Embracing the Special Needs My Daughter Fills
Yesterday I shared my youngest daughter’s entire birth story from beginning to end. How desperately we wanted her and the trials we endured prior to her delivery. The miscarriages and the fears. And yet, each situation brought me into a better place in my faith and into more peace with who my baby would become. As I drove to the doctor one particular morning I remember praying and asking God to just give me my baby. I did not care if she had any special needs… I just wanted her.
Fast forward a couple of years and our baby is nearing 2 years of age. As the youngest of 5 we realize she may be a little babied. She has 4 older siblings… 2 of them very willing close-in-age sisters… who answer her every whim. Yet, my husband and I began to notice some things about her that were different from the others. Most importantly, we noticed that she was not talking. Basically our little Monkey knew names for the family members… although not all of them… and a handful of other words but that was about it. We began to question and research it. The 2 responses we heard most often were (1) she will talk when she is ready and (2) she does not have to talk because everyone else does the talking for her.
Well, we continued to believe that one of those two factors played into her lack of vocabulary but were still concerned none the less. We prayed about it and discussed it often. We decided that we would give it a few more months and then ask the doctor.
Over this past summer our little Monkey was actually able to pick up quite a few words since her sisters were home. More talking during the day and we were encouraged that she was adding words to her small vocabulary list. But, it still was not enough. After all, she is going to be 3 in September and we were longing for a conversation with her.
I asked our pediatrician for a referral and he gave us one without question. Getting an appointment took a while but was understandable. We are receiving in-home care and we understood the time and staff constraints. First, our initial contact was to simply answer a few medical history questions and get her into their system. After that appointment we had another with the Speech Therapist to actually access her and see if she needed treatment.
Monkey went through the gauntlet of tests. Fortunately she sat in her stroller (her choice of seats for the event) and answered each question posed to her by pointing at the pictures. I was even impressed. I mean, of course I think she is smart, but she did extremely well on these tests. In fact, she only missed one in the Communicative Speech part. For some odd reason she did not recognize the bird? She taunts them every chance she gets at my parent’s house so I do not know how she missed that one.
Anyways, next came the Expressive Speech tests. I think she only got one right there. Well, maybe more than one… but it was not as encouraging as the first test was.
Our wonderful therapist added up her comprehensive totals and charted Monkey’s results so that she could let me know immediately where we were at. I saw the chart. I knew what she was going to say. She explained that the middle area is average and would mean there were no concerns. Just below that, there is a narrow area of the chart that classifies as a delay. And then, even further down, was the area of biggest concern: this was no longer considered a delay but a disorder. My baby was pretty far into that area.
That word… disorder… cut me deep. I felt like I had just been hit in the gut. I knew my daughter could not communicate what she wanted to me… but I never imagined it to be more than a delay or pure stubbornness even. Officially she was diagnosed with Expressive Speech Disorder.
Expressive Speech Disorder occurs when an individual understands language better than she is able to communicate.
Therefore, whereas our precious little girl can understand us, she simply cannot express to us what she wants to say. There is no known cause at the moment in her case, but we are having her hearing checked next month to see if she has any hearing loss that may be causing it. There is also the possibility of autism, but that will be accessed and diagnosed by her Occupational Therapist once we find one.
Also, while the therapist was here, she noticed that Monkey kept asking to eat. She always wants to eat. And when the therapist arrived my toddler was crying because we had to put clothes on her. She hates clothes. We are lucky to get a diaper on her. She typically prefers to wear nothing at all. After a bit of observation the therapist began to wonder… and I asked what I knew she was thinking. “Do you think she has Sensory Processing Disorder?” Well… yes.
More questions about her eating habits. Things she does with her mouth. Her distaste for clothes, shoes, socks, anything touching her. Again, we must wait for the OT to observe her and she will be able to tell us more. But, I know that after we implemented a few of the ideas the speech therapist told us about we saw improvement right away.
Apparently Monkey may also have a Hyposensitive Oral Sensory Processing Disorder. Again though… not diagnosed… yet. But, after researching it the symptoms fit her well and by giving her a teething ring we have seen less snacking and chewing on our bed sheet. It makes perfect sense. Plus it explains why we have a 50 pound toddler. Hopefully we learn more about that as soon as can get her OT scheduled.
There you have it. Not one bit of the information we have received over the past few weeks has surprised us really… in fact we are glad to have a diagnosis. Now we can get her the help she needs and, HOPEFULLY, she will be talking to us soon!
Her therapist says she tested very high in her cognitive skills and she is very smart. We see that in her sessions. She knows what everything is by pointing to it when asked. She can put blocks in their proper place. And on her first attempt at putting Mr. Potato Head together she did a fairly decent job… only put one arm and one ear in the wrong place. (I apologize for the blurry picture she did not want me to take a picture of it). Plus, she categorizes the toys when she plays, lines things up, understands when it is time to clean up, and even cleverly holds the bowling balls captive so that she does not have to ask for them. And she is picking up on the new signs that the therapist is teaching her. Not to mention, her attention span is double, if not more, than that of most children her age.
Monkey’s prognosis is good. We do not have all of the pieces yet but the ones we have are promising. We have explained her “special needs” to the other children and we pray about the days ahead. It is nothing we cannot handle because we know nothing is impossible for God. I cannot wait to hear my baby tell me she loves me. That is my biggest desire right now.
Lastly, can I make a suggestion to each of you? Never judge a child and parent you see in public having a rough time. After walking with my (then) 7 yr old through anorexia, watching a sweet young 5 year old become a new person while taking steroids for his brain tumor, and knowing my baby cannot tell me what is wrong… I completely understand that you never know what that child is going through. Can it be behavioral? Sure. But who are we to judge. How do we know the underlying reasons behind the tantrum? The crying?
The weekend after Monkey’s diagnosis we went to the mall and she had a breakdown in the food court. People stopped and stared. Came out of lines to look at her. Threw dirty looks at my husband and I as we tried desperately to calm her. Leaned over and whispered to friends while pointing. I felt the entire mall spinning around me and wanted to tell them all why she was crying. They would not have cared. Instead, I stood there in the middle of them all and began to cry. I wanted them to care. To understand. To not judge. PLEASE… be this person the next time you encounter it. You just never know!