Thursday, April 24, 2014

// g u e s t p o s t - c r y s t a l ' s s t o r y //

This post is a special one.  Crystal was one of the first (maybe the first?) person I talked to who also had a child with a speech delay.  We emailed back and forth and I felt less alone in our situation.  (thank you, friend!) A speech delay is not only difficult for the obvious reasons, such as not wanting anything to be "wrong" with your child, but it also makes the day to day a bit stressful.  Toddlers are dealing with enough frustrations, but when they also have a speech delay it can double it.  As mothers, we deal with comparison and jealousy.  At least I do.  I want to hear my son's little voice even more after I hear that child at the coffee shop singing her mom a whole song.  Crystal shares her story (so far) with honesty and compassion.  I appreciate her being open about it and can't wait to follow along with Braxton's progress as he begins to talk more and more. <3 Crystal blogs at Crystal Rose and you should definitely follow along! <3

Having a three year old has to be the most fun. Braxton is the sweetest little boy who is also the busiest boy I have ever met, seriously. The best and most simple way to explain him is this…”go, go, go.” He has always been somewhat of a challenge, especially when he was a baby, but I’m really enjoying him at this age now. With a speech delay, however, it’s frustrating…not only for him but for the whole family because of course we want to be able to communicate. At the age of three a child should be forming sentences and they should have 300-500 words they can put to use. My son can’t say anything more than a 2-word sentence, which we’re still working on, and he only has about 20 words that are significant where we know what they are. Sure, he has his own language, and he is a pro with that but getting him to really talk has been so much harder than I ever imagined.

 As a young first time mom I really didn’t have any idea what I was doing but I have always tried my best. I would read things on BabyCenter about development and at his pediatrician appointments we would talk about things but I wasn’t worried when, at 12 months, he still wasn’t talking. He would babble some and I kept in my head that all babies are different and that he’ll just be a late talker. At Braxton’s 18-month check up, his doctor said he was a little concerned that he still didn’t have real words so he referred us to a program called Early Interventions. They came out a little while later to do an evaluation where it showed that he did qualify for speech services. The director told us that it was still early at his age but if we wanted to do speech therapy we could, so we did. We have done services at our home since then. Every week a speech therapist would come in once a week, along with another therapist on another day, just to work with him. Basically all speech therapy is for children is a play session which works their brain without them even noticing.

As time went on, we saw a little progress, but nothing like I had expected. At two years old he still wasn’t having the conversations my other friends talked about having with their little ones. I started to kind of detach myself from things like that because in all honesty, it was hard reading at times. I didn’t want to compare my child to theirs, it wasn’t fair to Braxton and it wasn’t fair to myself. I still have those days though, and I think it’s normal. In May of last year we upped the speech sessions to two times a week, and he didn’t qualify anymore for the other therapist because he had made some progress with her. In July we ended up switching therapists because we felt his other therapist just wasn’t doing the best she could with him. I felt like he got too comfortable with her and maybe she was a little too comfortable with him because there wasn’t much “teaching” going on. We were told that it happens, and it might be good to mix things up for him. I learned that I needed to set aside my feelings of makings things awkward and just go for it, for Braxton’s own good. It was hard to make the choice because she had been in our life for over a year but it was needed for his progress…and I’m happy to say that he has made quite a bit of progress since then!

In September he started nursery school two times a week. It was the first time he had ever been away from me but we thought it would be perfect for him…turns out we were right. He loves it there! I think it was at his 2-½ year check up when I asked his pediatrician about autism. I was so scared to even say the word but he said he was confident that he didn’t see that in him. Even his new speech therapist said that, and she works with plenty of autistic children. Around that time I was told that we should look into getting a hearing test done. How did I never think of that before?! I immediately called and got a referral to an audiologist. At that appointment we were told that Braxton had major fluid in his ears and that he had a moderate hearing loss…basically he could hear like someone who’s under water. I instantly starting asking myself if this is why he’s not talking…has he been unable to hear us well all this time? It was frustrating that he still had fluid build up because he had been having ear troubles for over a month by then, and was on antibiotics to treat the reoccurring ear infection. The only reason we found out about the initial ear infection the previous month was at a check up so I wondered if he had been having ear troubles long before that. I’m not the kind of mom who takes him in for every little fever but maybe I should have. I mean of course he couldn’t technically tell me that his ears were hurting him…what if he has had all this fluid for awhile now and I just didn’t know. If you can’t tell, I still feel guilty about that.

To make matters even more frustrating, when we went to a local ENT in November after the hearing test, he confirmed the fluid but said he wouldn’t do anything to Braxton except “prolonged antibiotics” which I adamantly disagreed with. He had already been on antibiotics and they did nothing, I’m not going to subject him to something like that for just no reason…antibiotics will do nothing for fluid, only an infection which he didn’t have at that time. The doctor didn’t feel comfortable doing tubes on Braxton because of a medical condition…he just should have said that instead and saved us time and our $25 co-pay. After that fiasco we were referred to Upstate Hospital's ENT where they are incredible but also incredibly busy. We had been wait listed since the beginning of December until one of our other doctors in the same hospital found a loop hole and squeezed us in there, 2 months ahead of when he would have been seen. That appointment was just this past Friday, Valentine’s Day. They attempted the hearing test again but could only get so far because yes, he still has the fluid build up. After that they said he was a good candidate for tubes so we’re going to go ahead and do it. Unfortunately we still have to play the waiting game, his surgery isn’t scheduled until May 7th but at least it’s something! I’m interested, and very hopeful, to see some progress after it’s done.

In regards to speech delay I have so much advice for others but the first, and most important thing, is it can’t hurt to ask. Just bring it up to your pediatrician because there are so many resources that can help you. It’s never too early either. I wish I thought about doing a hearing test ages ago, Braxton might have been talking by now. As a mom it’s hard to see your child behind, in any way, but I just keep reminding myself that I have to be optimistic. Sure, there are bad days, but those pass. You have to stay positive when it comes to your children because you’re their biggest advocate. Don’t take no for an answer unless you’re sure about it. Read up on things and trust your gut because you know them better than anyone else. If your child is already in speech therapy make sure you know what they’re currently working on so you can practice the same stuff at home when the therapist isn't there. I point out everything to Braxton and I pronounce the words all dramatic so it gives him a chance to see it and hear it. Don't be so hard on yourself either, that's a big one for me especially because I'm a stay at home mom. I used to think I was the reason he was behind, like I didn't do enough, but I know that's not the case. 

I’m always open to talking to other moms who are dealing with the same thing because it’s not something that’s talked about often. I want to extend the opportunity to share ideas and stories for other moms to know that there’s never the perfect answer to this struggle but instead there are a million different ones. Every child is different but this journey of being a parent dealing with speech delay is similar so I would love to connect with anyone going through it. Even if it’s just a “hey, I feel ya” type of thing or more, I’m all for it. You can email me at if you would like!

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