5 Things About Being A Speical Needs Mom Revisited

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.  Grace is one of those kids.

Luke has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Grace has obsessive compulsive disorder.  We have been through a lot of testing to rule out certain things.  She struggles with academics but gives her best effort.  At the onset of her diagnosis we went through two and half years of therapy to help her with the anxiety. 

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke and Grace, and how blessed they are to have parents "like us" but I often feel I am just so blessed to have them in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with them.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom and Grace's mom and Bella's mom and Matthew's mom.  As a mom of children with special needs, I often feel a myriad of emotions.  I wrote a post like this one four years ago and I wanted to update where I am at now and share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting special needs children takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos, you add therapies into your schedule.  While they may attend formal therapy once a week, there is practice and things to do at home several times a week.  We may visit doctors and specialists several times a month.  Sometimes I feel I live at the orthodontists office, especially now that Luke has braces.  As a kiddo with sensory issues, Luke often has a difficult time with all the weird stuff in his mouth.  Last month, we had a big check up on Luke's eyes at OHSU.  Matthew had a 9 month check up, and there were a slew of other doctor appointments including chest x-ray's for Bella.  If its not the medical needs it is the educational needs.  I have been fighting (what seems like a very long time) to re-instate Luke's IEP (Individual Educational Plan).  I finally have a meeting to begin the evaluation process on Monday.  I keep emailing, I keep advocating, I keep fighting even when there seems to be no fight left in me.  I am ALWAYS advocating for him and Grace and Bella in all realms of life and making sure each child receives what they deserve and need.  The NEW news is that Matthew is about to undergo a full developmental evaluation due to the fact he has some issues that have concerned me (I've only told Mark and my mom).  I took him to a screening and he is being referred on to the Infant Toddler Early Intervention Program.  And while I am thankful we live in a place that has such programs, I am concerned about the thought of added therapies.  The emotional toll of all I carry, causes me to be tired.  I am a worrier by nature and I spend many hours thinking about my kids and trying to come up with possible solutions, new therapies, researching, praying.  Some of my recent thoughts include: what new foods can I give Matthew to help with his sensory issues, what can I do to encourage him to try saying new sounds, how can I help Grace and Luke be more organized...(just to name a couple). 

 2.  I am jealous...I almost didn't put this one down...again.  You can read my post four years ago about what I was struggling with here.  I thought about this again, and sadly it is still SO true.  I don't want to admit that I am jealous, and I thought perhaps in the last four years I have grown and this no longer applies.  But I am being HONEST here.  I feel jealous of moms whose kids can play on typical sports teams, school sports teams or have children that don't always finish last with physical activity.  I feel jealous of moms who don't have sit beside there children and coax them to try their homework, and then don't have to email all their teachers to let them know what they didn't complete.   I feel jealous of moms that can go away for a weekend.  I tried to go away for two nights to an adoption retreat.  Oh how I needed it.  But, I made it one night before one of my children ended up in the ER and I came home.  I was so glad they were ok, but I cried for a couple days because I felt so disappointed that something I looked forward to for so long (the retreat) was over for another year.  I am jealous of moms that have a dozen babysitters on speed dial (or even one).  I get that we have four kids and it is a lot, but having a babysitter that was available would be amazing.  I keep praying about this.  My kids are so wonderful, but they can be difficult.  My mom has been very helpful watching the kids and offering to watch the kids (which I appreciate more than I can express), but she works full time and is tired and sometimes we need someone last minute.  In the last four years, I have also experienced jealousy of moms who still have there fathers.  I miss mine everyday.  Anytime I watch a father hug his daughter, it's there...jealousy.  I just plain miss mine.  He was always full of great insight, help and support.  I grieve still that he isn't here to have a relationship with his grandbabies.  He would have been and amazing grandpa.

3.  I feel alone...  Most days I spend completely alone (with my kids).  I am more comfortable in this role than I was four years ago, but I would still echo as a special needs mom I feel alone.  Mark works a weird schedule these days, so when he goes to work in the morning I don't have much contact with anyone who isn't a therapist, a school teacher, a doctor or specialist.  I try and visit a friend once a week, but it doesn't always happen.  I could use the support of other moms with children who have the same type of issues.  That is why the Called to Love Retreat has been so wonderful for me.  I can physically see that I am NOT the ONLY one who is walking this path.  We recently began attending a new church, and I am happy to report that there is another mama who is walking my same path at church. Which is an amazing blessing! I am hopeful that perhaps we can connect more because I could sure use her friendship.   

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being a special needs mom has really re-shaped my life in many, many good ways.  Luke and Grace have helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  In the past four years, I have also learned that I have limitations, and it is ok to admit when you need help.  I am in therapy currently for anxiety/depression, and I sought out the help of a doctor and I am on medication.  I am human.  And I am ok with it.  Both therapy and medication have helped me in a huge way.  I no longer spend everyday crying, I don't feel like I am the verge of a breakdown, I am not in a constant state of worry, and I am not over analyzing every weird twinge or symptom in my body.  I still have dreams of things I would like to accomplish, but for now I would settle for reading a book, painting or going to the spa. (A mom can dream right?)

5. I am scared...This one is difficult to admit too...still.  While I don't dwell on this thought too often, it is part of raising children with special needs.  I am scared that I won't do something or find the right therapy for them.  I am scared Luke is going to be blind someday due to his glaucoma.  I am scared I won't know the right things to say when we talk about their adoptions or know how to answers their questions?  I am scared I am not doing enough or that I am doing too much?  I am scared when Luke goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I worry Grace isn't turning her work in or she is distracted.   I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke and Grace (and Bella and Matthew too).  They bless me in ways that I can't explain.  When I look into Luke and Grace's eyes, and I see how happy they are, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call them all mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", ask her to "finish the job," tell them "no" or the million other things I do, I remember that God according to His plan choose us for them.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke and Grace is a promise that God has a BIG plan for their lives.  I really believe it.  So even though it may not look so pretty in the trenches, I am there, I am fighting.  I am real.  I am THEIR mom. 

5 Things About Being a Special Needs Mom

Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability.  That's about 10 million children in the US.

Luke is one of those kids.

He has several disorders.  Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs.  After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.

His disorders (or special needs) have caused medical and developmental problems.  He has been in physical, occupational and social therapies.  He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies.  He has been through more doctor specialists than I can count or remember.

Raising a special needs child, is a blessing and a challenge.  It is rewarding and trying.  It is inspiring and defeating.  It is like you can't have one without the other.  You take the good and the not so good.  I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that.  Many people will tell me what an excellent job I do with Luke, and how blessed he is to have parents "like us" but I often feel I am just so blessed to have him in my life.  I don't feel like I am anything special, and most days I feel that I am just "not good enough".  I yelled when I shouldn't have or didn't do enough activities with him.  I fail on so many levels, but I am human.  I am a mom.  A special needs mom.  Mainly though I just like to be known as...Luke's mom...(and Grace's and Bella's).  As a mom of children with special needs, I often feel a myriad of emotions.  I took this idea from another blog and wanted to share MY "real" honest thoughts about how I feel as a special needs mom.  Maybe you can gain some insight into how it is to be a special needs mom. :)

1.  I am tired...just being a mom is exhausting.  Especially to little ones.  However, parenting a special needs child takes things to another level of being tired.  On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies.  While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week.  We may visit doctors and specialists several times a month.  In February Luke visited the orthodontist 5 times.  In March so far he has been to OHSU for his eyes.  He will also go visit his primary care doctor this month too.  If its not the medical it is the educational.  I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP.  There is a whole week in October I will never be getting back.  There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs.  The emotional toll causes one to be tired.  I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying. 

2.  I am jealous...I almost didn't put this one down.  I thought about it a lot and sadly it is SO true.  I would never want to admit this to anyone or let anyone see this side of me.  But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows.  I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I.  I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities.  I feel jealous Luke can't attend a private Christian School because they cannot meet his needs.  I feel jealous when other mom's can go away for the weekend without children.  (I know this sounds a little selfish, but I am not perfect and just being REAL.)  Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?).  It wasn't because I was upset or mad.  I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous.  I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with.  I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three.  Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself.  My stomach was in knots.  Luke can throw some rippin tantrums, and has a difficult time with change in routine.  He can melt down easily when he is feeling anxious.  How did it get this way?  The last time Mark and I went away for 1 night, just the 2 of us was November 2009.  We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that.  I am jealous of those that can and do.  Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).


3.  I feel alone... I went to a MOMS group at the beginning of this year.  It was a sweet group of ladies, very welcoming, but I only went once.  When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists.  They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?"  I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for.  Which leads me to this point of "I feel alone."  Most days I spend completely alone (with my kids).  Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist.  I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.

4. I am human...I am not a saint, even though well meaning people do try and tell me I am.  I have bad days, off days, days I feel like I am failing and think I am not doing a good job.  Being Luke's mom has really re-shaped my life in many, many good ways.  He has helped me discover who I really am.  I have realized that I am a lot stronger than what I thought.  I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot.  I still have dreams of my own...things I would like to accomplish.  A few dreams that have lingered since before I became Luke's mom.  Memories of the past.  I still love to get my nails done, shop and visit Starbucks.  Music helps...I love my iPod. 

5. I am scared...This one is difficult to admit too.  While I don't dwell on this thought too much, it is part of raising a child with special needs.  I am scared that I won't do something or find the right therapy for him.  I am scared he is going to be blind someday.  I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks?  I am scared I am not doing enough or that I am doing too much?  I am scared when he goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules.  I am scared that time is going by too quickly...moments are passing I won't ever get back.  Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?

My life is forever changed (for the better) by raising Luke.  He blesses me in ways that I can't explain.  When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine.  Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy.  I don't take that lightly.  I was called to this "position"...to take up my weapon and fight for those who cannot.  I know that the mere existence of Luke is a promise that God has a BIG plan for his life.  I really believe it.  So even though it may not look so pretty in the trenches, I am fighting.  I am real.  I am HIS mom. 

Discouraged...but still fighting

Sometimes when it rains....it pours.  This was true this past week.  The week started typical...Monday morning errands and such.  What the rest of the week would entail, would be absolutely unbelievable.  Through the process of researching Luke's most current IEP, I discovered that the school district was not providing services listed on Luke's IEP.  He had been missing 45 minutes of services per week.  Not only was this a HUGE oversight by the school district, it is illegal.  Luke is entitled to a free and appropriate education and they failed to provide that.  The director of special education is involved now and I am seeking restitution for the missed services and service time for Luke. 

This situation leaves such a bad tasted in my mouth.  I entrusted my son into their care.  I even spent time talking with the staff at the school before I enrolled him to let them know my concerns, thoughts and apprehensions.  They broke that trust and now I feel that I have to check and double check just to make sure Luke is getting his services and they are doing their jobs. I just always feel like I am fighting and fighting and fighting. If I let my guard down for one minute, I feel that something horrible might happen.

This situation has caused me to question everything.  Education, special education, IEP's, what really is important in the education of a child.  I am left feeling empty, confused and sad.  It even makes me wonder why we have special education when staff doesn't care to read or follow the IEP (Individualized Education Plan).  It is absolutely disappointing.  I think was is the most frustrating for me is that the school district and teachers were cheating my son, Luke, out of what was legally and rightfully his.  Really!!! They are messing with my baby.  He has been through so much, and to now to have those that are supposed to be protecting, educating him and helping him, not even follow through makes this mama MAD (to say the very least).

On the home front...I am really missing Mark.  He is gone a lot and I am left to ease the feelings and actions of 3 little people who miss him dearly.  When Mark was home this week, it seemed everything and everybody was just pulling him away from spending a few minutes together.  His phone would ring (a friend), his phone would ring (friend from work)...van had a leaky tire, the neighbor needed his help, the neighbor needed advice, the church needed him to go down to the bank to sign some papers for something, etc, etc...

To top it off, the one night we had together with him home this week Bella got sick.  Of course, Friday night, she would not be feeling well.  She wouldn't go to sleep and had difficulty staying asleep. Up at 11pm, up at 2am, up for the day at 4am.  I knew right away she had an ear infection.  Got up Saturday (well waited for Urgent Care to open) and took her to the doctor.  DOUBLE EAR INFECTIONS.  The doctor said her ears were bright red and bulging.  This is her 4th ear infection in less than a year.  I think we have ear tubes in her future.  It might be time to call Dr. Wilson.  Ughh.  My poor baby.  Mark's train was called when Bella and I were still at the doctors, so we missed spending time with him again.  Thankful for both Grandma and Mimi, who stopped by today. 

Tonight I was supposed to get to go to a girl's night...a night off.  I had a babysitter and was really looking forward to grown-up conversation and a time to vent, laugh and not have responsibility for a couple of hours.  But..due to the ear infections it didn't happen.  I really needed that break too.  Oh well..Bella needs me and I am where I am supposed to be...but I can feel disappointed.  Another time.

So that is my fantastic week in a nutshell.  I am believing next week will be better.  Despite all the difficulties I am thankful for so many things...a home, my children, my husband, a place where I can access medical care for my child on a Saturday, friends that care and grandmas and Mimi's that stop in and help out.  Tonight I am thankful to the doctor who prescribed numbing ear drops for my baby, so that for the first time in 4 nights I will be able to get some sleep in my bed and not sitting in a rocking chair.

Luke's Book

Luke has this awesome interest in making and writing in books (or white computer paper he staples together).  He loves to sit in his bed at night and write and write and write (which just thrills this teacher mommy's heart!)
Yesterday, while he was playing or resting (he's been sick) I found his latest book he has been writing in.

He titled it "My Days".  It reads:  "Dad takes me to do fun stuf.  and cool stuf. like golf or shooting, or football.  And we play together, and go bike riding together and going fishing.  Today Mom and Dad are taking me to a rashtront (restaurant) and I found a dead phone last night (my old cell phone).  I am keeping it.  We are going to a rashtront.  Tomorrow I am going to school and home.  I mite go on a bike ride, and sleep in to (I would LOVE that Luke!).  On Tuesday I am going to play the Wii or twister or truble or nerf or play with the baby.  On Wednesday I am going to krody (karate) with Theron (boy in his class) and sleep in (there it is again!).  And play nerf on the Wii or play outside with Grace.  We fite (fight) together.  Not the fiting (fighting) with swerds (swords).  On Thursday I am going to therapy at the hosebitl (hospital) with Joy (his therapist).  We have fun together and play games together like skitball (?) On Friday I am going to school or staying home.  I think I am going to school on Friday.  On Saturday I think we are going to bul (bowl).  On Sunday we are going to cherch (church).  Mimi will come over to are hose (house) or not.  On Monday I go to school every day exept (except) for Sunday and Saterday.  On Tuesday I go to school it is fun. **** BUT there is a buly (bully) in my class.  His name is Hunter.  He pretens (pretends) to punch me.  He lafes (laughs) at me win I take a penny off my name bord (board).  He is not nice to me and he calls me stuped (stupid) every day. This is my sher (share) day today. But I have a cold and can't go to school.  My dad is nice but Hunter cales (calls) me stinky pants. But I ignor (ignore) him.*****  On Wednesday it is a hafe (half) day and we are lerning (learning) dividion (division).  On Thursday I get out of school ely (early).   I have therapy. We play together.  I thror (throw) ben bags (bean bags) in a target.  It is fun.  We do table work.  On Friday my dad takes the day off on fridays.  He us (used) to take tusdays and mondays off.  He got bumbed (bumped) to the 221 job.  But he us (used) to work on the 227.  He is going to get col (coal) for me.  On Saturday my dad hase (has) to work. It's (yes he used a contraction!  Go Luke!) sad. On Sunday Mimi come's(now he wants to use them alot) over on Sunday.

I honestly can't believe that he wrote all of that with NO help from Mark or myself.  I must admit I teared up reading about him describe being bullied everyday at school.  How is that ok? or acceptable?  Why must the bigger prey on the little and the different?  My heart breaks that he gets on the bus each morning knowing what awaits him the classroom.  I talk with all the teachers all the time and there never seems to be an resolution to the issue.  I have seen this boy in action and I have no doubts that he knows how to push Luke's buttons.  I just bothers me that with all of Luke's OTHER issues (glaucoma, tourette's, ADHD, sensory processing, auditory processing, microcephaly, etc.) that he HAS to deal with this kid.  Makes me MAD.  He tells me he gets picked on when he leaves the classroom early to go to various therapies and OT with us on Thursdays.  Please pray for wisdom for Mark and I as we discuss the educational future of one VERY exceptional child!

Evaluations

Evaluations....what are they really? A snapshot...an opinion...a thought...or are they an assessment given to summarize where a child is at, at a given moment? I am in the stage of waiting for all of these evaluations to come back on Luke. April 12th will be our day... mental note...need babysitter...mental note...need to take the day off work....the day we find out about Luke's evaluations. Over these last 35 days, Luke has been given all different types of evaluations. Some of them I am familiar with...some I am not. These data devices help us to plot out where Luke is on the Bell curve. We are looking to see how many standard deviations Luke falls from the norm. Anything over -1.5 standard deviations from the norm is a cause for a delay and needs to be addressed. They will have looked at and evaluated Luke's social/emotional/behavioral skills, cognitive skills, fine motor skills, academics, occupational therapy, sensory, speech and language, and medical history. I located, picked up and delivered all of Luke's medical records as requested. Glad I can check that off my list. I just keep praying and believing that all my hard work and effort will make a difference on his IEP (Individualized Education Program).

In other NEWS....I did 12 loads of laundry today. 7 loads I did at once at a laundromat. I have found myself so far behind that I just wanted it all finished. So I loaded up, and went washing. It was kind of fun.

Grace is getting an award in school. Bella will turn 1 next week and Luke will "officially" turn 8 next week. I am looking forward to Spring Break and planning to take the kids to some type of kid museum somewhere.

Luke's Bad Day

(Luke @ 3 years old)

I feel as though I am constantly fighting. Fighting for Luke, fighting doctor's office for reports, fighting government agencies, fighting with him to take his meds, fighting the school for them to do their part....I'm tired, so tired....and yet the fight continues. It has to continue. It doesn't stop.

Luke had a bad day yesterday. So, now I am fighting with teachers. I thought sending Luke to public school would get him the services he so desperately needed. Boy..was I wrong. I spent hours talking with school officials about my concerns. About how Luke was different, about how I was worried about him being bullied and having no friends, about his tendency to be bossy and argue. They "assured" me that they had strategies in place to help him deal with these things while they re-evaluated him. Yesterday, Luke was embarressed by his teacher in front of the whole classroom because of social skills that Luke doesn't yet have. He essentially got "in trouble" for having a giving heart. The teacher called me to tell me this and when she did I just laughed because I didn't see how it was big deal. She told me that she instructed class not to "accept" things from Luke anymore. Apparently, Luke gave away all the mechanical pencils I bought for him at Target. Big deal. When I talked to Luke about this, he told me "Mom I was so embarrassed that I couldn't even talk or look at anybody. I wanted to run away." My baby!!! I am the horrible mother that put him in this situation. Can you believe it? Because somehow I thought this was the magic class, the magic pill the magic whatever that would help him and solve all my problems. What a naive attitude right? Let's just face it...I was delusional :)

Now I have a little boy who HATES school. He cries, refuses to go out to the bus stop and even runs and hides. He cries to me "mom I have NO friends. Nobody likes me. I hate school." What is a mama to do? Here he has adhd, microcephaly, tourettes, glaucoma, sensory processing disorder, etc. and I fed him to the wolves. Mark and I have been round and round and discussing everything. What am I to do? How do I find something, some program that is a good fit for LUKE. My heart is breaking. I should be able to figure this out, but I am stumped. There is just one thing I know for sure. This can't keep going on. Something has to change, or my sweet spirited, loving little boy is going to be crushed. Help.