I normally write the tip/hint column at Blissfully Domestic. This week, I am stepping out of that role to talk about my son and his speech delay. Please feel free to visit my blog, Toast on the Ceiling for more about my son's challenges and achievements.
My son Jimmy spoke his first word one morning at 8 months old. He said “hi” at eight months old one morning when I was walking down the stairs getting ready for work. It made my day and I bragged to all my mommy co-workers and his Grandpa (he works with me). I was ecstatic and proud mama that day.
And Jimmy didn’t speak another word until he was almost 12 months old.
I asked the doctor at his nine month checkup about this. He wasn’t even using Hi and didn‘t babble. He would cry and smile, but did not try to get attention or show us what he wanted, other than trying to take stuff from his older sister. This was totally opposite of my daughter. The doctor was absolutely unconcerned about that or other issues we saw. I thought, maybe I was being neurotic and left it alone.
We went along with out daily life. Jimmy wasn’t vocalizing at all. He turned one and spoke about two words. No babbling or vocalizing. I asked the doctor again about that and other issues we were seeing. I was told, “He’s a boy. He’s slow and that’s how God made him.” End of discussion and walked out of the exam room. I was FURIOUS. I wanted to trash the office. I went home with Jimmy and cried to my husband.
We went to Disneyland two months later. He was having asthma attacks the entire time we were there. He was kind of babbling, something an infant should be doing and not a toddler. He didn’t point to show us what he wanted. We had to ask and guess what he wanted and needed. When we got back to Illinois, we took him to the doc and at that point, the doc refused to diagnose him with anything.
I was even angrier than before after we saw a specialist and she said it was clear he and his older sister had asthma and probably since birth. I took him to a new pediatrician for the next scheduled check up, something I should have done a lot sooner.
At 20 months, Jimmy saw our new pediatrician. She asked me questions about his development. I went into all of the things I saw in him compared to our older daughter. She listened to me and took notes. She was asking more questions that the old pediatrician group had asked in a year. The new pediatrician believed there was an issue, but wanted to wait until age two for evaluations. If he hadn’t caught up developmentally at that point, we would take him for an evaluation.
At two, Jimmy spoke about 10-15 words and mostly babbled. He could sing better than he could talk. He didn’t point or take us to what he wanted. He threw numerous temper tantrums during the day. Some mornings, we had up to ten temper tantrums before 9am. We were teaching him ASL to try and alleviate the frustrations. It didn’t work.
I took him back to the new pediatrician for his checkup. We went over what had happened and where Jimmy was since the last visit. She played with him and asked him to do simple things that a normal two year old should do. She did not like the outcome. She wrote a referral for Speech, Occupations and Physical therapy evaluations and told us to get him in as soon as possible.
We took him for his speech evaluation at 25 months. The evaluation was at a local hospital that actually could get us to perform the evaluation. Another pediatric therapy center had a six week waiting list just for an evaluation. These were the only two rehabilitation centers that took our insurance in the area.
The therapist definitely noticed the issues immediately and recommended therapy once a week for him. I was relieved someone else agreed with me. It had to be pre-approved by insurance before we could schedule it, since it was not linked to an injury. We submitted all paperwork to insurance and waited a month for a decision. We thought we would be approved since I had the good insurance in the family. We were denied because it was developmental in the speech therapist’s opinion. So I was back to square one. I called the new pediatrician frustrated. We were losing time getting him help. She recommended I call Early Intervention.
I called Early Intervention in early March. I got a call back about a day later from our caseworker. We had a meeting a week later to complete the paperwork where I begged for someone to finally help us. I was almost in tears talking about Jimmy. I was so frustrated and angry at that point. I show the letters that insurance had denied us. I just wanted Jimmy to get the help he desperately needed.
We arranged a team evaluation with the Speech, Occupational, Physical and Developmental therapists on March 25th. At this point, he spoke about 30-40 words and should have had 200 or more. He was not making two and three word phrases and he still didn’t point to what he wanted. My suspicions were confirmed again. Jimmy had a 9 month speech delay, he was over 50% behind for his age group. I felt relieved, but frustrated. Why had no one else wanted to do something sooner? Why had it taken this long for him to get help?
Jimmy is now 3 ½ and attends an Early Childhood program in our district. Insurance still refuses to pay for any additional speech on the grounds its Developmental in nature. He aged out of Early Intervention the day before his third birthday. He was able to receive speech and occupational therapy for 9 months at a reduced rate we could afford. He still is not fully where he should be. If I put him with one my friend’s typical three year olds, you can see where his speech still needs work. As of now, the hope is he will be at age level by kindergarten.
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My nephew is 2.5 years old. At 2, he was taken for evaluation as he was not talking and he used to say a couple of words. He is higher on all the other developmental things but just won't talk. He will point to things and sign some things but he just won't talk. He is starting to babble when he gets excited and he said one sentence because his 16 month old brother says it ("i did it") all the time. But other than that, rather similiar. I may only be his aunt not his mom but we are very close so I understand your frustrations. We can't get him the help he needs either.
I can't believe how similar our stories are, except that I didn't have the insurance issues b/c I went straight to Early Intervention.
In my state, when you turn three you get turned over to your school district's intermediate unit. They have a preschool program and fill that gap for services until the child reaches school age.
They have to be tested again to make sure they still have a 25% deficit (in my state), but if they do they just continue on with any type of therapy through the IU. And, it's all free since it is a service of your school district.
I think my biggest frustration was not being able to convince my pediatrician that there was a speech delay. This was my third child and I was pretty certain something wasn't right…but we had to wait until he was about 26 months old before I could get anyone to agree me with. Of course, the speech therapist immediately saw the delay and identified the problem.
Good Luck!
I feel your frustrations completely. My son said, "Mama" at about 9 months then by 2 years old he only had about 15 words. I was finally able to get him into IU speach program at the age of 3. He is now 4 and we still have a long way to go. It is such a blessing to finally have people on our side helping our son communicate. For so long we felt so helpless and alone.
I can't believe how much the USA health system sucks. We have free speech therapy, physio, hearing tests etc… You do have to go on a waiting list but if you are on top of it (like you were – you knew very early that something was not quite right) you can get the therapy when you need it.
If you have health insurance, they will cover a percentage of the therapy fees. We don't need permission from our health insurer.
I'm glad your little boy has had the help he needed. I am also glad we live in Australia and my girls have had/are having all their therapy at very little expense (and stress) on our behalf.
You say that he attends an early childhood program in your district so why are they not providing him with speech, occ therapy ect. Once he ages out of early intervention the school district should be responsible for this. Obviously it varies from state to state. Does he currently have an IEP?
As a child psychologist I have worked in developmental therapy, and let me tell you, it all sounds familiar. You are rare in that you were early to suspect something, since it has been my experience that most often the parents are the ones making the excuses (he's a boy, he's smart-like they can't go together, it's because of a bilingual home, daycare… something) and then the diagnosis comes late. And it's true that the earlier the better, also to rule out possible underlying problems that may be causing a speech delay.
But I agree with other comments that I have yet to live in a school district that did not have early intervention for children until they were school-age. Head Start and programs like that are around, I hope that you can find them! Good luck!
Your post couldn't have come at a better time for me. We just had our 14-month-old son's early childhood intervention evaluation two days ago, and they determined he does have speech/communication delays. We'll get our service plan from them this week.
I had a friend tell me "Moms always know" when I told her I had a hunch my son had a hearing problem. Sure enough, the fluid from his first two ear infections had been hanging around for months and was causing him to have mild to borderline moderate hearing loss. He had tubes put in last week, which should improve his hearing significantly.
Because of those months with middle ear fluid and muffled hearing, my gut told me my son wasn't quite on track for speech. Those people I did talk to (except for the original friend I mentioned) told me they were sure he was fine and they knew so-and-so whose child didn't talk/gesture/etc. until much later. Again, sure enough, I was right – he does have a delay. (Interestingly, similarly to Jimmy's use of the word "hi", my son said "uh-oh" for a few weeks and then it disappeared into thin air.)
Best of luck working with your son to get him the help he needs. Moms just know, and you knew something wasn't right. Continue to trust your gut – you're your child's best advocate. Please keep us posted on how Jimmy is doing.
I HAVE THE SAME ISSUE, WHEN WILL MY DAUGHTER TALK.