Got a lot of blackberries? Then check out this recipe for Blackberry Mojito Fruit Leather.

I'm not a huge fan of fruit leathers, but this turned out super good! And, really, you can't go wrong with blackberries, mint and rum.

Friday, April 3, 2009

Parenting a special needs child

Yesterday was Autism Awareness Day and the following post is a bit of a departure from my usual writings. I wanted to share with you the struggles we've had in raising a bright, loving, wonderful child with special needs.

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"I can't do this anymore!" I screamed, as I threw the breast pump flange at the door where my husband was standing. I was exhausted, stressed, terrified and sick of pumping and trying to feed my son every two hours around the clock. I had been crying every day for the previous two weeks, hormones raging post-partum and generally out-of-control. The shock of going into labor 4 weeks early, coupled with non-stop doctor visits, consults with lactation specialists and the fear and disappointment of being told that I wouldn't be able to breastfeed my son was taking its toll.

My son was born premature and that defined every moment of our lives for months afterwards. His start to life was a rough one filled with tube feeding, light therapy and some serious swaddling to keep the sensory input low. We knew fairly early on that he had some problems dealing with his environment as he never let us put him down and he would never let a caregiver out of his sight or he would scream mercilessly until the offending person returned.

I had wanted to follow attachment parenting with him and, fortunately, many of the techniques seemed to suit him perfectly. We coslept until he was 17 months old (when my daughter was born). We carried him around in a sling, whether we wanted to or not. He would only sleep during the day in the sling and refused to be put down. I breastfed him for a year and, even though I returned to work during the day part-time, he refused to take a bottle. Ever. He would rather hold out until I got home and end up nursing all night long to make up for it.

We thought these were just sensory issues from being premature or bad habits we couldn't break him from, but the look of suspicion he constantly had on his face as he peered out of the sling showed to us that he had a highly sensitive and anxious personality. Traits we hoped he would outgrow as he matured. Yet when he was old enough to interact with other children, he would avoid them, clearly afraid of their noise, in-your-face movements and unpredictable actions. He didn't know how to interact with them and he much preferred adults that were more easy-going and predictable.

At parties, he always clung on to us, afraid to move out of his comfort zone, preferring to watch from the sidelines rather than participate. It was just too much for him. I searched endlessly for explanations of his behavior, not really ever getting anywhere concrete. He didn't appear to have autism since he didn't exhibit some of the more classic traits - he made eye contact and was extremely verbal.

In fact, he had a tremendously large vocabulary by age two, high comprehension and advanced verbal skills. His motor skills, on the other hand, were quite lacking. He could sit up at the normal age range, but he never crawled, he went straight from sitting to standing/walking at 12 months. Since he was always so intently studying whatever he was playing with, it was if he didn't need to bother with moving about. Many people commented on his abilities of concentration and interest in something for long periods of time.

His anxiety and discomfort with the world around him became more apparent as we took him on outings and he became terrified of anything large that moved, was noisy or was unpredictable. We quickly learned that going places like the zoo, science museums, and really any large venue was so uncomfortable for him that they became off-limits and we stuck to the sanctuary and safety of the house. It was just too exhausting to do otherwise. He was miserable on these outings and we, in turn, were frustrated and disappointed with these attempts.

We muddled along like this for years, avoiding sending him to preschool for fear that the school environment would be too much for him to bear, and helping him learn to interact with his younger sister, of whom he had much animosity and jealousy. He was able to remember in amazing detail events that had happened years before, showing an ability to recall information that most kids that age lack. He was also extremely adept at perceiving other's emotions and excessively sensitive to those who exhibited sadness or fear, yet unable to identify those same emotions in himself.

When we did finally send him to Montessori preschool with his sister when he was 4/5 (we figured he would do better with her there with him), his difficult behaviors became even more apparent. Initially, he had major separation anxiety and issues participating in group activities like circle time. It was too overwhelming for him. He clearly wanted to befriend some of the boys his age, but he just didn't know how and his lack of ability at expressing himself emotionally and communicating with others made him frustrated and act out. This generally resulted in him hitting or biting. Oftentimes these behaviors erupted out of the blue simply because he got so overstimulated.

I lived in fear every day of the preschool calling for us to pick him up, or reporting that he hit another child, or bit someone or caused some other panic. Another issue was his potty talk, particularly when he became anxious. I dreaded the day I would get a call that he would be kicked out of preschool, but fortunately, that call never came. The school was willing to help intervene and see if there were accommodations they could make for him. They recommended having a public health nurse come and observe him in the classroom and make some suggestions, which ended up being somewhat helpful but they certainly didn't make many of the problems go away.

By this time, I was suspecting that something more than just anxiety was going on. His disinterest in kids and inability to interact with them were clearly flags. The nurse had recommended getting OT to deal with the sensory issues he was having and we got on the 6 month waiting list for that to begin. In the meantime, I arranged to have him seen by a pediatric neurologist for assessment. Given all the behavioral traits he was exhibiting I was fairly sure he had Aspergers, or high functioning autism.

It was another long wait to see the neurologist and we didn't get an appointment until the third week of Kindergarten. By then, he was already experiencing severe and debilitating behavioral and emotional issues with the transition to school. He was eventually diagnosed with a tic disorder, OCD, ADHD, anxiety and sensory disorder and was started on a medication to help with them. Again, the new school worked to help him and he made great improvements such that during his SIT meeting (Student Intervention Team), there was no recommendation for an IEP (Individual Education Plan) since he was doing so much better. The school year ticked on and, even though he still was having major social issues with the other students, he was managing okay. Behaviorally, at home, he was still extremely challenging and homework was an intense struggle.

Towards the end of his Kindergarten year, he started having more problems, this time with the OCD. He had experienced a few occasions where he had gagged on some food, the first time it was asparagus and the second on a tomato skin. He became obsessively worried that he would choke, to the point where he started refusing to eat or drink, fearing swallowing. He started losing weight and, even though I hoped this phase would pass, it was getting worse. We consulted with his doctor and eventually started having him see a psychologist to deal with the OCD and anxiety, doing cognitive behavior therapy as a treatment.

This last year, first grade has been both a lot better and a lot worse. He still has issues with hitting when frustrated or unable to express his desires. His anxiety was less at the beginning of the year but then he had a relapse with the OCD and eating, this time triggered by a bout of stomach flu and vomiting. He refused to eat and drink yet again and dropped weight quickly. When he finally started back to school again after winter break, his anxiety was extremely high and behaviorally, he was having more issues with his OCD becoming completely debilitating. It was absolutely miserable to watch.

We went back to the neurologist and he was started on another medication, this time for the OCD. No parent wants to medicate their child, but then again, no parent wants to watch their child waste away in front of them either, living in fear that you will have to admit your child because they are unable to cope with the world. The side-effects with SSRIs are always a little bit of a tradeoff, particularly as the patient is adjusting to the new medication.

"He seems much more relaxed and content at school and came back this week flawlessly." We initially were getting good reports from his teacher yet we struggled with the decision to keep him on the new medication because, while his anxiety is considerably lower and he's choosing to eat more food and a broader variety of food, the side effects are an increase in aggression and impulsivity and he's had more problems with getting in trouble at school for hitting.

A few months ago his teacher recommended another SIT meeting, this time because it has been difficult to assess what he is learning since he oftentimes refuses to participate in reading and is so rigid in his thinking that his writing exercises are unusual. This isn't surprising since he has obsessive thinking about whatever his current interest is, whether it be Legos, Egyptology or the like. All writing exercises end up being a variation on his fixation. At the SIT meeting we decided to pursue an IEP, to make sure that he would get access to whatever services would be helpful for him to succeed at school, most likely many of them being behaviorally based. He was already getting reading tutoring and doing a social skills club to learn how to interact and, basically, be a friend, but with a formal plan, those services would be enhanced, documented and carried with him from grade to grade.

We just recently finished the assessment process, with recommendations that he be tested for Aspergers, which comes as no surprise to me. The neurologist didn't think he had Aspergers, but he never did the formal, hours long testing. They also suggested having him tested for the advanced learning program, since he tested high in some subject areas and extremely high in spatial reasoning (98%). Must be all those Legos.

He still has coping issues with school as we try to find the right balance of medications and we've been dealing with the aggression issues as much as possible. Add to it the confrontations from parents of students who he is hitting and their thinly veiled threats don't exactly help the situation much. Between struggles at home and struggles at school, having a child with special needs is very emotionally and physically draining.

On the flip side, in spite of all our worries, our son is a tremendous joy, bringing an amazing intelligence, humor and perception into our lives. His intense interest and excitement is unmatched in most kids his age and, when he is in his element, he is unstoppable. His enthusiasm is contagious and his capacity for affection is enormous. I do worry for him and his future, as most parents do, but we can only do the best we can by him and advocate for him to make sure that he is as successful as he can be. He may not be considered "neurotypical", his brain wired a little differently, but then again, that is true for many of the greatest minds in history.

And, I hope that with patience, understanding and acceptance by students, parents and strangers, kids who struggle to operate in an oftentimes foreign world can achieve the great things they are meant to without being held back by ignorance or discrimination. So, on this day after Autism Awareness Day, I hope that the next time you or someone else sees a child acting up or acting differently, that you give both them and their parents the gift of understanding.

47 comments:

Robj98168 said...

Having met Henry last summer at the Blogger's Picnic I would have never known his difficulties. He is sucj a bright little guy! Thank you for sharing your story, Deanna, Very eye opening. and you are right, the next time I see a child acting up or acting differently, that you give both them and their parents the gift of understanding, I will remember that.

Eco Yogini said...

This is phenomenal. Thank you for sharing such an intimate part of your life. As a speech-language pathologist's we work with families and their children every day... but it's important to recognize that life is difficult.
We celebrated Autism Awareness Day yesterday at our clinic :)

Again, your post was awesome. I wish more professionals could be made aware.
Blessings!

knittinandnoodlin said...

Crunchy - I felt like I was reading my own story there...my younger son has Asperger's. Back when he first started displaying signs Asperger's wasn't the "sexy" diagnosis like it is today...so there weren't as many resources and his preschools/schools didn't know how to help (he was expelled from 4 preschools in two weeks because of aggressive behaviors).

I remember well how frustrating it was to wait 6 months to get in to see specialists, and worrying about him all day when he was in hospitalization programs, and being afraid to pick up the phone when his school calls. And, being afraid to leave the house with him because I was never sure how he would react when we got there -- and people's constant criticism that I needed to get my son's behavior "under control", especially as he got older, was upsetting enough that we just stopped venturing out into public beyond what was absolutely necessary.

Now that he is 10, I'm starting to accept that he isn't going to "grow out of it" and that with each age there will be new challenges (one thing gets managed, another thing gets wonky)...but by being consistent and loving I can be the anchor for him that he needs.

I'm glad you talked about your son's positive traits - all kids are different, but the intelligence and wit kids with Asperger's typically display is really amazing -- and I think God made them twice as charming to make up for the frustrating times. =)

Great post, Crunchy.

maryanne said...

Hi-I hear many echoes of our story in yours.Our son is 14 and has atypical Asperger's.In the early days of learning about this diagnosis, I got a lot of useful information and support from a website called OASIS(a forum for families with children on this spectrum).They also have a book available which in my opinion is extremely helpful- the 2 women who wrote it, and who moderate the site, are exceptionally knowledgeable about the syndrome, as well as being mothers of children with Asperger's.Parents share knowledge, support, let off steam and just generally know what it's like to be raising these great, but also at times, very challenging kids.
Best wishes- maryanne

Rosengeranium said...

Gee, that sounds like me when I was a kid. However, it was not as pronounced as your son, and I'm a girl, which means most of my aggression was turned inwards.

No, I've never tested for Asperger, though I've often thought I would. Especially since I have two friends that have tested positive for it and aspergerpersons tend to go along well with each others. If it is any comfort I'm doing quite well in life, as is one of my other friends (the second one is doing allright, but he messed up his life quite a lot before he had the diagnosis). Having an early diagnosis helps out tremendously, so I think your son is on good odds having a good life.

Red said...

As a parent of an autistic child, I can relate to so many of your issues.

My son is now going on 20 and he could not function on his own if he had to. In essence, if I died tomorrow all he would have is his 15 year old sister, who still get mad at him for things he cannot help.

I try to tell her the difference, but I think there are only things a parent can differentiate between. But most of the time his actions are an extension of his autism, not his unwillingness not to learn.

But when he does not even try to learn, I, in a very motherly way, remind him that he learned to make videos for YouTube, what the hell can't he learn to flip an egg. Silence.

Yeah, he learns what 'he 'wants and learns it well. But to his sister, that comes off as annoying and unwilling to learn. I can see her point.

He still has no friends and stick out in a crowd of his peers. But adults love him for his politeness and willingness to talk to them. He does not drive for he has issues with concentrating.

So I am looking into how he will survive if I should depart this lovely world. How would he function if he did not have a younger sister? These are all questions you ask as your special needs child grows older and cannot function like most his age.

Do you put him in a group home? Do you hope his sister takes him under her wing? And what if his sisters new boyfriend/husband wants nothing to do with her brother? Trust me, all these things go through your head a hundred and one times a day.

As tough as my son was when he was a child, nothing compares to the heavy heartedness I feel about his future and what will happen when I am gone.

My thought s are with you and your family.

Hilarie Mae said...

As a sister and niece of two loving and bright disabled individuals - THANK YOU! This was a great post.

Carmen said...

I really appreciate you sharing your personal story. I think your love for your son is so apparent in your pursuit of finding ways to make him happy and successful in life. If it weren't for people sharing these personal stories, everyone struggling with this would feel more alone.

We had some similar experiences with my own son (oldest), and after a few psychologists, doctors, and occupational therapists, he was diagnosed with sensory processing disorder. Just having the understanding of how differently he experiences the world is helpful to us parents in teaching him to cope and coping ourselves.

Thanks for sharing.

Anonymous said...

You are an amazing mother and an amazing woman. I completely admire you and your children are so very lucky to have you as their mom.

Alison Kerr said...

Crunchy, I agree with you, double the work can be double the joy :-)

If you ever want to look at homeschooling, there are a growing number of parents homeschooling special needs kids. From what I read it's especially applicable for kids with OCD, Tourette's, and Aspergers. School, with its cacophony of sights and sounds and all of the social stuff, which really isn't necessary IMHO for growing into an adjusted self-sufficient adult, can really be an unhelpful place for these kids, even with accommodations.

Sadly, I don't think it gets easier as they grow, it just changes. Few schools are equipped to deal with 2E (twice exceptional) kids, which is what your son is - both bright and disabled.

Anonymous said...

I have a 20 year old with Asperger's. He was given a preliminary diagnosis at age 5 with testing for confirmation at 7. It wasn't discussed then like it is now.

We home educated him because traditional schooling just wasn't working out. He "knew" too much, but couldn't emotionally keep up with the other children and all the commotion would cause him to shut down.

As a young adult he is doing well. There are still some significant challenges, but overall he is doing well. He has a job, saves nearly every penny (except those spent on books and sci-fi movies), and is joy to our family.

As knittinandnoodlin said--their intelligence and unique wit make them a joy and that's good because the challenging days are well, challenging.

Kim

Anonymous said...

"...when he is in his element, he is unstoppable."
That says it all. I'm glad others have mentioned homeschooling. If you could give your son an environment where he could be in his element pretty much all the time, he would SHINE. Why put him in a place where he is reminded that he is not normal all the time? Especially when it sounds like his intelligence puts him light years beyond what they can actually teach him in his age appropriate grade... just my two cents... Good Luck!

Beany said...

Like Rosengeranium...I could relate to Henry quite a bit.

Greenpa said...

Heavy stuff, Deanna. Parenthood is not for sissies.

My son, Beelar, at age 16, I think, looked up at me from some heavy hyper-urgent chore or other, that was stretching us way past where Navy Seals training would stretch; and said:

"Boy, from all the pounding and forging we get around here, the gods must be preparing us for something really big."

And grinned. He's been Type 1 diabetic since he was 8.

Sounds like you guys get more than your share of forging. But you're looking pretty shiny, there in the fire.

Brande said...

Wow! You are a strong woman, no doubt about that!

You may have already read/heard of it, but there's an excellent memoir on Asperger's called "Look Me In the Eye" by John Elder Robinson. It follows his life from early childhood through adulthood. If you have time, I'd absolutely recommend reading it.

anne said...

really inspiring. thank you for sharing.

Tami said...

Thank you for such an inspiring and intimate story!

I have a special needs son(19) and it has been a difficult road at times.... The OCD part has been the hardest, but we deal with new challenges each day and we know that he is a very special blessing to us!!

Sharlene said...

I have a son with special needs as well. He is in therapy 5 days a week right now and he is only 2 1/2. The word autistic is thrown around alot and I guess in time we will find out if he is indeed autistic. He has mild CP and majory sensory issues. He is so much work but he is also so much joy just as you metioned. Thank you for helpig those without special needs children to understand providing some comfort to those of us who are facing similar struggles.

JessTrev said...

Ahh...such an honest, loving post. Also love the images from the comments: twice exceptional - and forged in the fire to do great things. Thanks for sharing, Deanna.

Shannon said...

Somehow I can imagine the difficulty you are going through. One of my relatives is also a parent of a special needs child. Thank you for sharing your experience, I am sure that your post will not only raise awareness but also comfort those in the same fix. More power!

Child Safety News

Amy in Tacoma said...

Thank you for sharing so honestly about your struggles. I recently learned of this web site, managed and written by people with Asperger's (http://www.wrongplanet.net/), and the book, "Unstrange Minds," by a father of a daughter with autism (http://www.unstrange.com/grinker_reviews.html)

Kathy said...

Hi Crunchy,
A friend of mine pointed me to your post today and I'm so glad to have read it.
Our son is now 12, with autism.
I guess what struck me most about your post and your blog is how utterly apparent it is that you and your family have not allowed your son's disorder to completely define either you as a parent or your son as a child--- and what a handsome kid he is, BTW. ;)
So much good information on your blog... I'll be back for more!
Kath

Anonymous said...

A really thoughtful, insightful post.

Anonymous said...

Having had a child who was so sensitive to noise that he'd cry if someone talked too loud in the house, who needed speech therapy and help learning how to interact with peers, who had severe oral sensory issues (they are much milder now, THANK GOODNESS), I can empathize to a degree with your situation.

It's an experience I would not wish on anyone (the colic was the least of our concerns). And it opened my eyes to a more visceral awareness that what we see is not the whole story.

Best wishes for continued improvements with your son. He's got wonderful parents, and that makes such a difference in a child's life.

Thank you for sharing your story.

jewishfarmer said...

Hi Deanna - Lovely post, and fascinating. This happens to so many of us. In our case, we got the other version of autism - Eli is mellow, relaxed, sweet nature and incredibly tolerant - by far the most easy going of my children. But he can't talk at all, really, except for a few hard learned words for things he really likes (and they all pretty much sound the same unless you know him really well), and while he's bright (working above grade level in some areas) the fact that he has no language skills makes it almost impossible to convince other people of that. At 9 he's not toilet trained, and he has zippo common sense - he could easily wander out of the house and be lost in the woods, and would never be able to call out, even Scares the F*ck out of me some days.

On the other hand, half the time I think I'm so lucky - I have a wonderful, gentle, sweet natured, mischevious, funny kid who wants nothing more than to hang out with us, play in nature and dance. What's not to love? I'm very lucky - we've taken him everywhere since he was a baby and except for a couple of instances where his crazy soda fetish (we don't allow generally) caused him to try and take one from someone, we've had no negative criticism - but probably because Eli is instantly recognizable as disabled.

Anyway, it sucks and its wonderful - like a lot of life. I'm glad you wrote this.

Cheers,

Sharon

Renee. . . said...

Beautiful entry! Your son is fortunate to have such parents. And it sounds like he's a treasure in himself. I have too neuro-atypical children. No diagnoses but definitely lots of OCD and anxiety issues. Thank you for the frankness with which you address this issue. It strikes close to home for so many of us.

Anonymous said...

Crunchy,
Thank you for sharing your story. I am so impressed with how you described your son. I can tell that you really understand that he thinks differently than other people. Even though you don't necessarily have the ability to think the way he does, you recognize the need to understand and help him. I recently graduated with a degree in secondary ed, math. I am currently a long-term substitute in a special ed classroom and it is really a joy. Just this week I decided to go back to school to add a special education endorsement to my license. I'm glad you pointed out that we all need to be more understanding of others.
Good luck to you and Henry on this journey through his childhood and education. I'm confident you will make the best possible choices for him.

Anonymous said...

I have a lot of mixed feelings about this post. I'm 24 and have Asperger's myself, so does my brother (I'm higher functioning). Several of my cousins have regular Autisim. I really have to say though I can't stand when people think those who are "disabled" are "sweet", and "kind". I think the thing that is overlooked is the fact most people with Autisim can't see the value in backstabbing, or teasing another person.

Another thing that bothers me is when parent put their kids on drugs without their permission. I was put on an assorted cocktail of drugs in my youth, and made it perrfectly clear to my mother I don't forgive her for it. I developed liflong tics and other problems. If she had explained to me what the drugs were for,how they might help, and why she wanted me to take them, I would'nt have had a problem. My brother's the same way, although he's suffered worse in terms of side affects. Risperidone/Risperidal really should be banned, it does more harm than good. I've known a lot of people who have taken it and not one of them (or their parents) have anything good to say about it. I myself no longer take any drugs and everyone agrees I'm all the better for it. I can't stand the way some people say "well you haven't met my kid, he really needs these meds". That is often crap, I hate parents who try to control their kids behaviour so they don't have to be inconvieniced. I also have the idea that people think you have to get autistic kids into these "programs" if their going to have a chance. They do nothing but damage, no therapy was going to get my brother to speak before he was good and ready. I even saw a special on TV where these three autistic brothers had to do daily therapy, where the "teachers" did things like hold their heads to try to get them to look at them when speaking. The parents thought this was great! I wanted to hit the woman for the kid. But does that make me combative, if some one tried to hold your hand over a ho flame you'd hit too. It feels the same, it's a natural response to confrontation and percived attacked. I admit I still fight the urge to hit, but learned to just tell someone I don't know what I'm feeling and they fix whatever's wrong.

I also find that older people are more adept at sensng my emotions. That reduces conflict, and they're better at problem solving so I find them useful in a variety of situations. This is why most autistic kids prefer the company of adults, it really has less to do with patience than most think.

And for the record I held a job for over six years and completed high school. I only left to move away with my boyfriend who isn't "special needs", but holds a doctorate. I now run a household on my own and do a very good job. I have maintained this reltionship for over five yars with little to no assistance.

kyouell said...

Just found this post and I must say that reading all sorts of World Autism Awareness Day posts has made me grateful (sorta) for the fact that my son has Down syndrome. No one looks at us in the store and thinks that he's out of control, they see the Down syndrome and assume the little angel is just having a moment. Ah, if they only knew that our kids aren't little angels any more than any other kid.

Thanks for giving me something to meditate on. I enjoyed your writing and I'm adding you to my reader.

kpeao said...

Everyone has already said it, but thank you for sharing this. You were very generous to trust your story with us. My nephew has what I believe is Asperger's - but is undiagnosed. His parents do not want to discuss it. It hurts my heart to see them struggling. And like your son, my nephew is a phenomenal kid.

TheNormalMiddle said...

I have OCD and I'm a 31 year old adult, not diagnosed until adulthood. I've always been OCD, but my parents just refused (not in a mean way mind you) to address it. They thought I was just a highly nervous/anxious/worrisome child. My compulsion is worry---I find something to worry about when there is nothing to worry about. I also have a compulsion to find patterns with numbers. I cannot look at any number, anywhere (on an alarm clock for instance) and not look for a pattern. Most of the time I check to see if a number is divisible by three.

Okay, all of this said to let you know I'm a mom to 3 kids, I hold down a job as a teacher, and I'm able to function very well. Once I knew I HAD TO HAVE MEDS to fight this thing, I have seen positive gains. Some days are real struggles and I will never not battle this thing, but life is good. I wanted you to know that from the adult side of things.

Rosemarie said...

My only sibling (brother) is special needs -- no name, just learning disabled, ADHD, bi-polar, etc. Having lived with this all my life, I still can't imagine the patience and strength a parent must have. He just turned 30 years old.

Daisy said...

My 17-yr-old has Asperger's. it's a long haul, but he's learning to handle many of the anxiety and OCD components of it.

JenHarper said...

Thank you for that amazing article. Your son sounds a lot like my daughter. For the first few paragraphs, I could have sworn you were writing my story. Her case is somewhat milder as she doesn't hit other children at school. But the social awkwardness, the focus on a particular passion, sensitivity to overstimulation, they all could be about her. You have no idea how nice it is to think that I'm not alone in my struggle to bring up a differently-wired child to a happy loving adulthood. Good luck from all of us!

just ducky said...

As a mother of a child diagnosed with Bipolar Disorder, ADHD and ODD at the age of 6...I agree wholeheartedly with your request that people give kids and parents a break. Not every child who acts out is a result of bad parenting or a lack of parenting...many times there are psychological illnesses/disorders involved and you can't "see" those like you can with "traditionally recognized" disabilities...

I am a BIG advocate of the whole IEP thing. My daughter gets far more help now that we have an IEP and the teachers get less and less helpful as your child gets older (in our experience anyways). The IEP has given me the right to intervene in my child's schooling and make some of the less compassionate teachers comply. She occassionally does have wonderful teachers, but they are definitely mixed in with some burnt out teachers. Legally, the school has to work with and for my child because of the IEP. It has been a huge blessing.

I can relate as well to the the "living in fear of the phone call from school" thing... I won't go into all the down and dirty details, but there was a period of time two years ago that I got at least one phone call every week from my daughters' schools. It was depressing and stressful to say the least. Things are better for the most part this year...there are ups and downs, but still things are better.

It sure can be a long haul somedays, can't it? My husband and I just keep saying "If we can get them successfully graduated from high school---we can at least breathe easier." Although I envision my youngest daughter always having to live with us...the war over homework would then be over...

My thoughts are with you. Your son's special needs coupled with your husband's illness must be overwhelming at times. Add in your job and trying to be present for your daughter as well---and you've got a full plate! Thanks for sharing your story---it helps my own story feel a little lighter.

RC said...

I was at a loss for something to say or even think about this very fine post, Ms. Crunchy, so I decided to just read what your fan club had to say. I would second Greenpa's comment. I do admire you and the Mr. Crunchy's high fiber content. And I also wish to say "Le'go of my Lego"
{I know, it's a fractured slogan} to Henry. Happiness to you pal, and I hope you know how lucky you are to have such nice, though crazy, parents.

skymring said...

When I first came across your blog about a month ago, I told my husband about this cool american woman who threw all these incredible challenges, getting people to do more for the environment than they probably ever thought they could. 'She doesn't have kids', he responded. 'Wait, let me check', I said - 'no, she does, at least one'. 'Then at least she doesn't have a job', he said. 'Uhm - I'm not sure actually, but I do think she does - part time, I think'. He was impressed with what you had time to not only test, but also achieve around your home. I wonder what his reaction will be when I tell him that not only do you have two kids, but one of them has autism. I bow to you in respect!

the clothers said...

Have you heard of the Camphill Movement? I work in a Camphill Community which serves young people with special needs. There is a lot of wonderful literature on curative education for children with special needs which may help you and your son in the journey ahead. If interested, look up "Camphill Special School Beaver Run," and "Dr. Karl Konig." Many blessings to you and your family!

knittingwoman said...

Hi,
I am another reader who is parenting a special needs child. I do homeschool her but I also homeschooled my 4 older NT children. My daughter is 12 and has NLD, it has a lot of common characteristics with asperger's. She is developmentally delayed but very physically developed so she looks much older than she is and shehas neurological issues. She also has quite a lot of OCD behaviours. She is both a joy and an incredible amount of work.
I also want to add that it has gotten easier as she gets older but like another reader we worry about what will happen to her when she is legally an adult.

Knit2dye4 said...

Crunchy,
I, like so many others who have commented, have a child that is special needs. He has global apraxia and apraxia of speech, and did not talk until 4, after 2 years of speech therapy. He also was very colicky as a baby, and had feeding issues, which as he grew up, we realized were sensory processing issues. He has been seen by a neurodevelopmental pediatrician, and he does not have either autism or asperger's. He does have similar issues as your son in school, though, due to overstimulation. His principal and even his special education teacher doesn't have any idea what sensory processing disorder is, however, and are pushing me to have him put on ADHD medication. He is in Kindergarten, and academically is truly way ahead of the rest of the kids in his class, but can't seem to control his behavior. This causes unending problems with the school principal. It was heartwrenching and at the same time, a huge relief, to read about someone else's kid going through many of the same things. Thanks, Crunchy, for a lovely post.

Lauren said...

I'm not sure if you have heard about wheat gluten being a factor(or can be), it is different if it helps for each child...

Donna said...

I really appreciated this post -- I read it through twice. I could relate to most of what you described except that the behavior is much more mild in my 4-year-old son. Ahead in academics, behind in maturity, he started preschool two months ago and I now know the feeling of living in fear of the phone call from the school. He's like Henry in his incredible memory and obsessive interest in whatever is his current interest, and also in the delightful enthusiasm. Our son is the joy of our lives, but we've known since he was a baby that he was just a little different from other kids. I still don't know exactly what that difference might be or how much of a challenge it will be to deal with as he gets older.

Thanks so much for sharing your story. Even though I know better, I've been feeling like I was the only one who ever had to deal with this. You changed that.

LisaZ said...

Wonderful post, crunchy. As you know, many of us are in similar boats.

Moriah said...

I couldn't read the whole thing. This brought tears to my eyes. I'm a 20 year old girl and found out at age 16 that I had ADHD. I had done okay in school but adults always noticed how I was friendly around them, not talkative but polite, and how shy, awkward, and wierded out I was around other kids. Of course I wasn't in quite the same situation as your son.

He is special, and he should be aware of that, but the most important thing is that you don't let that be an excuse! Not for other people, especially teachers and other parents, who may try to stop him, not for him to use for himself. I wish you the best in your parenting, and most of all that he and his sister have a happy and healthy relationship their whole lives. I know that can be rough but it's not impossible.

jmelyn said...

Love that little Henry. He gives great hugs.

Miss you guys, best wishes and love to you.

Airienne said...

After reading this post, I don't feel like I'm the only parent going through the everyday challenges of having to raise a child with autism. This article gives me hope and strength not to give up.

Mrs. Mac said...

I got so much from reading this post. Knowing that I'm not the only mother that struggles with similar issues with our youngest son. He has so many of the same behaviors your son has .. though not autistic .. he does have Down syndrome .. on top of his environmental sensitivities. Thanks for sharing!

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