Sunday, June 28, 2015

hard work

So many people do not get this, not at all.  They look on with pity or are sad.  Yes, this is all unfair and everything, but you do realize I have two sweet boys.  Landon is so caring and concerned and hysterical and smart.  Logan is so observant and wants to do everything on his own, he is so funny, and he is protective.  Landon tripped yesterday and first I was holding him, and he was calming down, and logi was watching, but then as Landon usually does when something bad happens to him, he hit me, only one time, and Logi runs over and hits Landon in the head.  It made me lol.  He was so mad at him for hitting me.  The boys are so good.

Anyways, my dad typically has no idea.  So he says to me the other day that I will have to start working very hard with the boys this summer.  WHAT?!? I said Dad, I work hard with them everyday.  I have been for years.  He does not get it.  I know he means potty training, which we are doing, but still. ugh

Sunday, June 21, 2015

Where will this journey go?

I still struggle with guilt, that I did something to cause this, that I did not protect my kids.  I don't think looking back I ever did anything wrong, but I don't know.  It's not fair.  I am proud of myself.  I see myself as rising above, as working very, very hard.  I don't think most mothers could do this as well as me.  I am being honest.  In our own bubble, we are so happy here.  We are thrilled when Landon signs open.  We are so happy when Logi babbles.  I can't even explain.  It is just pride.  Then we have to go out and we see that our kids are not like the other kids.  And that part hurts a lot.  It's easier to be inside, but not fair or right. 

When will Landon start talking?  I don't know.

When will Logan talk?  I don't know

When will Landon be able to try something new without feeling so nervous?  I don't know.

When will Logan be able to use a spoon or not throw his food?  I don't know.

When will Landon be able to draw something and tell me what it is?  I don't know

When will Logan drink from a straw cup?  I don't know.

So many I don't knows.  So many this is so not fair.

Yet we have to keep going and we will.

We have to have faith.

Wednesday, June 10, 2015

A new dx

I will start with life is surely not fair.  It has never been fair, nor will it ever be fair.  It seems to be fairer for other people, but I do know everyone takes a turn with this.  My turn is now.  No one has children who are perfect, all kids have challenges somewhere, and at least I know my kids' needs early on.

Logan Gabriel was diagnosed yesterday with a mild hearing loss in both ears across all frequencies.  As news rang out, I received texts that said things like "seriously?" "I am sorry" "and my heart sinks for you."  Everyone shares our pain which is a nice feeling.  Logan passed his hearing test the 2nd time at birth.  Landon had failed his three times before he had an ABR so I wasn't worried when they said Logi had passed.  As Logi was developed, he did not babble until 16 months, but again, concerns were said about motor planning, so I saw that as pure up apraxia.  He is still not talking, but he does babble.  He does try to imitate.  He is a very observant, social, and curious little boy.  Now knowing he has hearing loss, I see him strides and his accomplishments as amazing, another testament to how smart he is.  He is a problem solver.  

So last September, Logan was referred for a hearing test.  I had no concerns with hearing, so I said I would see how he developed with the addition of more services and daycare.  In December, I called and said I will take the hearing test. I signed consent I think a few days before Christmas and his first hearing test was on 2/19.  He failed that in the booth and responded only at 50db; however, I was assured that most kids 21 months would fail in a booth because their attention isn't always there. I asked the classroom teachers at his daycare and they said he hears like the other kids as far as responding.  Ok, so I will do this process but I was not worried.  His receptive language is not great, but I was thinking more motor planning or auditory processing, and the fact that his therapy is push in, and I can work on it more this summer So off we go, to two appointments with this hearing doctor before we had the ABR.  Alex had to take him and he could not eat.  He was miserable when he arrived at the hospital.  He got to ride off in a little push car and was honking the horn and was happy.  Alex did not go with him back there, but had got him changed into a little hospital gown and little hospital socks.  I arrived there about 11:15.  We got called into a tiny room at 12:30.  I knew it wasn't good.  The audiologist started talking as if I am not an SLP, so I said that I was, and I wanted to know the loss, what he can hear, what sounds he would not hear, etc.  The loss is 25-35db across all frequencies.  He would not hear a whisper at all.  Conversationally speech he does hear, but it is not clear.  He needs bilateral hearing aids.  So off we go getting this.  He can get more services.

How do I feel?

Mostly I know all of this is out of my control.  I did everything and made good choices for my boys, and sometimes, life isn't what it should be.  We have to grieve the little kids we wanted and thought we deserved to have.  Instead, we marvel at their accomplishments and we love them so much it hurts, and I know it hurts, because I couldn't sleep last night and woke up about to vomit this morning.  It hurts so bad because it feels like it is us. In the grand scheme of it, I would take hearing loss over apraxia anyday. I will get him what he needs and see if it helps.  I will continue to be proactive.  I am sad for my Logi.  He is such a cool little kid.  I can already see the fight where he doesn't want to wear his hearing aids and I hear him talking and it is beautiful.  The life I see ahead is beautiful and I pray to God he gives us a chance soon.

Saturday, June 6, 2015

Sitting between hope and despair

On two separate days recently,  I actually thought I should just give up.  It was kind of scary.  I thought maybe this is it- I will  have two little nonverbal boys forever and this is my life.  The truth is, I actually look for nonverbal adults everywhere I go.  I have yet to find one that was not physically or severely disabled in some way.  Am i looking in the wrong places?  Not sure.  I still don't see many kids who do not speak.  I still don't get that part.  Anyways, I was not meaning give up, like stop therapy, but just not do all the extras.  However, I can't do it.  This week I really drilled the "open" sign with Landon, to use on his own, and guess what, he can do it.  It looks really cute because he is dramatic and his motor planning is off, but he learned it.  It is so much easier to prompt by sign than it is for him to verbally produce speech.  "ON" is back, but it came back as "om."  I hear yea and mama and yum and his usuals, but nothing really new that is sticking.  He is still trying.  I look at him as strength.  I can't give up.

Logan is babbling more, starting to vary the sounds.  He gets his point across too.  He knows where everything is and he figures how to get stuff himself.  I have so much work to do with him this summer, but I am hopeful.

So most days I sit between almost throwing up thinking Landon will be 4 and may not really be speaking, or that I actually have two boys with apraxia.  I look at kids doing activities, like today I saw a little soccer league, and I pray with every ounce of my being for my boys to be able to participate in something like that.  I see kids joining activities and I just hope my boys can feel confident enough and with a sensitive enough coach to do that one day.  Right now, I would never let them do it.  But I have to hope.  I have to.  Life is too short to wallow in despair; we have to choose hope.  and prayer.  and have faith that God has this all figured out.