Having a non-verbal child is a challenge under most circumstances. I happen to also be “blessed” with a child who refuses to use PECs or sign-language, because he *knows* that the way to communicate is to speak–and wants to do that, even though he can’t speak much due to his disability. As you can imagine, that makes fulfilling his needs even harder. Not to mention making it harder to educate him. For years we struggled with the schools, as they insisted it was our fault he wouldn’t use PECs, even though we tried and would have welcomed an easier way to communicate.

We are very fortunate that over the past few years, Raif has managed to pick up enough words to communicate some of his wants. We have also gotten very good at tailoring “yes or no” questions so he can give us an idea of his desire when he can’t outright tell us. Multiple choice questions also encourage him to “use words” to clarify his preferences. One of the funniest things is his use of canned-phrases to let us know signify his wants. I can’t help but laugh when I ask him if he wants soup, and he’ll answer with “Mmm, mmm, good.” Reminds me a lot of the character from Batteries Not Included. Remember that movie?

Despite advances on the communication front, one thing that has not changed much over the years is Raif’s inability to tell us if he is sick. It’s easy if he is running a fever, or has such severe pain that it’s obvious he’s ill. However, a lot of the time when Raif is sick, we don’t realize it, and more importantly, he doesn’t realize it. I think we have all been there, where we feel off and just can’t really point to what is ailing us. Perhaps a tickle in our throat, or a dull ache. Those are the illnesses that perplex my son, and which cause us a lot of trouble.

After a long period of doing very well in school, Raif became violent the other day. No one could really understand why. After a look-over by the nurse, they noticed his throat was a little red. Pain can make Raif feel off and get aggressive. He wasn’t running a fever or anything, but we decided to take him to the doctor. Turns out he had an infection and was put on antibiotics.

Even with a severe child, I think we still take it for granted that if your child is sick, he/she will let you know. Even for Raif, if he is in a lot of pain, will come and take our hand, placing it on his ear or other place it hurts. General illnesses, and even things that are overtly painful like a sore throat, are abstract and perplexing to our son. There are times we’ve suspected he’s suffered weeks without us knowing, until the illness (or his aggression) go so pronounced it was obvious something was wrong.

When we told Raif that he was going to the doctor, he was happy, and then proceeded to coughing hard and moan. He continued this over-exaggeration the whole day and through his visit at the doctors, even though everyone kept reassuring him he didn’t have to act sick for the doctor to see him. It wasn’t until after the fact that I realized in Raif’s head, *that* is what he equates illness with. Even if he feels bad, if he does not see those physical symptoms in himself, he may not realize he is truly sick–despite the fact he feels bad enough that it comes out in the form of marked aggressiveness.

Thankfully, the doctor and nurses were really good about the whole situation. We got Raif into see the doctor quickly, piggybacking on an existing appointment we had for two of our daughters to get a check-ups. Again, in Raif’s mind, he saw his siblings getting shots and immediately felt he needed a shot. In fact he got so worked up about it, he pinched himself in the arm when he didn’t get one. He was consoled when the nurse gave him a band-aid that matched his sisters’.

I hope one day Raif will be able to tell when he is sick, and let us know, even if it is him simply saying “sick.” Until then, it just adds another role of “medical detective” to our resume as we have to look out on our own for the signs when he is not feeling well. Which is not as easy as it sounds, because our son is smart enough to know how to FAKE being sick, even if he isn’t so astute to always know when he is truly ill.

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Just an introduction from this newbie…I am Danielle.  I am 33 yo and live in Texas.  I have 5 children and am currently expecting #6 in January.  Dh is Isaac and the kidlets are …Marisa, 13; Jordan 10; Christian 9 – HFA; Adrian 7 – PDD-NOS; and Dominic Francis.

Our story starts in 2001.  We had our fourth child in January.  We thought things were smooth sailing.  We had 4 beautiful children and I often thanked God that my children had no medical issues.  Well, that was about to change.

Adrian was born at home and since he was healthy, I did not rush to take him to see the doctor.  I noticed there was something odd about the shape of his head and did not like the way hats looked on him.  I thought he was just odd.  I took him to the doctor at 8 weeks and the doctor noticed his head shape right away.  Otherwise healthy, the doc sent Adrian for xrays of his head and called me later to tell me Adrian was born with dolicocephaly.  I went online like we all do when some weird name is associated with our children.  I found a wonderful website, but it sure scared me.  I saw surgery mentioned over and over.  I found that dolicocephaly was also, but more commonly, referred to as sagittal craniosynostosis.  It meant that he had no soft spots where they are supposed to be.  His head grew oblong like a footbal because it could not grow round.  So, basically the bones in his head had fused prematurely.

Well, the doc gave us the info and sent us to a neurosurgeon in the area.  In the meantime, I joined that website and ended up with a support buddy who had been through the surgery with her son.  We met with the doc and he spke about a surgery to remove the fused bone and put him back together.  There would be no reconstructive surgery to fix the shape of his head.  We set a surgery date in May of 2001. 

While we waited, I met irl this woman and her son who were my support.  She spoke of a great team of doctors who had done her sons surgery.  I was so impressed I got the phone number and called the office.  I asked them if they took our insurance and they did.  I was going on the notion that if God meant this to be it would work out. 

I poured out my story to the lady who answered the phone.  I told her we were within a few very short weeks of surgery, but I wanted Dr. G to see him for a second opinion.  She did the unthinkable…she set us up for an appmnt within a few days.  Let me say that when you see specialists, generally, you wait months (or atleast weeks) to get in to see them.  It had taken us over 4 weeks to see the other doctor.

We met with this new doc and I had pages of questions written out on my legal pad.  Basically, the surgery he performed was in cooperation with a neurosurgeon.  He was a craniofacial specialist (read: reconstructive surgery).  The neurosurgeon would remove the fused bone and then Dr. G would come in and take out the back 2/3 of Adrian’s skull and break it apart.  He would then put it back together in a round shape with absorbable plates and screws.

I talked openly with this doctor about our appmnt in about 7-10 days and because of dh getting laid off and his severance package covering us financially for a bit.  We needed to get the surgery taken care of so I could stay in the hospital with the baby and he could take care of our other children.  Most docs would wash their hands of it and talk about scheduling difficulties.  Well, this doc went to his surgery scheduling coordinator and came back in a few minutes and told us that he could probably do the surgery the day before the scheduled surgery with the other doc.  Because of having to schedule 2 docs for the surgery, before we left we found we would have to wait a few days after to have his surgery.  It all worked out!!!  I was so relieved.

Well, I know this story has gotten long and I hope that I don’t lose readers, but there is soooooo much more.  One of the questions I had for this doctor was about the possibility of a second surgery for our son.  He said that most children do not require a second surgery.  He even gave me the percentage of his practice and it was low. 

Adrian had surgical followups within the next few months and it was determined that he WOULD need a second surgery.  Six months almost to the day, Adrian had his second surgery.  It was the week of Thanksgiving and we spent Thanksgiving in the hospital.  Dh had found another job and we were blessed for dh to have been able to work part time that week for the holidays and family helped out with the other children.  We had trays of turkey dinner in the hospital. We were so thrilled that everything had worked out.  We were told that NO ONE needs a third surgery.  We were quite happy with that.

Before Adrian had his second surgery, I had a few very nice ladies point out to me (online) that my third child Christian was maybe needing some diagnostics.  I guess I told a few stories about him that threw some red flags to some mothers of autistic children.  I called to have Christian eval’ed by a neurologist.  Well, that appmnt happened about 4weeks after Adrians second surgery.  Adrian was still swollen in his head from the surgery that day. 

I took all four children by myself to have Christian eval’ed.  Christian was already receiving services from ECI.  He was not 2.5 yet.  Before we left the docs office that day, he was dx’ed with pdd-nos.  That got me going.  I called a few places and made him some appmnts with some developmental peds.  He was never given the autism dx.  It seemed t me that most peds were afraid of hurting us and were very happy to leave his official dx with pdd-nos. 

I was unsure of having him evaled by the sd.  We were hmeschooling at the time and I was sure he would be fine at home.  By the time the summer ended, I had changed my mind.  I contacted the sd and set up evals.  When we met with the psychologist, I was aware that I might need to convince her that I knew he was autistic and I could handle the dx.  I took the diagnostic criteria with me and pointed each one out to her and how I was sure that he had enough t dx him with autism.  We left the school that day with a dx of High Functioning Autism.  

I think that may be enough of an intro for today.  There is so much more.  There is the fight we had with the sd and that we went through mediation with them.  There is also our son Adrian being dx’ed with pdd-nos the next year.  That will certainly come later.  I am glad to be here and I hope that I can post enough.

I was on the forums at Lotsofkids, and someone posted a link to this article:

SN Child Voted Out of Classroom.

The first reaction of most people is to be appalled. And I have to admit, this is a very upsetting situation and I do not feel it was handled well at all. The teacher does deserve some sort of disciplinary action. However, I don’t believe this was criminal and I don’t believe she deserves to lose her job. This situation is simply casting light on another issue, and one that I feel we are going to be seeing a lot more about–good and bad. It is about a growing trend in education which is turning out to be a double-edge sword.

In an effort to be “inclusive” more and more special needs children are being put into mainstream classrooms. These children, who would have been put in a special program in the past, are being placed into regular rooms with 20+ students. Problem is, teachers are NOT being given training to deal with special needs children. They are simply being told to deal with it. Granted, most schools do have a special-ed team member they can confer with, but in the trenches, day-to-day, the teachers are on their own.

This just boggles my mind. Even trained professionals and parents can have hard time with these kids, and they have experience. Seasoned teachers are struggling with this. What about a new teacher, fresh out of school, just getting her feet wet in teaching? Put a difficult SN child in his/her classroom and it’s a recipe for disaster.

Integration is not new, but it’s the hot trend right now, and more and more districts are jumping on the bandwagon. While I can understand the benefits, there is a rush to push *everyone* into a regular classroom. This is just not a good thing. I fought with my school district about it for years. They wanted my son in a general classroom. This is a child who is, for the mostpart, non-verbal. He requires a 1-on-1 aide, plus he has to have special intervention throughout the week. He has to have behavior therapy because of his aggression issues, which are sometimes directed towards students and staff. He can disrupt his class of 10. I can’t imagine him in a room of 20 or 30! And yet, I still hear in meetings, “don’t you look forward to the day he can enter a regular classroom?” Um, no. Granted, in my dreams I would love to believe he would be able to get to that point. But I am realistic. I truly don’t see that happening. I think some of these schools need to realize that too.

My sister is a 2nd grade teacher and she is dealing with this situation now. She gets 1 to 2 kids a year who are SN and it causes a lot of problems. The other students do not understand that the child’s behavior is not his/her fault. Because of privacy issues and such, my sister cannot really tell her students what is going on. She just has to say the SN child is “different” or having a “hard time.” That doesn’t really help the kids understand, and just makes things harder for her as a teacher. My sister constantly complains she does not have the knowledge of the strategies to deal with some of the behavioral and learning issues these kids have. At least in her case, she can come to talk to me about these things, so she has someone who can give her some perspective. Many teachers don’t have that at all.

Getting back to the news story, I truly think it’s terrible that this child had to go through that. I also think it’s terrible that the teacher set such an example of intolerance for those other children. But, knowing how hard these kids can be to deal with, is she truly to blame? I actually had Raif’s kindergarten teacher call me on the phone and scream at me, telling me she thought Raif was pretending to be “retarded.” She insisted because he was intelligent, he must be normal, and any acting out was deliberate. Any parent of a SN child realizes this thinking is so misinformed and wrong. However, it should be noted this was a woman that had a 3-month crash course in special education before being thrown into a classroom with a dozen kids with varying degrees of special needs. She knew little to nothing about working with these types of children. Granted, at the time I was infuriated at the woman’s insensitivity, but I realized that the school system had a good deal of blame too.

I can truly understand the idea of integrating children. “Blended” classrooms are important. There is proven facts that when SN kids are exposed to regular children, they make advancements therapy just can’t accomplish. They see what is appropriate behavior. They learn by the example of their peers. It is good for NT children too, because they learn to how to relate to those that are different than them. The difference is, in what is considered a “blended” classroom (at least in my state) means that the teacher has training, and there is usually one aide in the room for support. So many of these teachers in general classrooms who are receiving these moderately SN kids are just not equipped to handle it. Not to mention, that there is a difference between putting a high to mid functioning child into a classroom, as opposed to a child who has more significant issues.

There is no easy answer to this. My only hope is that eventually schools will come to a middle ground. Yes, integration is good and important, but not every child will benefit from it. And despite my desire to have my child included, I have to respect that the NT children’s needs need to be considered too. I hope, in the end, someone will come up with an answer. Until then, I fear the situation mentioned in the story is going to just be one of many.

I think one of the hardest parts of being a special needs mother is not in the actual parenting, but being the parent. Parents of special needs kids tend to be under far more scrutiny than parents of normal kids. That is due to the sad fact that special needs individuals are oftentimes hurt or exploited more easily. Still, it’s unfortunate and unfair that parents who have the challenge of caring for a child must also be punished in some ways by being held to a higher standard. This is even more difficult for the parent of a child who is abusive and self-inflicts injury. My normal child can fall down and scratch themselves and it’s okay. Presumably this is because they can tell their teacher what happened. If Raif does that, there are calls from the school, notes sent home, and letters from us explaining what happened.

Recently we cut Raif’s hair. Anyone with an autistic child knows how fun that can be! But I’ll save that for another post. Anyhow, Raif has a big issue with the little pieces of hair. They itch him. Heck, they itch me! They bother Raif so much that at one point he bolted out of the chair while I was buzz-cutting him, and went and ran his head under the water faucet. During the same session, he also ran into the bathroom, half-shorn, stripped off his clothes, and jumped in the bathtub. When we finally managed to finish the job, nearly 45 minutes later, he did shower. Apparently, even after hosing off, his neck still itched and it bothered him enough to scratch and draw blood. We got a note in his bag from the nurse about it. I should note, the scratches were so small and minor, we didn’t notice them until we were asked about it. I know it’s standard procedure to question all injuries, but the fact of the matter is when you get a letter from the nurse inquiring about something like this, it’s upsetting. Particularly when it was obvious Raif’s hair was just cut and you could put 2 and 2 together. You realize that despite the obvious, the fact that you have a special needs kid creates doubt. Since it’s known parenting a child can be overwhelming, there is the presumption that abuse can and will happen. When you get a note or a call questioning, it’s uncomfortable, even if you’ve “been there-done that” 100 times before.

I remember the time Raif’s first grade teacher called me on the phone and accused me of beating Raif because he had black and blue marks on his forehead. Despite the fact that he had page after page of documentation in his record noting his severe head-banging. Thankfully there haven’t been a lot of calls or letters over the years, but enough that it makes the challenge of being a special needs parent just that much harder.

I know it’s just another thing. One of many. Usually I’m okay with it, but going through other personal trials, it’s another thing on top of the pile that I would rather not deal with right now. It weighs on a person, knowing that somewhere, someone is wondering if you are abusing your child. Even if they say they are okay with your explanation, are they really? The best you can do is give your explanations, follow up with letters to the file (something I think is very important), and continue to do your best to be a good parent. That’s what I do and what I will continue to do. It’s still hard.

I’m a normal person. In special-needs speak, I am NT, which means “neurologically typical.”  It means that I am like the majority of the population, a person whose brain works in the traditional manner.  I am married, however, to someone who is ASD. More special-needs jargon. That means “autism spectrum disorder.”  In years past, autism was pretty much relegated to the type of person that Dustin Hoffman portrayed in the movie Rainman.  I have to admit that my only exposure to autism prior to adulthood was a child who was the son of my father’s employee.  I remember he had the odd distinction of eating loaf after loaf of bread by taking one bite out of the center of each piece and throwing the rest away. Nowadays, it is known that autism covers a wider area, and there is a greater umbrella over the people who can be classified as autistic.

My husband is an “aspie.” He has never been formally diagnosed, but in the path to discovery of my son’s issues, Jim found answers to many of the mysteries of his own life.  When researching autism for our son, Jim saw himself and gained clarity.  It was emotional, but something that liberated him, and quite frankly shored up our marriage as I was better able to understand the intricacies of my husband’s behavior–some of which were, quite frankly, driving me crazy!

My son, Raphael (whom we call Raif–which is pronounced like the name “Ray” with an f at the end), is a full-blown, low-functioning, severely autistic individual.  He is 11 and on the mental level of a 3 year old.  Speech-wise, he probably comes in around 2 years old.  He didn’t potty-train until he was 8.  He speaks very little, and it’s rarely social, mostly just to communicate his wants and needs.  He will express concern and empathy, but that’s a relatively new thing for him.  He is content to spend hours doing one thing or another, and if his needs were met in some other fashion, he might go days without human contact and never notice.  Autism for him is not a mere hinderance, it is a debilitating thing that controls his life.

There has been a lot of talk in recent years about people embracing their autism.  Temple Grandin, a renowned animal behavioralist and autistic herself, makes it clear that she feels that autism has its place in the world.  High-functioning autism, that is.  The Aspies of the world are generally the engineers, the scientists, the computer programmers.  While those people struggle, they are still able to function.  Many of those people don’t like the label of “disabled” because they don’t feel they are.  In fact, like my husband, many of these people never realized anything was “wrong” with them until recent years when awareness of ASD grew.  There is the idea that trying to fix something that appears broken is not necessarily the right thing to do, because maybe it’s working fine afterall.  Grandin acknowledges, however, that all autism is not good.  Research must be done, and a cure found for the severe cases.  However, there needs to be a line drawn and a distinction made as to what constitute disabled, and what is merely being different.

I sometimes feel trapped in this world of autism.  I live with it day to day.  I can see the points of view of both sides.  I love my husband, and know deep down that much of his mathematical and computer brilliance comes from the way his brain is hard-wired.  I’m not so sure he’d be quite where he was if he didn’t have Asperger’s.  On the other hand, I also see him struggle with social situations and other aspect of daily life that I take for granted.  Would he trade one for the other?  That’s a tough call, but it’s one that he would have the luxury of making since either way would not greatly impair him.

Yet with my son, I would readily erradicate autism in a heartbeat.  To have a conversation with him, to have him function, to see him doing what other 11 year olds his age are doing would be far worth it. I know that without it he would be a bright, loving child. I am sure if I gave him a choice, if he could understand, he would choose that path too. Freedom from autism.

Either way, I am resigned to the fact that autism is a part of our life and will remain so.   I have accepted that learning to live with autism is what we must do. Acceptance doesn’t equate giving up, as some would argue.  It means that you commit yourself to doing the best with what you have.  It’s not always easy.  Heck, most of the time it’s not easy.  But sometimes it’s all you can do.

So where does that leave me?  With my husband, I embrace autism.  With my son, I detest it and strive to defeat it. There are no easy answers, and I have to wonder if the world was so much better off widening the umbrella.  Has it taken attention away from the severe cases who need to be the focus, and instead placed that light on those who don’t need it or want it?  I don’t know.  Either way, I’m stuck in the middle, which is never really a good place to be.