October 2008


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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Hello!  I am so pleased to be introducing myself to you here at the Lots of Kids-Special Needs blog!  My name is Missy (MomZookeeper) and I live in central Kansas.  My dh is Brandon, and we have a house full!  We have 7 legally adopted children, all adopted from foster care.  We also have 1 informally adopted older daughter and 2 former foster sons who are still “ours at heart.”  All that brings us to a grand total of 10 so far (5 living at home still)!  AND we are already working on grandchildren!!!  We love our life, we are firm believers that God has created this family and continues to do surprising things here.

While dh and I are only in our early 30s, we have been doing what we do for over ten years now.  Currently, we homeschool 4 of the 5 children who are left at home.  Most likely, we will homeschool all 5 of them within the next year (we are leaving one of them in public school as we complete her adoption process).  Homeschooling 4 children with VERY different levels of ability and attention span can be quite interesting!

We have 3 children who are classified with “mental retardation” based on their IQ and school testing (which I despise) and have spent a significant amount of their time in special education at public schools. We also have 7 of the 8 kids who have significant attention problems, either diagnosed ADHD, ADD, or strong symptoms that would lead to a diagnosis.  We have worked with children who have learning disabilities, dyslexia, attachment issues, attention problems, and even more severe psychological and emotional disturbances.  We are also now dealing with transitioning some of our children with special needs into adulthood.  All of this, at my age, is a bit overwhelming, but I have learned a few things over the years.  I also find that it is so much easier to walk through difficulties and life in general when we have others with similar experiences to share it with.

Most of all, we rely very firmly upon our faith to carry us through.  My writing will probably always be tinged with the importance of my faith while I parent all of these children.  Were it not for my faith in a God who created all of these children and has brought them all into this family, I could NOT get up each day and do what I do.

So, I’m excited about sharing with everyone the “ups and downs” and “ins and outs” of life with all of these children!  I’m a bit eclectic in my approach to writing, writing whatever “the Spirit” leads!  🙂  I do enjoy hearing from readers, so please leave comments!

I will leave you with a list of my beautiful family members, and close for now!

  • Brandon (35) my dear husband
  • Missy (33) ME
  • Crystal (22) our informally adopted daughter, engaged to Shane, mommy to Cayson (3mths) and #2 on the way in May 2009
  • SueAnn (20) legally adopted in 2007 at 18, engaged to Gary, soon-to-be stepmommy to Tiana (2yrs) and Danny (1yr), and expecting baby #1 in May 2009 also!
  • Dean (18) adopted in 2001 at 10, currently in a juvenile correctional facility for trouble, LONG story of about 5 years of ups and downs with him, ADD, ODD, PTSD, CD, RAD, Bipolar, you name it?
  • Thomas (17) adopted with sister, SueAnn, in 2007 at 15, homeschooled, developmental disabilities, learning delays, ADHD, nervous tics (mostly resolved), and a very HAPPY, friendly, loving kid!
  • Corly (16) adopted with brother, Dean, in 2001 at 8, homeschooled, ADD, learning delays, and some emotional/psychological issues, a very hard-working, responsible young lady, learning to DRIVE and hold down a job and keep life all-together (not an easy task with severe ADD!).
  • Kevan (13) adopted in 1998 at 3yrs old, homeschooled, severe ADHD, developmental disabilities, learning delays, biological sibling with Thomas and SueAnn, attachment issues even after 10 years, but overall, a sweet boy, loving and sensitive, who just gets into a LOT of mischief!
  • Skylar (7) adopted in 2002 at 9mths old, homeschooled, attention problems (not diagnosed), a very smart and loving child whom we have had the joy of calling our baby for almost 7 years now!
  • Cary (6) recently adopted (will be final in 2009), public school 1st grader, blond-haired, blue-eyed cutie, she’s funny and lovable, yet a little scared and shy and still adjusting to being a member of such a large family!
  • Our two former foster sons, Cameron (3) and Issac (18 mths), now live back at home with their mommy and are doing well!  They both have some developmental delays, mostly fine motor skills, language and some gross motor skills.  They are thriving with the stability of being back home with mommy, though!  We’re blessed to have been a part of their lives.

Have a blessed Friday!

-MomZookeeper (aka Missy)

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.

You think with running as many blogs as I do, I would be good at this. But alas WordPress is giving me fits. We have moved our Mega-Moms blog from LiveJournal to WordPress and are having a dickens of a time getting new group members added. That is spilling over into this blog, as I struggle to get my accounts all working right and together. So, we haven’t forgotten this blog, just trying to get things to work right. Though, you’d think as a mom to special needs kids, I’d be used to thing not working the way they are supposed to. Sheesh! Anyhow, we’ll be up and running again soon, so check back.