Hi everyone! I'm Beth, mom of 4 kids. Two have ASD's, one has ADHD and one (so far) is "normal".. love how we all say normal.. Not sure how to do all this, as this is my 1st blog experience.. feel free to ask anything..I'll probably type as though I'm talking to you in person so bare with me if some of rambles on or doesn't make sense.. I tend to get off track sometimes..
My oldest son, Cooper, will be 13 in June. He was a terrible pregnancy. I was sick from the day I found out, til after I delivered him. I was on many, many meds; most of which were nausea meds for cancer patients. I was in the hospital the majority of the pregnancy due to vomiting and all that goes with it. He was delivered fine; no problems; grew normally. All though we noticed from day one he slept ALOT... being a first time mom, I had no clue this was not normal but he had to be woke up to eat and play. He laughed, cried, did all the normal emotions a baby does.. no concerns.. he was growing fairly big, quickly. He had a big head but was always measuring off the growth chart at his well baby check ups so nothing was mentioned out of the normal. I was one of the moms who also got their kids shots on the THE DAY they turned 3mths; 6mths; 9mths; etc.. I wanted it to be exactly right when I put that length/weight in the baby book....I had taught pre-school for several years before having Cooper; and did notice that he wasn't saying anything... we lived in a retirement condo area; no family around at all; not too many friends; none of which had kids or were at home during the day. I was told numerous times by the Ped. that he's a boy; get him out; do things with him.... so I did.. he didn't like to do different things; he hated the car in reverse..would panic and freak out when it rolled in reverse.. so I managed to park facing out at all times..just one of those "quirky" things he did.. I didn't notice however; that he never pointed.. he did have eye contact and smiled and played well with me and his father... one thing I do remember is when I would take him to the tennis courts to play; he would rather walk the boundary outlines than play with the balls or he'd ride his bike around the lines and never off it.. to me I thought my kids a smart one! already following lines .. didn't realize what it really was. oh the hind sight!!
age 2, I was finally heard by the Ped... he referred Cooper to our early intervention program here in SC called BabyNet. He was evaluated to have speech; motor; cognitive delays and qualified for speech, OT, Pt, and 30 min a week of play therapy..in the mean time I enrolled him in a preschool program at a church I'd heard about...he went 2x a week for 3 hrs... they told me he never talked or played with the kids, he sat under the table with legos and balls; because he never bothered anyone; they just left him alone. His class picture, he is holding balls..he had to be picked up first each day or he'd scream in the hallway because he was not leaving as other did...so I had to get to the church 20 min each day early; just to get to the first of the line each time.... ..
By age 3 he was going to be transitioned into public school...OH BOY!!!.. this sounded wonderful to me.. I had no idea there was such a thing... your kid can actually go for free, 5x a week, all day to the elem. school just because he doesnt talk and has "quirks"??? sign me up!
For the next year (age 3-4), he went to the elem school across town. I drove him and picked him up every day. He was not allowed to stay past noon because he was too disruptive and wouldnt nap..at the end of the school year I was approached by the teacher.. had I ever thought about Autism... ?? Well, I had been told one time by his speech therapist that he couldn't have Autism because he could draw a smiley face .. which showed emotions..which kids with ASD don't understand.... YES!! I know .. CRAZY!!! and speech teachers are not allowed to say things like that either.. once again.. hind sight...
Our school system has an Autism Learning division.. the school he attended had a consulting teacher for Autism right across the hall from where he'd been the last year... she had been watching him and wanted to meet him for an eval.. after 20 min; she said she wanted to meet with my husband and I at the school the next morning to discuss the eval..
(I did not know this but before Cooper was diagnosed, there was a class action lawsuit against the school district to get ABA for kids; Cooper came through the system a few months after it was dismissed) we were told he scored enough to be considered Autistic. We were not shocked; we were not scared; numb; nothing.. we didnt even know what the definition meant.. they never told us what it was, I guess they assumed we had looked into it..the internet was not huge and we didnt even have it in our condo; so it was pretty foreign to just look something up and be given enough info to soon give a speech on it.
They offered him ABA therapy 30+hrs a week, intensive 1 on 1; is what we were told.. speech; OT; all kinds of wonderful things.. I mean we'd won the lottery pretty much as far as services goes.. in the last 9 yrs I have never met 1 person with a story like mine ; where their child received "it all"... we were quite lucky.
He stayed in the special ed classroom for another year, began to say sounds, do more things, etc.. then he was mainstreamed into kindergarten.. wonderful, understanding teacher.. she really took to Cooper and his therapists.. here was a kid that was really struggling to learn and didn't know how to goof off; he has a wonderful memory and is a sight reader.. so he learned his word wall words in kindergarten in a matter of months for the whole year! He learned routines and how to be flexible as well... more importantly... he was with NORMAL kids... they saw how he acted and from day 1; were told "he's ok; he's just upset; he doesn't understand; can you show him how to do it" and so on... the kids were always aware of him; he was front and center and picked to do the same jobs as the rest of them; he just had a "helper" with him..
2nd grade we noticed he was becoming obsessed with movies.. he repeats them; knows obscure facts about the; repeats scenes over and over; says many comments from movies at the wrong time.. he got into trouble alot.. he couldnt focus.. we decided to take him to MUSC in Charleston to see what the Drs thought about meds for him to focus. He was started on Adderall Xr for a few months then when school was over she changed him to Paxil (big mistake!!!) It's addicting and he went through withdrawl at the end of summer; like cocain withdrawl!! it was awful... sick and delierious...never again...
He stayed in that school through the 3rd grade; always mainstreamed; always with a 1 on 1 aide. Still got pulled out for resource (math, writing, speech, etc) but held his grades at an average level and had tons of friends.. he did many inappropriate things ; he was not the perfect kid).. would pull his pants down in class, said things that hurt feelings..( why do you have a big gap in your teech?) etc.. but each was a learning lession for all around him and he included..
3rd grade was most difficult, the teacher that he was placed with didnt like him; didnt like that he had an aide with him; didnt like that he had so many accomodations (which he has a ton); pretty much let it slip one day that she didnt "buy into all this" and he was removed from her class. He was moved into another classroom and had to start over; he was a mental basket because he knew she did not like him and became very anxious... we (his team) began a Circle of Friends lunch. every wed. he and 3 others would go out to a portable and eat lunch, skip recess, play games, chat, do a social story, etc.. hang out pretty much.. you'd have thought that he was taking these kids to the mall... there was a waiting list each week for the kids..the teacher loved it ; she even used it for many years following for other scenarios..
It was time to consider moving him to another elem. school.. his little brother would be started kindergarten soon and would be attending the school in our area.. Cooper's school was not our designated area. so we decided it was time to move him.. he'd go to 4th and 5th and then move on to the middle school...
The aide moved to the new school with him and we introduced Circle of Friends and it continued to be wonderful.. the teacher was handpicked (a male teacher) and he was wonderful. so undertanding and Cooper was paired with several boys that were athletic and didnt fit the usual type for hanging out with someone like Cooper. He had transition summer services to get him used to the school before he started and he did quite fine. He began in the chorus and was 1 of 2 boys in the whole thing; so he was pretty much guaranteed a part for every show! He stood in front of the whole school at most assemblies and announced things; sang a solo; loves being in front of the camera.. drama / music is his thing.
His favorite channel is TCM; he subscribes to the monthly magazine; he has all the old dvd's of lucy ball; abbott/costello; silent films; Gone with the Wind is one of his big collections; he knows all the actors and facts about them..
He is now in 6th grade and in middle school; he has grown 7 inches in the last 2 years and is quite tall; thin. He has begun stimming again, nervous, anxious, yelling, screaming when frightened; fire alarms are the worst; he has earplugs in his back pack for gym and any other time he may need them. There is no more recess or circle of friends. several schools combined to form this one so he has very few friends from the old school that are in his lower classes.. he is not interested in school like he once was; likes chorus but does not get along with the teacher as this is the "big time" and shows are paid admissions and graded and etc... so he is not "cute and funny" when he messes up or goes off on his own, etc.. that was a hard pill to swallow! He runs from class now when he doesnt understand things.. this is a very extremely difficult year based on the fact that we've had a pretty easy ride up til this point.. he was never high functioning.. the ABA and all the extras we created for him.. got him to this point.. he is maintaining an average grade but his aide creates his tests now... she takes his notes for him as his handwriting is so bad. he takes tests on his own or orally from her in a separate room.. so many things we had him doing maintstreamed he's regressed because of his fears/anxiety with the new school and situations he is put in each day. school begins an hour later and lets out an hour later from elem. school.. that alone was a huge ordeal for him.
the drs think his biggest hurdle is puberty; he is getting a moustache and has to use deodorant, etc.. and cries that he does not want to grow up. he has been suspended from school already for stomping on a teachers foot (an entire day of unfortunate things led up to this final breaking point) he has pulled a teachers hair and grabbed his own aide by the shoulders; all when faced with anxiety and frustration...
I have typed all this just to give you a glimpse of who Cooper is. I can tell you anything about him and answer any question you have about him or any therapy he has ever received. Please feel free to ask whatever...
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Beth,
ReplyDeleteThanks so much for your willingness to share and helping us follow each year of your journey with Cooper! I commend your patience and doing everything you can to keep him content and happy, particularly with the difficulty of him getting older and experiencing adolescence.
Do you think your nausea during pregnancy or the vaccinations had anything to do with Cooper's diagnosis? What do you think about the whole vaccination-Autism debate? How was the pregnancy with your younger child?
Thanks again for your time! It's so interesting and inspiring to hear a firsthand story.
Elyse- great questions! I'm asked them alot actually because of having 2 sons and such different scenarios (pregnancy wise and shots)..
ReplyDeleteAs far as the meds I was on during my pregnancy goes.. I have no clue.. I was on several things over the 9 mths; lost over 30lbs. I weighed 100lbs. 1/2 way through my pregnancy so the drs were doing all they could to help me save the pregnancy. Several of other moms also say they were very sick but many were never sick a day...
As far as vaccinations goes..well that is a HUGE debate and always will be.. I can not speak for anyone other than my 4 kids. Cooper got his 15mth MMR shot right at 15 mths. Being a first time mom we video taped all the time; so we have him covered in this rash. about 2 weeks after he recieved the shots; he was covered in a measles type rash. I called our Ped. asked the nurse about it; she said it is a possible reaction to the shot and to give him tylenol and see if it goes away. about 4 days later it began to go away and that was the end of it....now I do believe there was something in it that caused a reaction (obviously from the rash) what it did mentally I have no idea.. he was never talking or pointing or doing "normal" 12 / 15mth milestones; so I can not say that he had them and then lost them.
My 3rd son and now 3 yr old, Jackson, was a typical normal pregnancy. I was sick for 4 mths but nothing out of the normal. (my 2nd pregnancy was text book; no sickness or any problems beginning to end)
I specifically did NOT give him the MMR because of so much debate and all these years later, I fely like if there is anything I can do to maybe prevent some of this madness I will. He got all regular shots, but spread out.. he never received more than 2 shots at 1 office visit.. this meant going back several months in a row to get them all and having the nurse give me a guilt trip or comments about how Autism has nothing to do with shots,etc.. but it'm my child; my choice.
Jackson only received the chicken pox shot at his 15mth check up. he was beginning to talk, he pointed; had all regular emotions, was a "normal" child to me.
within the next 3 mths he grew over 5 inches and on the day he turned 18mths; he began walking on his toes! what a huge blow it was, because he had stopped talking and was starting to get upset about things that he did not before.. I suspected but the moment he went up on his toes and began walking around the living room; it hit me... it was right in front of me. (tip toe walking is a stereotype of Autism)
So, Cooper was never "normal" ; got the shots all when he was supposed (not split up); had a skin reaction to the MMR.
ReplyDeleteJackson, was "normal"; got his shots split up; no reactions that we saw; between 15 - 18mths had a huge growth spurt and lost most milestones and I could "see" him becoming Autistic.
my 4th pregnancy was same as Jackson. sick unitl 4mth month; she received all shots split up and did not receive chicken pox shot until age 2; has had no reactions that we've seen and is typically normal.
*my 2nd child did not receive the MMR shot until he turned 8yrs old; he had no reaction.
**My kids get all of their shots; I DO believe in vaccines.. I do not beleive that they need more than 2 at an office visit though.I spread them out and monitor how their health is when they get them.
My personal opinion on Autism-vaccines...is this..I think my kids have something in their body that when they got some of the shots; the Autism was triggered... I think its got a genetic component because I have 2 on the spectrum. I think with Cooper who got all the shots at each visit; his was worse. Jackson's was milder based on the amount of vaccine introduced into his body.
*The only issue I have with the CDC in regards to its comments about vaccines dont cause Autism; is that they will not even acknowedge that there is a "possible" connection or trigger capability.. with so many kids in the world getting so many shots at 1 office visit; over 4 yrs of life; why is it so crazy to suggest that 1 out of 100 could "possibly" have some condition triggered by them all?
Beth,
ReplyDeleteWow. Amazing. I have a couple of questions to ask if you are okay with answering them. Raising two children with Autism, how do you stay sane and at peace with the environment you have been dealt?
When you found out that Cooper had Autism, what effect did that have on your immediate and extended family? Did it bring you closer or push you apart?
What teaching advice would you give to a future special educator, with your sons experiences in the classroom in mind?
Thank you for your willingness to participate in our class.
Beth,
ReplyDeleteI am so inspired by your story and so intrigued by Autism. I think the spectrum that exists with Autism is incredibily interesting, and also scary for me as a future educator. I have worked with several kids who have been diagnosed with Autism over the years I spent working as a camp counselor for kids with disabilties, and no two are ever the same... or even similar... in their tendencies.
My question for you is: As a parent of two children with Autism, are there any similarities between them that are related to their Autistic tendencies, or are they completely different? I am wondering since they both have similar genes, if Autism has affected them in a similar way?
Thanks so much for your time!
Beth,thanks for sharing your experience with us.I know it was hard for parents to accept the fact that their children are Autism. I think your husband and you did a good job to take care your children. Both of you are great parent.
ReplyDeleteMy question is what kinds of public services have you received for consulting or treatment?
I am also curious about the relationships between your oldest son and his siblings, what kinds of family activities are in your family to help your children develop? Do all kids play together well?
Thanks
Zhan
Thanks for sharing your experiences! You made a great point about the importance of informing parents about their child's diagnosis. Even if parents want to know more, it may be difficult to know where to start. With all the information on the internet, there also comes plenty of misinformation. Teachers must make every effort to inform parents and patiently respond to their questions and concerns.
ReplyDelete~Carrie S.
Megan- I have to say the biggest difference with Cooper and Jackson is the congition level. Cooper never understood anything..I could tell him to bring the ball to me to play and he'd just sit there..later I realized with ABA, I had to teach him what a ball was, what go get the ball meant, bring me the ball, then I had to get him to learn how to play with me ..very difficult; we had to break everything down into small steps for him. With Jackson, he understoon like a typical kid from day 1.. he always understood what we were asking him to do..his issues were more with doing odd things, not playing,, he never played.. just would sit and watch tv ..
ReplyDeletethe similar things are : sensory issues, both dont like to have sticky, things on them; love the water but not crazy about baths; walk on tiptoes; repeititive behaviors.. line things up and do something over and over.. they both are obsessed with dvd/movies.. will watch the same thing over and over. my husband gets mad at me when i say.. remember when cooper did that?? but I cant help it.. I compare them alot, Jackson does alot of the things cooper did at age 3.. however, cooper did not speak words til age 4+; he was not diagnosed and received therapy til almost age 4... jackson was diangosed so much earlier and began receiving therapy and he was already talking words when he began to regress..after being in the clinic a few months; he began sentences... so the cogitiion was a big deal in my opinion..
Socwall21- when we just had cooper, I had no clue what I was in store for...no one showed up on my door and said here is a hand book..but i had a great support group of ladies that did tell me I'd be ok; he would get his hair cut 1 day by a real barber not me doing it while he slept at night over a 3 day period..many of the normal things i just wanted him to be able to do..go to walmart without getting a cart of food and having to leave it and walk out because he can't sit still going down the aisle..or a smell freaked him out or we can not walk past any tvs because then he thinks he can sit and watch the movies.. etc.. I kept asking them questions and meeting them every month to be re-assured..i'd see their kids and see how worse or better off some of them were.. so things were always put in perspective..
ReplyDeletethe effect it puts on your family/friends is tremendous.. several of our parents knew/agreed something was not "right" with him..others said he was too spoiled or just a late bloomer..some had no clue what Autism was .. the grandparents just assumed that meant he was retarded; they never heard the word before..all the family still treated him the same; just knew they had to be more patient and give up the "normal" gandchild they had envisioned... they have different stories to tell about their grandkids.. he finally said 2 words, or colored a picture, or jumped up and down 3 times in a row..the little things that most take for granted. We lost friends because we stopped going out.. cooper would flip out and throw himself on the floor; he didnt play with kids so the I stopped getting asked to playdates,, the phone stops ringing like it once did.. you see at reunions or the park how different your kid really is.. he stands out and its painfully obvious.. I would get and still get books, papers, emails, every tidbit of info from grandparents on the newest and best therapy or they've heard about this kid who was "recovered" and they want me to take him to CA for a drs appt or something that is easy for them to suggest but I have to do it; read it; search it, etc..they mean well, but they still want that the child to be normal; if you accept he has a lifelong issue then its like giving up.. to me its saying I'm ok with it and moving on with life how ever it may be.
Zhan- my kids get along pretty well, we are lucky. Cooper always wanted a sister.. he would beg me for a Princess..he is infatuated with Disney and princesses from movies/tv.. he wanted one. he cried when I told him Jackson was coming along.. he screamed and yelled with excitement when I told him Shelby was coming.. for some reason he does not get along with Garrett at all.. he does not like him and tells us all the time how evil garrett is and how he should be banished or sent to military school.. there is no reason for it; he just does not like him. Jackson adores his brothers/sister.. he follows them just like a typical younger sibling, loves to wrestle with them.. shelby is only 12 mths younger so they are often treated like twins..they do most things together. she pushes him to do more and play more; she is the best peer interaction we could have ever hoped for for him.
ReplyDeleteCooper does special olympics swimming every march - april.. garrett goes to watch his meets and practices; friends come as well..the little ones are too small to undrestand, so my husband stays home with them.. I usually do most things with cooper; he prefers it.. he will ask for me 100% of the time over dad..just because I've always been the one todo things from the start. garrett does all sports at the rec ctr.. cooper goes to watch and support him (yes, we make him go).. the kids all love to swim; we put a pool in the back yard and its the best thing we ever did.. major bonding family time.. bondfires out back; listening to the ball games or radio, we still do not take the little ones out too much.. my husband will take the older 2 out to do things or I will; we usually switch off; depending on the activity.. they all play wii and enjoy it.. pretty happy family; we are very lucky!
we received early intervention services from age 2-3; then he transitioned to public school to receive services.. therapy was at the school as well..there was no private autism clinic like there is now, there are more service providers now that there are so many more kids diagosed..there are a few consuliting ctrs but you have to travel to them; some are covered by insurance or the state..