Thank you Kim for sharing your caretaker story!  It’s all about awareness, folks.  As people become aware of our stories, we will see change and resources become available.  In the meantime, if you want to support respite days, please consider a donation.  Every cent goes to helping special needs families take a break.

 

Let’s start at the beginning. Introduce yourself.  Where do you live? What do you do? What does your current family structure look like? 

My name is Kim Wong and we live in Michigan.  I work part time at A2 Therapy Works as an assistant office manager.  I also homeschool 2 of my 5 children, while doing all the mom things.  We are a family of 7 – our oldest daughter will be 21 next month, our oldest son is 18, our middle daughter is 16, our youngest daughter is 12 and has Down Syndrome and Autism, and our youngest son is 6.

When did you first learn that your child would have special needs? Pregnancy? Shortly after? How did you feel? How do you feel now? 

We found out at our first ultrasound.  I was about 16-17 weeks pregnant.  It started with the neonatologist doing lots of pausing and thinking while looking at our baby.  We were there for much longer that I had anticipated.  My husband met me there and while we were both very happy to see our new baby, we were both cautious because this was our 4th child (we lost the child before her) and this ultrasound was taking way longer than any of the previous ones.  When he finished up, he said he was going to refer us to a geneticist and for a fetal echo.  He said she had “thick nuchal folds”.  We had never heard of the term.  He said it could mean one of 2 things – either she has Down syndrome or she has a heart defect.  Both of us were shocked and didn’t really know what to say.  After we left the room, I went straight to the hospital phone and made the appointment because I really thought it had to be a mistake.  2 weeks later we saw the geneticist and about a week after that, we saw the cardiologist.  We got a 99.97% positive result for Down syndrome and a ventricular septal defect in her heart.  I have never cried so much in my life.  I was afraid of both diagnoses.  I didn’t know much about DS and I was scared to death that something was wrong with her heart.  I thought it was because of something I did.  I blamed myself.

When I was in labor with her, and it was time to push – I just cried.  The nurse asked me what was wrong…I told her that in a few minutes, my whole life is going to change….   I was right.  My life changed and it is AMAZING!  Everything we went through from the day we found out, through all the surgeries, all the therapies, all the sleepless nights – all totally worth it.  She changed our family – she made us better.

Can you explain your child’s specific needs and how these affect his and your day-to-day life?

She has Down Syndrome and all that comes with it – the cognitive and developmental delays – speech delay, apraxia, loose joints and is very flexible, poor vision, the flatter nose which makes it hard to wear glasses but makes it much easier to get a sinus infection, small ear canals with borderline hearing issues.  She has sensory issues to certain foods and textures, to our noises, dimmer lighting, crowds of people are all over stimulating which cause her to have panic attacks and anxiety.  She doesn’t have much as far as endurance because of the heart repairs she had as an infant.  She has had kidney reflux until she was about 3 and thankfully didn’t have any issues by the time she turned 6.  I was told that she has low muscle tone to which I say – YEAH RIGHT – she is by far the strongest child I know.  She is crazy strong when she doesn’t want to do something.    It makes it hard to do daily things because she needs things a certain way.  The older kids do just fine adapting to her, but her younger brother doesn’t always understand.  We rarely participate in group activities or social events.  When the older kids had plays or sporting events, my husband and I took turns.  When she was younger we could hold her and she would be fine.  But as she got older, she was too heavy/big to hold and much to strong to keep in our arms.  We pretty much avoid going out to eat, or movies or places with a lot of people.  On the few and mostly rare occasions where we really have to go out or we really want to be part of something for the other kids, one of us will be on “Mackenzie – duty”.  We have started ABA therapy and things are slightly better and we are trying to venture out a little more.

What are the biggest worries you face for your child? What are your biggest goals?  

Biggest worries?  All of my worries are big.  I worry about her at school – is she ok – is she being picked on – does she feel safe – are her needs being met – is she nervous or afraid about a new situation – did they have a fire drill today – how did she do – will she run from her teachers or para pro – did she eat lunch – did I give her something she likes or will she just go hungry ..

Then I worry about hitting developmental milestones – she has sensory issues in her mouth – does she have a loose tooth (she doesn’t tell me about those) – she doesn’t like blood – she started her period – that’s been fun – or if she gets hurt, she hates bandaids – is she just going to bleed allover or is she going to let me help her.  Does she know she can trust me to take care of her?  What about next year going to middle school – middle school is awkward and the kids are jerks at that age – will she be taken advantage of?  Will she have a real friend?  Her siblings are older that her – what will she do when they leave the nest?  They are a best friends, will she be ok with being with just us?  What happens to her when we pass away?

Biggest goals – everything she achieves is BIG.  The next BIG thing is reading.  I spend so much time worrying, I can only focus on one goal at a time.  Right now, I want her to learn how to read.  But ultimately – the biggest goal – is her salvation and independence.

Do you have a transitional plan for your child when he/she ages out of school?  Can you explain what this looks like?  

Not really.  I hear from many people about some classes for job training and adult type classes for independent living. I might look into those when the time comes.  I’m expecting her to live with us always and if we are not around, her siblings all want to have her with them.

I’m a big believer in self-care.  What are you incorporating to address this need?

We have her do as much as she can by herself.  We work on it at home, in speech, OT and ABA therapies.  We try to get everyone, including her caretakers at school to also be part of her team.  We want everyone to be consistent.

I also believe breaks are vitally important for special needs caretakers and this is how The Lucas Project serves the special needs community. Are you able to get a break occasionally? If not, what hinders you from getting this?

Not really.  Being the Mom, I do most of her care.  She is easier now that she is older, but I still manage all the appointments and scheduling for her and the rest of the family.  I work 2 of the days when she’s in school and I homeschool my 16 year old and 6 year old, and try to get as much done as I can around the house.  We do try to go to Joni and Friends family retreat for special needs families once a year.  We have gone this year and the year before.  It was great, but it’s really expensive.  We couldn’t have gone without scholarships.

I believe in seeking joy even when times are hard.  How has being a special needs parent brought something positive to your life? 

Every day she is my joy.  When she cried and took her first breath to the screaming she does when she tells me she doesn’t want to go to bed.  Most people chose not to have babies like her – she is our gift.  Her life brings us joy.  I cannot imagine my life without her.  Every thing that we have experienced since she’s been in my belly to this very day- good, bad and downright horrible – is all blessings.  We have become so much stronger and closer as a family.  We see her fight to do things we take for granted and we appreciate life more.  We fight for her and we learn how to be compassionate to those around us.  She teaches us how to love – how to laugh – how to live.  Even when she’s angry – we learn.  We learn honesty and vulnerability. She is truly the best part of our family.

How can people best approach or respond to your child? Is there something you wish other people understood? 

Treat her like a PERSON.  That is it.

She is just like you – she has feelings, she has likes/dislikes, she is funny, she wants to be included, she wants to be loved, she can learn, she can do anything.  She just need time. She can achieve anything just on her timetable – not anyone else’s.

Finally, what is one takeaway you want others to understand about being a parent to a child with special needs? 

Its just parenting.  You don’t need to be special or equipped.  You become equipped.  Your child is your teacher – just listen.  I meet her needs just like I meet the needs of my other children.  I take them one at a time.

Thank you again for your honesty and willingness to share.