torstaina, toukokuuta 31, 2012

Päivä 79 - presentaatio autismista meidän perheessä

Ystävä hoitamassa poikia, M koulussa ja minä puhumassa - autismista... tässä versiossa nimet muutettu ja poistettu, alkuperäisessä toki ihan paikallaan...

From the very first moment M seemed to be very special, and not in the same way as most parents see their kids as being ”special”. She was rarely happy, she fussed and cried, she needed to be held 24/7 and she only slept for short periods of time. I was one of those parents who never intended to wear her baby, yet when she was two weeks old I already had a Baby-Bjorn, an Ergo and one of those wraps. It wasn’t until later we understood that most babies tend to sleep and be happy, at least part of the time. She would not let me leave her with anyone, including her dad, not even for short periods. When everybody else was able to leave their baby with the instructor at the parent baby class, I could never leave her, cause she would scream in horror… at that point she was only a couple of weeks old.  I remember sitting at those classes either without daring to move cause she had actually fallen asleep or in the other room bouncing on a ball trying to calm her down. All the other kids seemed to like riding in a car. Mine hated it, she screamed from start to finish… We have even had her cry all the way from Portland to Seattle.

When other children started interacting with the babies close by, M never did, she just wasn’t that interested in other kids. She was more into their toys. Other kids laughed with their mothers, M didn’t… well, she would laugh, if I tickled her or maybe if we played peek-a-boo, but I never got that spontaneous baby giggle out of her. Time went by and she developed normally, to be honest she was ahead of the curve and she seemed to have some sort of negative power within, driving her into learning new skills quickly. She was cruising by 8MO, walking by 10 1/2MO and said her first words at 13MO.  She ate anything we chose to feed her and she ate with a fork before she was even one. She developed so well and so age appropriately that it never really struck me that she really was quite different from others. What did strike me was her lack of interest in animals. She wanted nothing to do with our cat and our dog. It was as if they annoyed her. At play dates she would play by herself, or most of the time she avoided everyone and wanted to be held by me. She loved playing with her train set, she loved making puzzles and by age 2 she was fully into real jigsaws 24 to 36 pieces and she would do them over and over and over again. She seemed to be very smart. She even knew from the outside which window belonged to which room at our new house.

She had her first tantrums soon after her first birthday and most times it was about someone else touching something that belonged to her – well, who does like to share? But her tantrums could last for hours and once she had one the rest of the day was ruined… she was in a foul mood - period. When other kids got into their “terrible twos”, we really had no idea what they were talking about. We had been there for a long time already and their kids seemed kind of easy with their fifteen minute tantrums.

Most of spring 2010 I was quite heavily pregnant with the boys and M spent her days watching me lay on the couch. We read books, did puzzles, played trains and watched TV and finally I was stuck at the hospital. She refused to speak English, her speech was very hard to understand but we kept thinking it was due to her being bilingual. L was trying to concentrate on our new house and his work. The boys were born in early June, four weeks prematurely, we move on June 9th… M’s life was turned upside down and inside out. She was barely two years old and her entire life had changed. Her first reaction to the boys was probably confusion.

She never said she didn’t want them, but she did let her actions tell us that. She tried jumping on them when they were on the floor, giving them “hugs” and being very rough in all ways possible. She never really tried to interact with them, she didn’t care. By Christmas we were in a situation where we sought help for the very first time. We found a very nice therapist who helped us with transitions and taught us to make her a schedule, to give her a heads up and avoid changes in our plans. I think it was around this time when, for the first time I said: “If I wouldn’t know better I would say she is autistic”. She enjoyed spending time in her room by herself, she arranged her toys, our sofa pillows, books, flatware, glasses, teacups and anything she could find in long lines… the lines seemed to have an extremely strict order and no one was allowed to touch them - easier said than done with two crawlers in the house… her behavior toward her brothers seemed to get rougher and rougher, and she really did not care if they got hurt or if I got angry. Since she seemed to enjoy solitude, timeouts were really not an answer… and since our therapist told us to avoid punishment of any kind we started to encourage her to play in her own room whenever she felt like she needed some alone time.

Our friends new about our issues with her, but no one believed us. How could they, she was such a nice little girl. Quiet, shy and polite… They were never there when M pushed one of the boys down the stairs just for fun, or when she broke her room door, or banged her head on the walls. She still kept waking up during the night and everybody kept telling us that was normal too. I kept wondering, if it really was normal for a child this age to wake up 2 to 15 times per night, even when in our bed.

Finally during Christmas break 2011 I went back to our pediatrician, without M this time. I told her about her speech that did not seem to get better, I told her how all of her friends seem to play with other kids but M still didn’t. I told her how M couldn’t keep still for a moment while watching TV, she was constantly bouncing and jumping and fidgeting… the boys where bruised and she just did not care. How she didn’t even notice if I cried, how she never asked how I was and how she just seemed to be in her own world. She hated sitting in the car and we hated traveling with her… how she used to eat everything and one by one she stopped eating different things. By that time she was mainly living on toast and sugar. If we got lucky she had some egg whites or a banana or some cheese… she liked to eat white things. She couldn’t do anything without my help… I mean she could but she didn’t want to. She kept repeating lines from Thomas the Train and used those lines as her own lines during a conversation.  If strangers approached her she had her standard answers, regardless of the questions. I felt like a lousy parent.

Our pediatrician left the room and returned with a sheet of paper with information about Asperger’s. At home L’s first words were NO, he wanted a second opinion and a day later we sat at our former pediatrician’s office, way past closing time, having the same chat I had had with our pediatrician in RR the day before. Dr.  R has known M since she was born… and yet the answers we got were just the same.

Based on our pediatricians – yes, both of them - recommendations we contacted the School District, we contacted Mosaic – a children’s therapy clinic and we called Seattle Children’s Hospital Autism Center… Since the usual wait to be seen by the Autism Center is 9 to 12 months, we were prepared to also contact UW Autism Research Center and a private neurologist and a neuropsychologist. But this is where we got lucky and our first appointment at Children’s was three weeks after my initial contact with them.

February was her eval month; she had a hearing test, she was tested by the School District, by Mosaic and by the Autism Center…some of the tests she did several times. At SD there were five people testing her, at the Autism Center there were four… some of it was done with me, some without. As parents we filled out countless forms and questionnaires and even her teacher got her share.

Beginning of March, M got accepted in the SD Ready Start Preschool Program. As parents we were extremely hesitant, we did NOT want to label our child, we wanted her to be “normal”.  Her placement would be in an integrated social skills classroom. This means, half of the kids would be just regular kiddos and the other half, kids with similar problems.  This kinda turned our heads and we ended up saying yes. She scored 1% in the social skills testing when 100% is mean.

Mid-March we sat at the Autism Center without her and got her test results. I was still planning to fight. We needed help as a family and she needed help. Somewhere deep I knew everything would be easier if we had a diagnosis. Yet, it was a thorough shock to hear it… M has a Pervasive Developmental Disorder and she most definitely is on the Spectrum. She was not diagnosed with Asperger’s because she is not six yet, and they do not give that diagnosis to children under age six. I cried the entire way home, I cried the following day and the day after… I’ve cried a lot these past months.

When diagnosing ASD they look at 12 different things, you do not have to have all twelve, most kids don’t. You need 6/12 with at least 2 in the social category to have Autism, you need 4/12 to be considered to have PDD with at least 1 in the social category… M’s result was 5/12, her main issues in the categories of Social and Communication. Autistic kids differ quite a lot from each other and even the HFA kids are very, very different from each other and there is no “standard child with autism”.

Now we needed a plan… Social skills classroom was one part of this and I found myself sitting at my first IEP meeting without even knowing what an IEP was. An IEP is an Individual Education Program and it will follow the child through their school career, unless the entire IEP team - consisting of SD specialists, teachers, parents and our own specialists - agrees that the child does not need an IEP anymore. The IEP is regulated by law and is actually worth gold in cases like ours… I had no idea at that point, I was not prepared, and I just sat, listened and signed. It is actually vital for parents of special needs children to know and to understand the Special Education Law, and to know what your and your child’s rights are. At that very first meeting, after hearing about M’s diagnosis the school psychologist talked about SNAPS, a special program for autistic children with a very high teacher ratio. I was immediately interested and they promised to evaluate her for that, once she had started at her new preschool.

Speech therapy had started and we were on the waiting list for various other evaluations… OT, ABA, feeding, social skills etc.  I kept filling out forms and answering questionnaires. Children’s Hospital was still working with us and we were meeting with a Senior Autism Consultant and Speech Therapist, Noa Hannah through them as well.  I spent my nights educating myself about autism, educating myself in regards to different possibilities, different options, trying to understand what would be ahead of us. I was also trying to find myself support.

Beginning of May, M got accepted to SNAPS, this was a bittersweet moment for our family, since it definitely meant an end to an era. It was time to leave Living Hope Preschool… as well as it was time to give up the last strand, that held us onto the life with a “neurotypical” child.

In six months our life has gone from a life of a typical family with three children, to a life of a family with a special needs child. M has 24.5 hours of school and therapies/week. The suggestion is to have at LEAST 25 hours/week. Right now I am working on finding the perfect ABA team and a therapist. I am not “only” a full time mom, but also a full time treatment coordinator, making sure each and every specialist, clinic and school has all the information they need to help my daughter. I am her only and best advocate, I know her and our family best.

There is no cure for autism, but there is a lot one can do. Early Intervention is one of the key things.

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