intruding into his world. I also started him on Vitamin D as I felt that he might have a deficiency somewhere. It took care of a lot of the lethargic behaviour he was exhibiting.. His eye contact began to improve dramatically and he seemed more interested in others. Even though he was not participating in play with others, at least his parallel play skills were improving. I couldn't get enough, I needed more. There had to be something else. I read about the GFCF Diet in which you remove gluten and casein from his diet. & then there was the Therapy. Speech Therapy, ABA (Applied Behaviour Therapy), IBI (Intensive Behaviour Intervention) Therapy, Music Therapy, Art Therapy and the list goes on and on. We enrolled ourselves in every work shop we could find about Autism. Visual Schedules & Social Stories to assist with transitions which had begun to become a real problem for us. There are numerous resources out there. We just have to tap into them and not let the sad story bring us to tears and wallow in self pity. You can't help anyone with that kind of mentality.
So what can I tell you about my dear son's progress that can give you hope? Well his eye contact has improved greatly, he wants to interact with us and he is becoming more verbal with each passing day. We have turned ourselves into live cartoons for our children, but those smiles and giggles. So worth it! The receptive and expressive delay that he once had is improving in leaps and bounds. He labels, he sings, he dances, and has returned to being his busy and mischievious self. So my point is, there is hope for our kids and families. Don't sink yourself in grief of losing your child, but focus on getting him or her back! With a lot of hard work and dedication, your child can come out of his/her shell. & you will celebrate each accompishment like you have never had a reason to celebrate before. You will become their greatest cheerleader and a better parent and person for that matter.
There were some wise words I heard at a workshop once when most parents were still grieving over the diagnosis or possibility of one...
God chose you, because he knows you can handle this and are the most capable person for this task.
Last edited by Kgon1505; 03-08-2012 at 09:21 AM. Reason: Removed website link
04-03-2013, 07:04 AM #8michelle1986Registered Userhas no status.
- Join Date
- May 2009
- My Mood
Hi all. So my son was just diagnosed w/ autism back in OCT. He jsut turned 3 on March 30th. We did ABA therapy from 2-3 and he just started OT in Feb. He is currently in a social skills group 3 days a week and we hope to integrate him into a regular P3 in the fall. Is there anything else we should be tryingPCOS, Hoshimotos syndrome
6 throughout (2009-2013)
Ethen Alexzander (3/30/10)
7lbs14oz, 20in (IUI #2)
Austism Spectrum Disorder
Addyson Elaine (6/14/11)
right ventricular hypertrophy/PFAPA/BOR Syndrome
PPROM & premature labor 31wks
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