Lessons Learned, So Far

dfe2f304e85dd6c08f3f3f6aa7198fa1I’ve had a little revelation about what it’s like to be a special needs parents for almost 15 years.  Darling Boy spent time at a birthday party for one of his classmates.  I got to talk to some parents who are in the same situation.  It’s hard to get together because D.B.’s school draws from all over the city, surrounding suburbs and even surrounding states.  It was a great day of bowling and pizza and celebration. And I realized that these parents all had teenagers with special needs and we have learned so much from them.

Which brings me to the other revelation I had this weekend,   I have learned how to cope with this life and would like to share some of my insights for those of you out there with a child newly diagnosed with some vague description like developmental global delay.  When Darling Boy was first diagnosed he was 18 months and was given that vague diagnosis.  He also got  a medical diagnosis of encephalopathy which generally means your brain ain’t normal.

 I was an early intervention teacher who spent most of his first year testing him for things like object permanence.   That’s when you put a cookie or toy under a tissue and see if the infant pulls the tissue off because she remembers that it’s there.  It usually kicks in around 10 months and is the precursor to language because one must know that an object exists even if you can’t see it in order to be able to attach a meaningful sound to it. He actually made most of his first year milestones  on time except that he never made consonant sounds.  But he rolled over and sat up and crawled and cruised furniture.  He even touched (never pointed) to a picture of a cat when asked.  But he never walked on his own,  so he started early intervention services at home for everything:speech, occupational therapy, and education.  I was pregnant with twins, working full time, living in a 2 bedroom apartment and having people coming to my house all the time.

I learned that my house didn’t have to be perfect.  That my in-laws loved coming over and helping out when we were both at work.   The biggest thing I learned during this time made me a better special education teacher.  I found out that all the activities and exercises that the therapists left me were too much.   I did what I could and remember I had just finished doing early intervention for a living.  Who better to implement this stuff?  yeah, that didn’t happen because I was too busy being pregnant with twins and then having 3 kids 22 months apart.

So, if your child is newly diagnosed, do what you can about what the therapists tell you but remember that you can’t do it all.   There will be breakthroughs, especially in communication, so keep at it.  But don’t feel guilty if you can’t do everything that therapists tell you to do.

I remember during the early years of his diagnosis googling his symptoms: microcephaly, , low tone and developmental delay.  None of the outcomes were good but I kept thinking he would walk and talk.  I had great hope.  And this is something that’s important to hold on to because coming to terms with a diagnosis is a gradual process.  There’s no one moment that you say,  Oh, this is what it is and I accept it.  When Darling Boy turned 7, I finally admitted to myself that he wasn’t going to walk, talk and was intellectually disabled.  I drank for a week and I am not a drinker.  My husband told me that he would give me a week and so I took that week and drowned my sorrows.  I’m not advising this as a coping strategy but it did work for me.  It was the beginning of me accepting that this was permanent and feeling really horrible about it.

Please be kind to yourself.  It can be so hard when you can’t sleep at night because you’re worried about your child’s future.  Darling Boy will never be independent or hold even a job with supports.  I’ve decided that his job will be to provide jobs for other people and I’m happy about that.  I work in the special needs field and I love my job.  Now D.B. can provide meaningful work to other people.

A side effect to having a child with special needs is that it makes your life simple.  Despite all the complications that arise,  you will find meaning in simple joys.  I appreciate all of my other children’s developmental milestones.  It was an eye opener when I took one of the twins to the E.R. last year because she needed fluids.  She hopped up on the bed,  I  talked her through the stick and we watched a Project Runway marathon.  I wouldn’t call it a fun outing but it was so easy compared to D.B.’s little excursions.

After over a decade of being a mom with a special needs child,  I’ve learned some neat things.  I am not broken.   I feel that way sometimes and I felt that way a lot when everything was new.  My dreams for Harvard (never really likely) died.His dad’s dreams for playing football and soccer with him died.  But they are feelings and they pass.  I am not broken and neither is he.  Now that I have an actual diagnosis,  it helps me to be prepared for what will come next.  His muscles will deteriorate but his mind keeps moving on.

If you have a child who doesn’t talk,  keep talking to them and exposing them to everything.  I assume that Darling Boy understands more than he can say.  We’ve started reading him Harry Potter books and he really enjoys them.  We watch reruns of Castle when he gets home from school as well as  music videos and even TED talks. Just the other day on the way to the birthday party I wanted to stop at the post office.  As soon as I pulled up near it and said that I was stopping, he pitched a fit.  This from a teenager who loves to take car rides.  I changed my mind and that little bugger was fine for the rest of the car trip.  I think he wanted to get to the party, don’t you?

I hope that I can be helpful to those who are just starting this kind of parenting.  It doesn’t necessarily get better but it does become normal.  I never thought that I would be able to deal with seizures and g-tubes but here I am.  I’m often sad and overwhelmed by this experience but that’s because it is difficult.  There’s no other way of saying it.  But I do love him so and he loves me so unconditionally.  And with teenage twin girls in the house,  that is a blessing!

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2 comments

  1. Hello!
    Sorry for my English, i am fromm Greece. And tomorrow i will take the DNA test for my little baby, Prodromos who is 4 years old. They already told us that he has muscular dystrophy 99%. So we have to go through all these tests to find out the type of the disease. I knew nothing about it. So i google it and after that i felt darkness all around me. That my life stoped. You know exactly how i feel. I still cant cry but they tell me it is good to cry. I live in a country with no support on this disease and me and my husband think seriously to migrate maybe to Melbourne where we have relatives. I am trying to stay calm, but you know that this is very difficult. Thanks for your article. I am looking desperately to find sth to calm this undescrible burn inside me.
    i send you my love and a big hug to all of you

    1. Yea I know how you feel. The best thing I’ve done is go to therapy I’d that is available to you. This is hard and painful. Please feel free to write to me . I will add my email . Right now I’m at work and can’t remember the exact spelling for the Gmail address.

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