Reflections of 2011

As 2011 comes to an end, I reflect on the year and look forward to a new one.  Looking back on the year, we had many struggles.  So many things changed for us as a family due to the struggles that Andrew is faced with.  It all started in January.  All three of my children were still recovering from the flu.  Andrew began wearing his first set of AFO's (braces-ankle foot orthotics).  By January 10th he suffered a significant burn from a warm-mist humidifier.  He is still currently having issues with these wound areas.  He received 2nd-3rd degree burns over about 9% of his body.  The neurologist began investigating to find out more of what was going on with Andrew.  After tests and procedures to rule out some things, it was discovered that he was having multiple seizures during his sleep.  During this same time he also received diagnoses of Autism and a sleep disorder.  This year Andrew and I have had very little sleep.  His behavior changed so drastically that he required medication to help.  We began the year with one medication and now he is taking five.  All the while, some close extended family became more and more distant and did not want to hear about Andrew's condition.  They wouldn't even call to check on him when he had been in the hospital and under anesthesia to have testing done.  Out of all of our family we have two who really take an interest in Andrew.  I'm very grateful for them.  I'm also grateful for the support we have received from friends and our church family.  Thank you to those that have given us that support through encouragement, acceptance, and prayers.  Please continue them through 2012, we really need it!

Things I've learned this year as a special needs mom:

• God only gives us what we can handle with the support of others.  You can very well have more than you can handle without that support!
• The little things that use to matter or bother me, no longer do.  I no longer have time to worry about what I call the petty things in life.  I have a much more important task at hand that consumes a lot of my time.
• I'm only human.  We all have our breaking points and I discovered mine.  This doesn't make me a bad mother, just human.  As a special needs mom, we have to go above and beyond the typical mother.  There are times that we can only endure so much.
• It's okay to cry because of my job as a special needs mom.  It in no way means that I resent Andrew in any way nor do I love him any less.  Just like other special needs moms, we didn't choose this nor did our precious children.  I use to feel guilty about being upset over the situation.  I use to tell myself the situation could be far worst.  Then I realized this doesn't change the struggles that we are dealing with.  No matter what situation you are given, it could always be worst or you think of someone else who is going through a more difficult situation.  I use to do this instead of allowing myself to grieve over the loss of what might have been.  I discovered that this is not healthy. 
• I have learned to say, "Why not me?," instead of, "Why me?"  I'm no different than anyone else and why would I be exempt of the possibility of this happening.  Let's face it, this could happen to anyone and has happened to many others.  I'm in the minority, but not alone in the situation. 
• Discovered that people I thought would never discriminate against someone because their abilities are different..will.  We have a long way to go as a society for acceptance.  There are still so many stereotypical views towards those that are developmentally disabled.  Being able to do something that someone else can't doesn't make you a better person than them, nor does it make them less of a person.
• Acceptance.  I have come to fully accept and realize that my life is different and I won't be able to have the life of a typical mother.  I embrace it and focus on what I can do to help Andrew and my other two children that are on this journey as well.  We very seldom all go into a restaurant, even fast food.  It has to be a drive-thru.  Date nights are very few and far between for me and my husband.  We don't go to movie theaters or entertainment outside the home.  My 12yr old visited the movies once this year with her grandparents.  But, it's okay because we spend a lot of time together as a family.  There are a lot of family movie nights in our home.  Even our family vacations are different.(I'll talk about that on a later post)  However, I'm completely okay with all of this.  These things are far from the stresses of caring for a special needs child.  If these were the only things we had to change, it wouldn't be that hard.  I miss some of these things from time to time but they do not cause me the stress of having to deal with all of the other things that come our way.
• Andrew will develop on Andrew's time, not when the experts say a typical child develops.  This is what makes him special.  He can offer just as much to others regardless of where his development goes.  He has already proven this to me.
• Patience.  I have far more patience than I thought I ever would, but it's still not enough.  I have discovered my level of patience through this journey.  Andrew and my other children deserve all the patience in the world, however I'm just not able to provide that for them.  I just hope that they forgive me someday for the times that I didn't have the patience they needed.
• Special Education Laws.  I never imagined that I would have to educate myself as much as I have on all of the Special Education Laws.  This has been necessary to ensure that my boys receive their education according to the law.  I breaks my heart to see the other children that don't have anyone to come in and advocate for them to ensure that they receive the same opportunities.  If parents don't take the time to educate themselves on these laws, sadly the children do not get properly served.  Most parents assume that the schools will automatically provide an appropriate education according to the law.  This is far from what actually takes place.  Most of the staff within the school, including the special education teacher, are unaware of what the law says.  I have found myself educating staff including administration on what the Special Education Laws are.  I'm amazed that it is not a requirement for all those working in special education to be educated on the Special Education Laws.  I would like to see reform in the Special Education program that requires all schools and school systems to follow the law without the parents having to be the one to notice and speak up when it's not being done.  There needs to be some checks in place to ensure that all children in special education, regardless of their background, have the educational opportunities according to the law.  Our typical children automatically get this, why should our special needs children be any different. 
• Sleep.  I never knew how much sleep Andrew and I could go without until this year.  Sleep is something I'm desperately hoping for in the new year for myself and Andrew. 

Through all the struggles of 2011, I am thankful for the knowledge that we have gained thus far in regards to Andrew.  There is power in knowledge whether it allows you to change the situation or not.  Knowledge allows me to be able to better care for him. Sometimes it's the unknown that can be the most difficult.  I hope we gain even more knowledge about his condition.  With so much uncertainty still at hand, I find it hard to give him what he needs.  Just like any other parent, I want to make sure that I have done everything possible to help my son.  When a parent realizes a need their child has, they will do everything they can to provide that for their child.  I'm still trying to find out what all he needs so that I can actively pursue meeting those needs.~~Have a wonderful New Year!

Well Child Visit....

This is what most of us would call a yearly check-up with our child's primary doctor.  As a special needs mother I dread these visits with Andrew.  We recently had one a few weeks ago.  I am very aware of Andrew's delays and where he is in comparison with his typical peers.  I have worked really hard not to dwell on those things and not compare him to other children.  I just focus on him and his progress or lack of.  However, the receptionist handed me a form to fill out in regards to his development.  It was only a series of questions and you simply answer yes or no whether or not your child can do what they are asking.  Then, under each group of questions, it asks you if you have any concerns regarding your child's development in this area. 

This was very hard for me.  As I was going through the questions and marking the answers I wanted to sit there and just cry.  I couldn't answer a single yes to any questions at all, except for when it asked, "Do you have any concerns regarding your child's development in this area?"  I wonder what they would have thought if I had answered no after marking no on all of the other questions.  He wasn't doing anything a four year old should be doing in any area of development.  This isn't something I didn't already know, I just try not to think about it that often.  When you actually see it on paper staring at you, it brings you back to reality that your life and your child's is far from typical.  We don't share in the same activities as most parents do with a typical four year old.  Andrew is over 60% delayed in most areas and 75% delayed in communication.  He can't pedal a tricycle or maneuver a ride on toy, no coloring, no pretending, no running or jumping, no back and forth play with toys (he prefers to play alone with the few that he plays with), and the inability to put his arms around me for a hug.  Don't get me wrong I love the cuddling he does, tickling him to hear his sweet laugh, the big beautiful smile he gives just by simply looking up at me, the fact that he would prefer to just sit with me all day, and how he gets excited over the little things.  However, I still miss all the things that parents get to do with their typical children.  I usually don't focus on those things, but this particular moment brought it all back to me while answering those questions. 

It would be nice for parents like me if they would flag his chart so that we are not asked to fill out these forms regarding development.  I understand that these are needed so that a problem with development can be caught as early as possible.  They just aren't necessary in a situation like ours.  They are already completely aware of Andrew's development.  If they only knew how hard this is for a special needs parent in a situation such as this.

The visit with the pediatrician wasn't quite as bad, except there wasn't really anything positive discussed.  It was about therapies, muscle weakness, curved tibias, seizures, sleep issues, behaviours, allergies, medications, very brief discussion on development, and what the next step was.  Nothing 'good' was discussed, just the necessary.  I could tell you many wonderful things about Andrew but they don't have time to listen to any of that once you've discussed all the issues that he faces.  These are all necessary things that have to be done for his care, but it is still difficult.

I remember with my daughter being able to be proud of the development she was making and being able to confidently say, "Yes, she's been doing that!"  They were visits to look forward to, except for dealing with the ones where she received immunizations.  The discussions with the pediatrician were always positive with many positive comments.  How I miss these yearly check-ups.

I put on my usual front when the pediatrician came in the room.  I never showed any of my true feelings over the situation.  I have a tendency to hide my feelings.  I appeared to have it all together, unless she's good at seeing through people. As we left, I had Andrew waving to everyone while I was smiling, yet crying on the inside.  Maybe I just don't want anyone to realize how weak I really am.

Others tell me "You're doing such a wonderful job.  Well, I don't think I'm doing anything that most Mothers wouldn't do for their child if they were faced with the same situation.  Some tell me,  "I don't know how you do it!"  Well guess what, most of the time I don't really know how I do it either, and many times I don't feel like I'm doing it like I should.  And I'm doing it just like you would if you were faced with the situation.  I love Andrew just the same as a typical mother, it just requires more out of me to be his mother.  Being a special needs mother doesn't make me extraordinary in any way, just different.  

Andrew can hear...

As I was thinking back on our Christmas gatherings I can't help but think about them through Andrew's eyes.  We were attending one small gathering of just extended 'immediate' family and I can't help but think of how Andrew was treated so differently from the other neurotypical grandchildren in the family.  Andrew was referred to in the third person.  One family member kept telling me, "He's so cute.  He's so sweet," all while he was right beside of me. All the while Andrew was smiling at her and playing peek a boo around my shoulder to get her attention.  He was never acknowledged.  They could have reciprocated with a smile back to him and could have said, "YOU'RE so sweet and cute,"  or even played the little game back to him, then they would've have received a cute laughter from him.    Instead, they chose to just speak to me and referred to him as if he couldn't even hear.   Just because he can't speak back to you in words doesn't mean he can't hear and doesn't know what's going on. 

He was never talked to about Christmas like the other children.  Joy was not shared with him in laughter like the other children.  It was almost like he wasn't there or they were afraid they might catch something from him.  He loves to cuddle, has a beautiful smile, a laugh that would bring joy to anyone, and enjoys the excitement of others.  He was never touched (except by me), given any type of affection, or spoken to by other family.  He was never met with, "Hey, Andrew; How are you doing?  Are you excited about Christmas?"  As I met each family member he was never addressed nor did they even ask me how he was doing.  This behavior continued the entire visit.

 I went and stayed out of obligation.  Unless things drastically change over the next year, I don't think we will be attending next year's gathering.  It is not fair to put Andrew in this environment and allow him to be treated this way.  He is not less of a person than anyone else.  Andrew and I did leave a little early because he was tired.  However, he was awake when we left and as I was trying to be nice and tell everyone "bye" and had Andrew attempt the same, no one spoke to him directly other than "bye."  If it had been one of the other children, they would have said things like, "Go get some sleep, Santa comes tonight!" or even, "I hope Santa is good to you."  Nothing along these lines were ever uttered to Andrew.  I don't know if they are thinking, "Well he can't speak to me, so I'm not talking to him."  He didn't even receive a rub or pat on the back.  Andrew can hear, has a desire for affection, and has feelings too.

 I'm sure he couldn't wait to get out of there.  At one point he was upset due to all of the commotion going on in a small room.  I walked out of the room with him and he was reaching for the door.  I picked him up and he was actually reaching towards our car and fussing.  I can't help but wonder if he was trying to tell me that he wanted to leave.  I felt the same way.  I know if I felt like an unwelcome outsider, I can imagine how he must have felt.

Christmas through Andrew's eyes....

As we celebrate the birth of our Saviour, Jesus, I reflect on Andrew during the Christmas season.  He doesn't get excited about all the presents.  What he gets excited about is the lights, Christmas movies, decorations, and the music.  He would be the same whether he received a single gift or not.  His big, beautiful smile and cute laughter brings us all so much joy. He receives his joy through the happiness of others.  He has taught me so much.  His excitement over others' happiness and the simple things reminds me of the CHRISTmas story.  The gift to enjoy the simple things and not concentrate on all the presents is a blessing for anyone to have.  I know of many adults who have yet to receive this gift.  Just as God's gift of His Son can't be bought, neither can Andrew's love.  It's simply there for you to accept with your heart.  Andrew's love can't be bought with gifts, it is with love and acceptance.  I think of our heavenly Father and His love.  He just wants us to accept Him.  Thank you God for my little Andrew who teaches us all so much!  He truly is a blessing!  May we all be reminded of God's precious gift of his Son during this Christmas season!  May it be the simple things that bring you joy during this holiday season.  Merry Christmas!

Families at Christmas...

Christmas is a joyous time of year.  I get just as excited as my children do.  However, I'm a  little like Andrew.  All of the family gatherings can be overwhelming.  For him, a crowd in a small room can be overwhelming.  He is also out of sorts due to one of his medications changing on Fridays.  It's in the form of a patch that is changed once a week.  Therefore, Saturdays are usually his hardest day, which now happens to be Christmas Eve.  We did limit this day to only one family gathering.  It's especially difficult having to visit another home.  This family time is hard for me as well.  It's not just Andrew having difficulty during this time, but also myself trying to deal with family where there's very little to no understanding of the situation.  I tend to have more patience for him and my other children than for the adults who know better.  They also don't make any accommodations for Andrew.  I'm finding it hard to attend this gathering, which I am doing out of obligation.  However, if I see the situation is causing stress on any one's part, Andrew and I will be leaving early.  I look forward to tomorrow, Christmas Day!  We have planned it so that we won't be attending any family gatherings and have told everyone that they are welcome to visit.  My boys do much better in their home environment and we don't have to worry about anyone making any accommodations for my boys.

I hope and pray that during this Christmas season, that this family has a change of heart in regards to Andrew.  My hope is that they can look at Andrew's beautiful smile, and find acceptance for all those that are differently-abled.   

We are like a lot of other families.  The most stressful times during Christmas is getting together with family.  Andrew and I are looking forward to tomorrow when it's okay to just be who we are and to celebrate this miraculous holiday.  Merry Christmas!

Not an excuse....

This has been weighing on my mind for quite some time.  As most of you know I have two boys with disabilities, even though this blog primarily focuses on my youngest one, Andrew.  First of all, my boys are NOT an excuse!!  They are a reason!!  They are the
REASON that our life is different as a family.  My life is different from a typical mother, my husband's life is different from a typical father, my daughter's life is different from a typical 12 year old, and my boys lives are different.  I don't mean they are different in a "bad" way....just different.  Even through all the worries and day to day struggles, I wouldn't give anything for either one of my boys.

Sometimes the most hurtful and insensitive words can come from family.  We have had to distance ourselves from some because of their inability to accept that we have to do things a little differently.  A family member actually told me that I use the boys as an excuse for everything.  Webster defines excuse as an explanation for failure to do something.  Reason is defined as a rational ground or motive; justification.  I have been accused of doing or not doing many things since my boys have come into our lives.  When I attempt to explain why we have to do things a little different I am told that I use them as an excuse for everything.  You would think that as part of our extended family they would understand more than others.  Some of the most support and encouragement have come from our friends and church family.  The most hurtful things said and done have come from family.  Which, sadly,  tends to be the case with most families.  The ones that you would expect support from during difficult times, sometimes are the ones that provide the least.  Don't get me wrong, we do have family that try to help and support us.  Most of all, they have accepted us as a family and that we have to do things a little differently.  However, a lot of our family have distanced themselves from us.

We were also told by family that our sons did not need the therapies that they were receiving.  They told us that the therapies wouldn't help because they didn't need them.   

I have even been blamed for the sleep issues that my son has.  Andrew has been diagnosed with a sleep disorder, but it was also discovered that he was having multiple seizures during the night and we didn't realize it.  I was told that it was my fault for letting him sleep so much during the day and therefore, he's not hardly sleeping at night.  I had sleep deprivation for months.  I informed them that my son hardly even takes naps.  It's nice to know how someone knows exactly what's going on that doesn't ever hardly visit their relatives.  It seems as though a lot of assumptions take place instead of just asking about him.  I really hope they felt guilty about making these comments after they found out he was having multiple seizures.
Our society as a whole has come a long way in accepting adults and children with developmental disabilities in society.  However, there still needs to continue to be awareness and acceptance taught.  The schools need to be teaching acceptance to our children so that they grow up to be accepting adults.  We have even been told by a family member, "Well, when I was growing up you didn't see kids like him."  Many of you may be surprised by this comment, as we were.  First of all, don't refer to my son, Andrew, as 'kids like him.'  That is so degrading to Andrew.  Also, I want to ask, "Are you ashamed of him; embarrassed by him...Do you want us to hide him away, so that he's not seen?  Do you not think that he deserves the same opportunities as others?"  This comment was a reflection of how society use to view our disabled citizens, including children.  To think someone still has this view is appalling to me. I don't expect these kind of remarks from a family member.  How could anyone say that about their own flesh and blood?  This is a complete innocent child that you have degraded through these and many other insensitive remarks.  I would love to educate them if they would allow me to, but they aren't even interested in listening to any of the challenges that either of my boys face.  Nor do they want to hear why our lives have to be different for the best interest of our boys, especially Andrew.

List of things NOT to say to a parent of a special needs child:

-He looks fine to me.
   After a family member asked us how Andrew was doing, we explained some of the issues that he was facing.  We were told, "I just don't understand because he looks fine to me."

-He's just a boy.  All boys do that.
       We were told this many times when we would express our concerns about either of our boys development.  When a parent expresses those concerns please don't disregard them.  This was not done by the medical community, but mostly family and some friends.   These are not words of encouragement.  It makes the parent feel as though they are not validated or believed.  

-He will talk just like his brother did.
      This was told to me by a family member about Andrew in comparison to his brother, Matthew.  Matthew is high functioning autistic and is a completely different child.  Their differences are like night and day.  You can't compare the two.  Andrew's difficulties and struggles are far different and more complex than his brother's.

-If you wouldn't let him sleep during the day he would sleep just fine at night.
     This was said to me by a family member in response to my comment about how little sleep we were getting because Andrew was up all hour of the night and would only sleep for a short amount of time.  I wish he was sleeping during the day, then at least I could get a little sleep.

-When I was growing up, you didn't see kids like 'him'.
     We received this comment just this summer when Andrew was officially also diagnosed with Autism.  We were explaining some of the physical and behavioral difficulties he was facing, this was the insensitive response we were given.  This has been by far the most hurtful comment that has been made.  It hurts even more that someone would say this about a close family member.  They are missing out on a relationship with a beautiful and sweet little boy.  It is their loss.
         
-When he gets around other kids, he will start talking.
     I wanted to tell them, "Sure he will because we never talk to him at home.  Even his two siblings never talk."  Anyone that knows my older son knows he never stops talking.  It's not just talking, it's attempting to communicate as well.

-Isn't there some medication he can take to fix it?
    I was told this by a family member after telling them our news of Andrew's chromosome abnormality.  Sure, there's medication to give him the genes that are missing from his chromosome deletion. NOT!!  Why not just ask about it if you really are clueless about what a chromosome is?  They acted as if he needed an antibiotic and he would be just fine.

-You use your boys as an excuse for everything.
   A family member told me this when I was trying to explain why we had to do things a little differently as a family.  If the extended family can't accept my boys for who they are, have a little understanding,  and make any changes to allow them to visit more often, then they won't be visiting very often.  I will not endanger my children just so they can visit, however, you are welcome to come and visit us where my boys are most comfortable and the environment is much safer.  They are a beautiful reason why our lives are different.  It's usually friends that are more understanding of our boys needs and that some things have to be done a little differently to accommodate them.  Therefore, it is usually easier to visit our friends and church than some of our extended family.   

These are all comments that have been made to us in regards to one or both of our boys.  There are a lot more that shouldn't be said, but these are the ones that have been told to us and have hurt the most.  To those that have provided words of encouragement or just a listening ear....Thank You!  To our friends, family, and church family thank you for your prayers and support!  I try to hide my struggles and I want you all to know some of the simplest words have made a difference in my day.

Update on Andrew...

I apologize for my lack of blogging here.  It's been a little crazy with so much going on.  Andrew went to the Shriner's Hospital in Greenville, SC on 10/05/2011 for an evaluation by a pediatric orthopedist.  They fitted him for his AFO's (braces).  They also advised me that his tibias are curved causing his feet point downward and turn in.  They are hoping that his growth will correct it by the time he's 6 years old.  If not, surgery will be considered to correct it.  However, they don't seem to think he will need to wear the AFO's for very long, which are for another issue.  His heel cords are hypertonic (tight) causing some instability.  His hypotonia was also confirmed.  I was very pleased with them.  They were great and were even able to cast him for the AFO's without using the saw to cut it.  It was definitely worth the drive.  We will be returning for a follow-up evaluation in 6 months.

 He has adjusted to his preschool very well.  He is attending an EC Prek 3 days/week for children ages 3-5 through our local school system.  They have recently evaluated him for an augmentative communication device or to decide on a form of communication to work with him to allow him to have a way to communicate his basic wants and needs.  Hopefully we will hear from the evaluation soon.

He continues to have his good days and bad days as well as good nights and bad nights.  We are looking into getting him a safety bed for his safety and my ability to get some sleep.  It is not safe for him to be up during the night without adult supervision.  However, these beds are extremely expensive ($5-6,000).  I really can't put a price on his safety, so I'm exploring options to be able to get this much needed bed for him.  If there's anyone out there that has received one of these beds, please contact me with any information and let me know how well the bed has worked for you. It's very expensive caring for a child, or in our case 2 children, with special needs.  If we were to provide everything our boys needed, we would be bankrupt by now.  I spend a lot of time searching for any services possible for our boys.  It's sad to think that we live in America where services are available to help our boys and cannot access them because we are not wealthy enough to pay for them.  Our country needs to do a better job providing for our disabled children.  Middle class families cannot afford to provide the appropriate care these children need and many go without needed services that can make an enormous impact on their future outcomes. Private insurance refuses to cover much needed therapies and care that these children need.  The real tragedy is, if I was to turn my children over to the state, they would receive better health care and much needed therapies than they do through private insurance.  (Which, by the way I would never do).  Okay, now I'm done venting about that issue. 

Lately, I have been putting a lot of time into my older son's educational issues.  As I discussed earlier he has disabilities as well, but they are not to the extent as Andrew's.  However, I still have to make sure he is getting everything he needs for him to reach his full development and potential.  There are times that it's difficult keeping up with the issues that need to be taken care of for both boys at the same time.  I'm having difficulty with the school not providing the necessary supports for my son to receive an adequate education according to the laws.  It's amazing how so many of our educators are not aware of the laws in place for children with disabilities.  They are allowing special education teachers to write Individual Education Plans that are completely untrained to do so.  This results in IEP's that are not providing an appropriate education as outlined according to the laws.  I have been spending a lot of time advocating for him.  I advise anyone that is fighting for the educational rights for their disabled child to not give up.  If you don't advocate for your child, no one will.  Advocating for your child takes a lot of time and research.  I'm realizing that sometimes we have to point out particular laws to the school to get what needs to be done.  Until I get things resolved for him my time may be limited on blogging.  However,  I am going to try to do better to keep everyone up to date on Andrew's journey.      

What Andrew would say...

1.  My character is not defined by my 'dis'abilities...
Are you a person with thoughts, feelings, and many talents, or are you just overweight, myopic (wear glasses), or klutzy (uncoordinated not good at sports)?  Even thought I'm a differently-abled person I have thoughts, feelings, and the ability to teach so much.

2. My name is Andrew, not my brother Matthew...
Please don't compare me to my brother.  I am a completely different person with different abilities just like anyone else.  I will develop at the pace God created me to, not my brother.  Just because my brother also has disabilities doesn't mean that I will follow his same development.

3.  Please don't discriminate me because my abilities are different...
Allow me the same opportunities to enhance my development as my typical peers.  Please don't judge me by my different abilities.  Not only can I benefit from spending time with my typical peers, they can also learn so much from me.  It's never too early to teach acceptance.  Some adults are still having a hard time learning it.  I deserve a chance before judging me.  By not allowing me to participate you not only take the opportunity away from me, but others as well.  Discrimination doesn't just hurt me and my family, it also hurts the community.  Please don't take blessings away from others by not giving me the same opportunities as them.

4.  My sensory perceptions are disordered...
This means the ordinary sights, sounds, smells, tastes, and touches or everyday life that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you, but I'm really just trying to defend myself.

5.  Please remember to distinguish between won't (choose not to) and can't (I'm not able to)...
Language is difficult for me.  It isn't that I don't listen, it's that I can't understand you.

6.  Be patient with my limited communication ability...
It's hard for me to tell you what I need when I don't know the words to describe my feelings.  I may be hungry, frustrated, frightened, or confused but right now those words are beyond by ability to express.  Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

7.  I am visually oriented...
because language is so difficult for me.  Show me how to do something rather than just telling me.  And please be prepared to show me many times.  Lots of patient repetition help me learn.  I have already proven this to my parents, teachers, and therapists.  Patience, patience, patience........

8.  Please help me with social interactions...
It may look like I don't want to play with the other kids, but sometimes it's just I simply don't know how to.  I need opportunities to spend time with my peers to help me develop socially.  Please don't take these opportunities away from me.

9.  Try to identify what triggers my meltdowns....
Meltdowns, tantrums, or whatever you want to call them are even more horrid for me than they are for you.  They occur because one or more of my senses has gone into overload.  If you can figure out why my meltdowns occur, they can be prevented.

10. Love me unconditionally....
especially if you are a family member.  Banish thoughts like, "If he would just..." and "Why can't he..."  You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it.  Comments like, "He's no fun, because he doesn't do anything," should not be made when you haven't made an effort to get to know me.  I don't deserve to be loved any less.  I did not choose to be differently-abled from my peers.  But remember that it is happening to me, not you.  Without your support, my chances of a successful, self-reliant adulthood are slim.  With your support and guidance, the possibilities are more than you might think.  I promise you----I am worth it!
    
 authors: Amy Oster and Ellen Notbohm
    

It's Been Four Years

On September 18th we celebrated Andrew's 4th Birthday!  It's hard to believe it's been four years already.  I never imagined the road we would travel when I held Andrew in my arms.  Would I trade Andrew for a typically developing child?....Definitely NOT!!  He's my precious son and I wouldn't trade him for anything!(Just like any other mother)  Would I trade our circumstances....probably so...however, not if it meant another child or family had to take on our situation in our place.  Andrew has a personality just like all children and I wouldn't take anything for it.  Just remember, his disabilities don't define his personality.  At the age of 4, he has already been put under anesthesia more than most adults.  He's under the care of six doctors and I've lost count of the number of tests that have been performed.  Despite the tests, doctors, therapists, and medications, Andrew is a happy, fun-loving little boy.  Sometimes it's amazing to see how resilient children are. 

Andrew celebrated his birthday with lots of Thomas.  He had a Thomas cake and received several Thomas items that he has really enjoyed.  Thomas is one of his all time favorite characters.  He was even trying to run the train across the track on the cake.  We celebrated with friends and family.  Andrew had a wonderful 4th birthday!

Update...

We went to GI Dr. this morning.  Just added another medication to treat possible reflux.  Andrew has gone from hardly taking any meds a year ago, to now taking six.  However, we did receive some good news in the mail when I arrived home.  He has an appointment with the Shriner's Hospital on October 5th.  I can't wait, even though we will need to leave out at 4am to arrive by 7am.  I'm looking forward to finding out more information regarding his orthopaedic issues as well as getting help for him.

 He has started horseback riding therapy and really enjoys it.  I can tell by all of the noises he attempts to make when they bring him back to me, you can just hear the excitement in him!  We hope this will help strengthen his core muscles as well as promote some language development as it has for other children.  His brother, Matthew, went horseback riding also to help with his anxiety.  He actually was able to enjoy it without thinking about school for an hour.

Andrew has been having some nights of more sleep now.  He is still getting up, but there are some nights it is only once or twice.  This is a big improvement to where we were a month ago.  I'm still sleep deprived, just not as much.  I'm thankful to be getting some sleep, even if it's not a full night! There are some nights he doesn't seem to be having as many seizures as he was.  We have an appointment with the neurologist next week to see what they want to do.  Continue to remember him in your prayers as well as our family!  Remember....It is HOPE and FAITH that keeps us all going!    

I Am Your Son

I am your son who cannot talk. You often pity me, I see it in your eyes.  You wonder how much I am aware of--I see that as well.  I am aware of much--Whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.  I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.  I do not gift you with clever conversation, cute remarks to be laughed over and repeated.  I do not give you answers to your simple everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.  I do not give you rewards as defined by the world's standards--great strides in development that you can marvel over;  I do not give you understanding as you know it.

What I give you is much more valuable--I give you instead opportunities.  Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.  I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.  I am your son who cannot talk.

I am your son who is developmentally challenged.  I don't learn easily, if you judge me by the world's measuring stick; What I do know is infinite joy in simple things.  I am not burdened as you are with the strifes and conflicts of a more complicated life.  My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.  I give you the gift of simplicity.  I am your son who is developmentally challenged.

I am your disabled son.  I am your teacher.  If you allow me, I will teach you what is really important in life.  I will give you and teach you unconditional love.  I gift you with my innocent trust, my dependency upon you.  I teach you about how precious this life is and about not taking things for granted.  I teach you about forgetting your own needs and desires and dreams.  I teach you giving.  Most of all, I teach you hope and faith.  I am your disabled son, Andrew.

Today's Struggles

The day began with a lot of fussing, tantrums, and throwing after a difficult night.  Andrew's seizure medication will be increased tomorrow and I hope it makes a difference.  My other son, Matthew, came home from visiting with grandparents for a couple of days.  He was having a lot of difficulty with his behavior.  I had the 'priveledge' of taking both of them with me to open house at Matthew's school.  We were allowed to go early before everyone else to help with Matthew's anxiety over going back to school.  I was pleased with the impression that I received from his classroom teachers.  However, I was disappointed with the EC teacher.  I thought to myself, does she really enjoy teaching special needs children.  She made no effort to make Matthew feel comfortable with her at all.  After leaving her room, we went to his primary classroom.  He only wanted to hide behind me and would not even look at either of the teachers.  As I was holding Andrew (who was tired from no nap, a night of not much sleep, and tires easily from low muscle tone),who weighs 45lbs, Matthew proceeds to touch Andrew on the leg which sends him to a tantrum and I get whacked in the face.  Matthew proceeds to head butt me in the back while I'm trying to calm Andrew in my arms standing there in front of the teachers.  After getting through this, Matthew tells his teachers he doesn't like the classroom and that he's not ever coming back.  Then he tells them he is going to bring his handcuffs for them so he can take them to jail.  I think to myself, "Really, Matthew, do you have to always say exactly what you are thinking!"  There are some days I just want to put a sign on my back that says, "Excuse anything you might see or hear, it's just Autism!"

 After the difficult hour and a half visit at the school, the multiple tantrums, relentless behaviors, I felt I had nothing left by the time I got back home at about 4:30pm.  I kept it together for a little while longer.  I fed them supper, cleaned up the many messes that were continuously being made, dealing with more tantrums, more relentless behaviors, restraining Andrew to give him his medications and finally I couldn't take it anymore.  I had everyone in their beds by 8pm, even my 12yr old.

Andrew was in his bed screaming, but I had to get myself together.  I was sitting alone on the couch with tears coming down my face and wondered, "Can I really do this?"  I had no one to call on just to talk to and felt completely alone at the time.  I thought to myself, "I'm suppose to be stronger than this; Why am I so weak?"  Everyone tells me what a wonderful job I'm doing and I want to say, "You should see me at my low points, I'm really not doing as good of a job as it appears on the outside."  I'm very guilty of putting on a front to others.  Many ask, "How are you doing?"  I reply, "Pretty good, how about you?"  What I'm really saying is, "I don't want to burden you with my problems so it's just easier to say what most are expecting to hear."  There are a few close friends that I do reply with, "Well, some days are better than others; or We are taking it one moment at a time."  I don't want to be truthful and actually say, "Most days I'm just trying to survive, and then the other days I'm falling apart."  Even though I rely on my faith to get me through many struggles, I still reach low points and have many weaknesses.  Being a Christian doesn't mean that our struggles aren't difficult, it means we have hope.  If it wasn't for my faith, I think I would have lost it a long time ago. As I was writing this blog, Andrew experienced another seizure.  We will be increasing his medication tomorrow, please pray that it works for him so he (and his mommy) can get rest!

Little Blessings.....

As I'm sitting here at 4am with Andrew who had woke up at about 3am possibly due to a seizure, after only 3 hours of sleep,  I take the time to reflect over my weekend.  Saturday was a pretty hard day for Andrew, and the rest of the family as well.  He was upset on and off throughout the morning.  He could be settled down for brief periods of time.  Then the afternoon hit.  Well, it was a 2 hour tantrum that didn't stop.  We (my daughter, Emily and I) had tried everything.  We couldn't figure out what was bothering him so much.  It's very frustrating not to be able to understand what you're child either wants or needs.  I finally reached for a prescription medication that is for itching.  His eczema had really flared up and he still itched a lot periodically from his burn wounds.  This medication is actually an anti-anxiety medication, but works well for itching and can also act as an antihistamine.  So, I finally resorted to this after not knowing anything else to do for him.  After giving him the medication, 30 minutes later he was resting against my chest, in my bed, and sound asleep.  As I watched him look so peaceful, I thought to myself, "Thank you God for the wonders of modern day medicine."  During the time that Andrew was having his 2 hour episode, Matthew (my other son), came out of his room almost in tears was wanting to know what was wrong with Andrew.  He told me to make him stop as he sat on the couch with his blanket, hands over his ears, and shaking.  Matthew, we believe is high functioning Autistic, has many sensory issues.  We try to explain about his brother, but having special needs himself, he is unable to understand.  He cannot understand that Andrew is not doing these things to bother him.  He believes Andrew is getting upset a lot to bother just him.  I tell him, trust me it bothers all of us, but Andrew really can't help it.  After Andrew was asleep, and I left the room, Matthew asked, "Is he better now?"  I thought to myself maybe he does understand a little and how sweet it was of him to ask about his little brother, even though I'm sure it was because he was so glad not to be listening to him fussing, crying, kicking, etc.

After Andrew had been sleeping about an hour, I peeked in to check on him and witnessed him having one of his seizures.  I felt so guilty as a mother for not recognizing this sooner.  This had been going on for months.  After it was over, he sat up and was distraught. I gently leaned him back, rubbed him, and comforted him back to sleep while trying to reassure him it was okay.  I thank God for the blessing of being able to find out what had been keeping Andrew awake all this time.

Later that evening he woke up in a good mood.  He sat and looked at pictures on the computer.  He loves looking at family pictures.  Every time he sees me in a picture he says, "Ma.....Ma," very slowly and using all the muscles in his mouth to just form these simple words.  This makes my heart melt every time, as this is the only time I hear him call me mama.  Hey, I'll take anything I can get, even if it's only from a picture.  Thank you God for this wonderful blessing to hear those words.  I'm sure there are many mothers that may never get to hear those words, therefore I'm very grateful for these utterances he makes even if he doesn't directly call me that.  I long for the day to come that he does. 

Saturday night, a miracle occurred, Andrew slept all night long.  I found him on the couch, so I know he got up at least once, but he didn't even wake me up.  I forgot what it was like to actually get more than a couple hours of sleep.  My body must have been somewhat adjusted to the lack of sleep, because I woke up with a horrible headache.  I thought, I should feel great, but I didn't.  However, I was thankful for the blessing that my son had also had a restful night of sleep for the first time in many months.

On Sunday, he was very sleepy most of the day.  One of his medications comes in a patch and it is changed on Saturday mornings.  This usually makes him pretty sleepy on Sundays.  We went to homecoming at my home church and he slept on me the entire time.  I sat there thinking of all the little blessings I receive through Andrew on a daily basis, no matter how bad the day may have been.  Just like Saturday; it was a bad day most of the day, but by the end of the day I heard him say, "Ma....Ma."  That just made the day a wonderful day through that one small blessing.  It's these little blessings that get me through my days.  Andrew has taught us to delight in the simple things that most others take for granted.  Dear God, Thank you for giving us Andrew to teach us so much! 

Andrew's Story

Andrew was born 9/18/2007 weighing a healthy weight of 7lbs 14oz.  He was a beautiful baby boy.  Andrew was perfect in every way and was the completion of our family.  He has a brother, Matthew, and a sister, Emily.  We left the hospital with our 'healthy', precious little Andrew. 


By the time Andrew was two months old, he came down with a cold that he couldn't get rid of.  By the time Christmas came he had developed severe reflux and RSV.  He was hospitalized the day after Christmas.  Little did we know that our precious, healthy baby boy wasn't so healthy after all.  He continued during his first year with eczema, allergies, bronchial infections, ear infections, and tonsilitis.  He was diagnosed with hypotonia (low muscle tone) at his one year check-up.  Other delays were also noted at that time and we were referred for early childhood intervention services. 


 It became even more evident that there was more going on than we realized during the second year.  He had 2 more hospitalizations for pneumonia and a severe case of tonsilits.  He had other tonsilitis infections and 2 cases of the croup during that year as well.  Andrew's development seemed to be at a stand still.  His delays were more obvious and were significant in comparison to his peers. 


At his two-year check-up he was referred to a neurologist.  The neurologist suggested a MRI along with genetics testing.  The MRI came back normal, but the genetics did not.  We were not prepared for what the geneticist told us.  He told us that Andrew had a rare chromosome disorder.  They said in fact, we have never seen this before.  We were told that he has a deletion on chromosome 16 on the short arm of p at 13.3.  They continued to tell us that they don't know what kind of affect this is having on him or what to expect in the future.  Andrew is the only case with this particular deletion and phenotype that is known.  We left feeling more confused than when we had arrived.  


Over the next year his development remained significantly delayed with no gains in many areas.  His heel chords became tight and was fitted for AFO's (ankle-foot orthotics/braces).  He went through additional MRI's and many other tests.  Our happy little boy was becoming less happy and began experiencing more tantrums than he was happy.  His beautiful smile was being seen much less often.  He was displaying OCD behaviors as well.  Andrew has the communication level of a 12 month old.  My little boy that I bragged on to so many about how he was so easy was becoming very difficult to manage.  He had always slept so good and would even put himself to sleep was now having more and more difficulty with his sleep.  I took it upon myself to go back to his neurologist.  She diagnosed him with Autism and ordered a video EEG.  To my surprise, he had 5-6 seizures during his sleep and was waking him up.  They were lasting about a minute.  I felt horrible as a mother that my child had been having seizures all these months that he had not been sleeping.  There are many day to day struggles having an almost 4yr old who can't communicate and requires the daily living care of a 1yr old. 


Andrew's Diagnosis' thus far:

• Rare chromosome disorder
• Autism
• Hypotonia (low muscle tone)
• Epilepsy (seizure disorder)
• Asthma
• Allergies (environmental/food)
• Reflux
• Tightened Heel Chords

We are very proud to call Andrew our son and wouldn't trade him for anything.  He truly is a gift from God.  He has taught us so many things already.  We ask others to please keep him in your prayers!!  We are currently seeking services for him and pray that we are able to get him some help.  He is in desperate need of many therapy services that our insurance will not cover and we are trying every avenue to get him the help he needs to make a difference in his future.  I created this blog to show the rewards and the hardships of raising a child with so many special needs, to raise awareness to others as well as help those who may be in similar circumstances.  This blog will also show the reality of the situation and how it's affecting not only Andrew, but the entire family.  It helps to know that you're not the only one out there.  It is my faith in Christ that has brought me this far, and I know that is what will carry me through this difficult journey! 
I can do all things through Christ who strengthens me. Philippians 3:14